April 2009
Making choices
Future dementia care: projections,
problems and preferences
Report by Access Economics Pty Limited for
Alzheimer’s Australia
Making choices: future dementia care
CONTENTS
Foreword ................................................................................................................................ i
Glossary and acronyms ....................................................................................................... ii
Executive summary ............................................................................................................. iv
1.
Introduction ................................................................................................................. 1
1.1
Context .................................................................................................................................1
1.1.1
Productivity issues in demographic ageing ...............................................................1
1.1.2
Caring for old and young ...........................................................................................5
1.2 Structure of this report .........................................................................................................8
1.3 Literature review – cross cutting issues ...............................................................................9
1.3.1
Dementia definitions and severity ..............................................................................9
1.3.2
Dementia care: international experience .................................................................10
1.3.3
Health and wellbeing impacts on carers ..................................................................12
1.3.4
Carer needs and interventions ................................................................................14
2.
The dementia caring workforce in 2008 ................................................................... 17
2.1
Family carers for people with dementia .............................................................................17
2.1.1
Primary and non-primary carers – demographic profile ..........................................17
2.1.2
Care hours and severity of disability........................................................................18
2.1.3
Value of informal care – methodology .....................................................................19
2.1.4
Value of informal care and cost to business ............................................................21
2.2 Residential aged care workforce........................................................................................22
2.2.1
Previous estimates of the dementia care workforce in RAC facilities .....................22
2.2.2
Data and methods ...................................................................................................24
2.2.3
Number of RAC dementia workers ..........................................................................31
2.2.4
Value of RAC for people with dementia...................................................................33
2.3 Community care workers ...................................................................................................35
2.3.1
Data and methods ...................................................................................................35
2.3.2
Number of community care dementia workers ........................................................38
2.3.3
Value of community care for people with dementia .................................................45
2.4 Conclusion .........................................................................................................................47
3.
Projections for the future.......................................................................................... 50
3.1
3.2
Estimated number of people with dementia to 2050..........................................................50
Threshold issues for modelling ..........................................................................................52
3.2.1
Are different types of care complements or substitutes? ........................................52
3.2.2
Consumer-directed strategies .................................................................................53
3.3 Projected care needs and options .....................................................................................55
3.3.1
Survey methodology ................................................................................................55
3.3.2
Survey findings ........................................................................................................67
3.3.3
Analysis of survey results ........................................................................................72
While every effort has been made to ensure the accuracy of this document, the uncertain nature of economic data, forecasting
and analysis means that Access Economics Pty Limited is unable to make any warranties in relation to the information
contained herein. Access Economics Pty Limited, its employees and agents disclaim liability for any loss or damage which
may arise as a consequence of any person relying on the information contained in this document.
Alzheimer’s Australia thanks both Pfizer Australia for meeting half the cost of this project through an unconditional grant and
Lundbeck for their unconditional grant.
Making choices: future dementia care
3.4
Modelling gaps in dementia care in future .........................................................................89
3.4.1
Estimating future demand for different types of care ...............................................89
3.4.2
Modelled trends in the supply of dementia care ......................................................91
3.4.3
Base case projections..............................................................................................92
3.4.4
Scenarios .................................................................................................................96
3.5 Conclusions from the modelling .........................................................................................99
4.
Issues and challenges ............................................................................................ 100
4.1
Revisiting ageing in place ................................................................................................100
4.1.1
Consumer preferences and quality of life ..............................................................100
4.1.2
Cost effectiveness .................................................................................................101
4.1.3
Aged Care Assessment Team (ACAT) recommendation process ........................101
4.2 Financing ..........................................................................................................................102
4.2.1
Accommodation and capital ..................................................................................102
4.2.2
Equity considerations and consumer capacity to pay ...........................................103
4.2.3
Alternative financing options ..................................................................................104
4.3 Workplace options ...........................................................................................................106
4.3.1
Introduction ............................................................................................................106
4.3.2
Investments in capital ............................................................................................107
4.3.3
Adequacy of workforce training pathways .............................................................108
4.3.4
Respite and support services ................................................................................115
4.3.5
Potential workplace initiatives and work-based care .............................................120
4.4 Special needs...................................................................................................................120
4.4.1
Younger people with dementia ..............................................................................121
4.4.2
Indigenous Australians with dementia ...................................................................122
4.4.3
Culturally and linguistically diverse Australians .....................................................127
4.4.4
People with dementia who need psychogeriatric services ....................................129
4.4.5
Rural and remote Australians with dementia .........................................................130
5.
Strategies and recommendations .......................................................................... 132
5.1
Summary of previous chapters ........................................................................................132
5.1.1
The dimensions of care provided to Australians with dementia in 2008 ...............132
5.1.2
Future projections – core issues ............................................................................134
5.1.3
Survey methods and findings ................................................................................135
5.1.4
Modelling results ....................................................................................................136
5.1.5
Issues and Challenges ..........................................................................................138
5.2 Implications and strategies ..............................................................................................140
5.2.1
Strategies to prevent or delay dementia onset ......................................................140
5.2.2
Strategies to provide greater choice for family carers ...........................................141
5.2.3
Strategies to enhance formal community services ................................................142
5.2.4
Strategies to enhance RAC services .....................................................................142
5.2.5
Financial provisioning ............................................................................................143
5.2.6
Workplace initiatives ..............................................................................................143
Making choices: future dementia care
5.3
5.2.7
Special needs ........................................................................................................144
Recommendations ...........................................................................................................145
Appendix A – Conditional logit model ............................................................................ 148
Appendix B – Comparing preferences across groups .................................................. 152
References ........................................................................................................................ 157
FIGURES
Figure 1-1: Australia’s population by age group and gender – 1971, 2001, 2041
Figure 1-2: Share of Australia’s population aged 65 years and older, 1967-2047
Figure 1-3: Projected Australian government fiscal balance, 2007-2046
Figure 1-4: Primary carers by age and gender, Australia, 2003
Figure 1-5: Ratio of females 50 to 64 years of age to persons aged 80 years and over
(caretaker ratio), Australia, 2002-2051
Figure 1-6: Growth in number of carers, by age and primary/non-primary, 1998-2003
Figure 2-1: Hours of direct care provided to RAC residents, 2002-03 to 2042-43
Figure 3-1: Screen shot of one choice scenario in the community care experiment
Figure 3-2: Screen shot of one choice scenario in the residential care experiment
Figure 3-3: Schematic representation of the survey process
Figure 3-4: Ranking on whether respondents had a choice in providing care
Figure 3-5: Distribution of hours spent by respondents providing informal care
Figure 3-6: Proportion of respondents undertaking various care activities
Figure 3-7: Ranking of community care attributes
Figure 3-8: Ranking of residential care attributes
Figure 3-9: Base case — projections of demand for and supply of informal care for
people with dementia (hours ‘000)
Figure 3-10: Base case — projections of demand for and supply of high care RAC
Figure 3-11: Base case — projections of the gap between demand and supply — by
care type (hours per pwd per week)
Figure 4-1: Dementia prevalence in people with non-English speaking backgrounds in
Australia and English speakers, 2005-2050
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7
23
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67
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TABLES
Table 1–1: Dependency ratios, 2007 to 2151
Table 1–2: Employment participation and earnings, 2008
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Making choices: future dementia care
Table 1–3: Comparison of dementia care in nine OECD countries
Table 2–1: SDAC estimates of Australians whose main condition was dementia or
Alzheimer’s, by age and gender, 2003
Table 2–2: RAC staff category as a % of wage costs, 2003
Table 2–3: Number of residents of RAC facilities with dementia 2008
Table 2–4: Average hours per resident per day — high care
Table 2–5: Ownership of mainstream aged care residential places, June 2006 (a)
Table 2–6: Average hours per resident per day — low care
Table 2–7: Estimates of paid staff hours per resident per day
Table 2–8: Paid staff hours per day and hours per year, RAC, 2008
Table 2–9: Volunteer hours per year, RAC
Table 2–10: Number of FTE paid staff caring for RAC dementia residents, 2008(a)
Table 2–11: Basic funding by condition groups and modelled RCS classification ($m)
Table 2–12: Average Australian Government payments (subsidy plus supplements) for
each RAC recipient
Table 2–13: Average Australian Government payments (subsidy plus supplements) for
each RAC recipient
Table 2–14: Allocated community care places, December 2007
Table 2–15: HACC hours and services (a)
Table 2–16: CACP hours/services for dementia clients, 2008
Table 2–17: EACH hours/services for dementia clients, 2008
Table 2–18: Meals on wheels, estimates of staff, hours and meals delivered
Table 2–19: Community care FTE staff — for services measured in hours only —
2008(a)
Table 2–20: Community care FTE staff (including volunteers) 2008(a)
Table 2–21: Value of HACC and CACP for dementia 2008 (bottom up estimates)(a)
Table 2–22: HACC, CACP, EACH and EACH-D Dementia funding, $ million
Table 2–23: Provision of formal (paid) care to people with dementia(a)(b)(c), 2008
Table 2–24: Hours of care and value per annum, by type of care, 2008
Table 3–1: Meta-analysis of prevalence rates, by 60+ age group and gender (%)
Table 3–2: Dementia prevalence by age and gender, Australia, 2000-2050
Table 3–3: AIHW estimates of dementia prevalence in 2003
Table 3–4: Attributes and levels used in the community care experiment
Table 3–5: Attributes and levels used within the residential care experiment
Table 3–6: Sample statistics, by mode
Table 3–7: Proportion of current carers versus previous carers
Table 3–8: Age distribution of survey respondents and recipients of care
Table 3–9: Relationship between respondent and recipient of care
Table 3–10: Geography of respondent’s permanent residence
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25
28
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33
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Making choices: future dementia care
Table 3–11: Additional respondent and care recipient characteristics
Table 3–12: Personal impact of providing care on the carer
Table 3–13: Impact of providing care on employment
Table 3–14: Amount of own money spent per week providing care
Table 3–15: Reasons why alternative care options are chosen
Table 3–16: Change in demand for community care from changing attribute levels
Table 3–17: Relative value of levels attached to community care attributes
Table 3–18: Change in demand for residential care
Table 3–19: Relative value of levels attached to residential care attributes
Table 3–20: Number of people with dementia receiving care, 2008
Table 3–21: Primary and non-primary carers by age, and population growth in each
age group 2008 to 2029
Table 3–22: Base case — gap between demand and supply and average growth per
year
Table 3–23: Scenario impacts on care hours demanded and supplied(a)
Table 4–1: Australian Government Budgets — expenditure specifically for carer training
(current prices $ million)
Table 4–2: Qualifications of those working in direct care, 2002 (% of workers with each
qualification)
Table 4–3: Australian Government Budgets — expenditure on respite care — current
prices — ($ million)
Table 4–4: Prevalence of dementia, Indigenous Australians living in the Kimberley
Table 4–5: Low and high estimates of the number of Indigenous Australians with
dementia (‘000)
Table 4–6: Recipients per 1,000 by age group, permanent aged care, CACP and
EACH, 2007
Table 4–7: Indigenous aged care recipients per 1,000 people in the relevant age group,
2007
Table 4–8: Indigenous recipients of community care, 30 June 2006
Table 4–9: CALD aged care recipients per 1,000 people in the relevant age group,
2007
Table 4–10: Number of people with dementia in rural and remote areas, 2006
Table 5–1: Provision of formal (paid) care to people with dementia (a)(b)(c), 2008
Table 5–2: Provision of formal (paid) care to people with dementia (a)(b)(c)
Table 5–3: Base case projections of gap between demand and supply by care type
(hours per pwd per week)
Table 5–4: Scenario impacts on care hours demanded and supplied
Table A–1: Model results from community care experiment
Table A–2: Model results from residential care experiment
Table A–3: Differences in the impact on demand from changing service levels within
the community care experiment
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Making choices: future dementia care
Table A–4: Differences in the impact on demand from changing service levels within
the community care experiment continued
Table A–5: Differences in the impact of demand from changing service levels within the
residential care experiment
Table A–6: Differences in the impact on demand from changing service levels within
the residential care experiment continued
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Making choices: future dementia care
FOREWORD
In commissioning this report “Making Choices” from Access Economics, Alzheimer's
Australia sought primarily to contribute from a consumer perspective to the reviews set up by
the Commonwealth Government and, in particular, to the important work of the National
Health and Hospitals Reform Commissioner and to the evaluation of the National Dementia
Initiative.
The report draws together a mass of information about dementia. It is a reminder to policy
makers and those at the political level of the devastating impact of dementia on the lives of
individuals and on their families and carers and the importance of increasing the resources
available for the Dementia Initiative – making dementia a national health priority.
For the individual, there can be no escape from the progression of dementia, or the frequent
social isolation and lack of social support and engagement.
For the carer, longer hours are often invested in care than any of us would contemplate
undertaking in the workplace. A surprising number of carers continue to provide care in
circumstances where, for whatever reason, they access little or no services at all.
The report “Making Choices” contains a body of information on the economic impact of
dementia and its future potential workforce impacts. The magnitudes are huge and
economists can and will argue about whether the figures are too high or too low. In policy
(and personal) terms it is clear that the impacts are extraordinary and will grow as the
numbers of people with dementia inexorably grow to over 700,000 by mid century. Lower
growth in the numbers of people with dementia can only happen if research finds better
treatments and Australians adopt brain healthy life styles to reduce dementia risk.
The choice modelling survey conducted for this project does however, break some new
ground. The results, perhaps, are not surprising in that carers want greater choice in respite
care and home care in community services and a good physical environment and quality
dementia care in residential care. But arguably the essential point – and the core of this
report – is that consumers have to make difficult choices. In doing so, they need good
information and flexible and responsive services.
This report by health economists contains a detailed economic and social analysis that
supports building on the Dementia Initiative to meet the growing challenge of the dementia
epidemic. The report has another message that comes back to a fundamental premise of
economics - and that is consumer sovereignty and choice.
Ron Sinclair
Chairman
National Consumer Committee
Alzheimer's Australia
i
Making choices: future dementia care
GLOSSARY AND ACRONYMS
ABS
Australian Bureau of Statistics
ACAP/T
Aged Care Assessment Program/Team
ACT
Australian Capital Territory
ADL
activities of daily living
AIHW
Australian Institute of Health and Welfare
ANHECA
Australian Nursing Homes and Extended Care Association
AWE
average weekly earnings
BPSD
behavioural and psychological symptoms of dementia
CACP
Community Aged Care Package — funded by the Australian Government
for older people who have been evaluated by an Aged Care Assessment
Team (ACAT) and found to be eligible. The CACP program provides
support services for older people with complex needs living at home who
would otherwise be eligible for admission to low-level residential care.
CALD
culturally and linguistically diverse
care staff
people providing formal care services associated with the funded health
and ageing system, usually paid, but also volunteers
CDAMS
Cognitive Dementia and Memory Services Clinics
CDC
consumer-directed care
CPI
consumer price index
DoHA
Department of Health and Ageing
EACH
Extended Aged Care at Home program — funded by the Australian
Government for older people who have been evaluated by an ACAT and
found to be eligible. The EACH program provides care at home which is
equivalent to high level residential care.
EACH-D
Extended Aged Care at Home Dementia program — funded by the
Australian Government for older people who have been evaluated by an
ACAT and found to be eligible. The EACH-D program provides the
equivalent of high level residential care in the home to frail older people
who experience behaviours of concern and psychological symptoms
associated with dementia.
FACP
Flexible Aged Care Program
family carers
people providing informal care services usually for close family members
(also sometimes for friends or neighbours)
flexible care
Flexible care addresses the needs of care recipients in ways other than
the care provided through mainstream residential and community care.
Five types of flexible care are now provided for under the Act—Extended
Aged Care at Home (EACH) and Extended Aged Care at Home
Dementia (EACH-D) packages, Innovative Care, Multi-purpose Service
places and Transition Care places. In addition, flexible models of care are
provided under the National Aboriginal and Torres Strait Islander Flexible
Aged Care Program. The services funded under this program provide
culturally appropriate aged care, close to community and country of older
Indigenous people, and mainly in rural and remote areas. Services
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Making choices: future dementia care
delivered under this program are outside the Aged Care Act 1997.
FTE
full time equivalent
GDP
gross domestic product
GP
general practitioner
HACC
Home and Community Care
HASA
Healthy Ageing Savings Accounts
IGR2
the second InterGenerational Report
LTC
long term care
NCC
National Consumer Committee
NDSP
National Dementia Support Program
NSW
New South Wales
NT
Northern Territory
OECD
Organisation for Economic Cooperation and Development
OFTA SA
Office for the Ageing, Department of Families and Communities,
Government of South Australia
PPP
purchasing power parity
pwd
person (people) with dementia (acronym used only in tables and charts
for space reasons)
RAC(F)
Residential Aged Care (Facility)
RCS
Residential Classification Scale
SA
South Australia
SCRGSP
Steering Committee for the Review of Government Service Provision
SDAC
ABS Survey of Disability, Ageing and Carers
TOCC
Taskforce on Care Costs
UK
United Kingdom
US
United States (of America)
VHC
Veterans’ Home Care
WA
Western Australia
WTP
willingness to pay
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Making choices: future dementia care
EXECUTIVE SUMMARY
An important consequence of Australian demographic ageing is the rapid increase of the
number and proportion of people who have dementia, projected to increase from about
230,000 in 2008, to 465,000 in 2030 and to over 730,000 in 2050. Australia has recognised
dementia as a health priority and taken the first steps through the Dementia Initiative to meet
the growing challenges of the dementia epidemic.
Ideally, the care continuum for dementia should be a seamless process and carers should be
supported in the delay of institutionalisation. The findings of this report also highlight the
need for a fundamental rethinking of how to achieve the delivery of flexible dementia services
that respond to the needs of the person with dementia and their families and carers.
The caring role
In the coming decades there will be a greater future need for care services for people with
dementia – both formal care services funded by the health system (provided by paid care
staff and some volunteers), and informal care provided gratis by carers whether family,
friends or neighbours.
Caring for a person with dementia can be particularly challenging due to the
characteristics of the condition and may be more burdensome than caring for people
with other chronic conditions and disabilities. As a consequence, caring for a person
with dementia can have a negative impact on the health and wellbeing of the carer,
particularly family carers over longer periods – depression, anxiety, stress, physical
health impacts and sleep disruption.
Care giving (in general, not only for people with dementia) is related to reduced labour
force participation for participants and in turn, poorer health outcomes.
Women who left or reduced work were more likely to be stressed, to report only poor to
fair health and report frequent visits to the general practitioner (GP) compared to those
who maintained paid employment when starting care.
International and Australian studies show that access to flexible support, information
and respite services remain key needs for family carers, together with workplace and
community understanding. All carers need to be valued, and evidence suggests that
comprehensive, multidimensional dementia-specific training is of benefit.
The dimensions of care provided to Australians with dementia in 2008
Family carers may be the only source of care for people with dementia (around 37% of
people with dementia received no formal care in 2008).
The cost of replacing the family carers with paid carers is estimated at $5.5 billion per
annum.
The opportunity cost or lost productivity borne by individuals, business and
Government is estimated at $881 million.
The 63% of people with dementia who received formal care were cared for by 84,000 formal
(paid) full time equivalent (FTE) staff. Each person with dementia received around
1,012 hours of formal care.
Most formal care staff worked in residential aged care facilities (RACFs); around
78,000 FTEs cared for the 90,200 people with dementia living in RAC.
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Making choices: future dementia care
The other paid formal care staff (5,855 FTEs) cared for 52,000 people with dementia
living in the community and receiving formal care.
In addition, volunteers provided up to 8.4 million hours of unpaid formal care in 2008.
Around 2,174 FTE volunteers contributed 3.73 million hours of care for people with
dementia in RACFs (41 hours per person with dementia in RAC).
Around 2,695 FTE staff, the vast majority of whom were volunteers, provided
4.63 million hours of care to people with dementia in the community who received
HACC, CACP, EACH and EACH-D1 (89 hours per person with dementia receiving
formal community care).
TABLE E 1: PROVISION OF FORMAL (PAID) CARE TO PEOPLE WITH DEMENTIA (A)(B)(C), 2008
Residential location
Living in the community
with no assistance
Living in the community
with HACC
Living in the community
with CACP
Living in the community
with EACH, EACH-D
People with
dementia (%)
Hours of
formal (paid)
care
Formal
(paid)
FTEs
Hours of
formal care
per pwd
Formal
FTEs per
pwd
85,125(37)
0
0
0
0.0
41,399(18)
1,615,567
941
39
0.0
7,291(3)
4,996,045
2,909
685
0.4
3,368(2)
3,444,237
2,005
1,023
0.6
Living in RAC (RCS 5-8)
15,061(7)
20,408,293
11,882
1,355
0.8
Living in RAC (RCS1-4)
75,107(33)
113,531,075
66,099
1,512
0.9
143,995,217
83,835
Total
227,350(100)
1,012(d)
0.6(d)
(a) FTE based on 38 hours per week, adjusted for recreation leave, sick leave and long service leave. (b) Based
on an average of ANHECA and Bentley’s MRI estimates for high care RAC. (c) Excludes a large number of
HACC, CACP, EACH and EACH-D services provided to people with dementia living in the community such as
meals, linen deliveries and transport trips, as these are not measured in hours. (d) Averages calculated only for
people receiving formal care.
Source: Access Economics calculations.
Valuing these formal sector community care hours at the replacement valuation level
($27.15 per hour) suggests that the total cost per annum was $272.8 million in 2008,
which triangulates well with the published government data on the actual costs; this
provides a low estimate of $248.6 million and a high estimate of $288.1 million.
Valuing the RAC services using top-down and bottom-up estimates from published
data sources provides estimates of $3.6 billion and $5.1 billion respectively.
If volunteer hours are valued at the opportunity cost of family carers, they are worth
$16.2 million and $20.1 million and respectively. The next table provides a summary.
1
Home and Community Care, Community Aged Care Package, Extended Aged Care in the Home and Extended
Aged Care in the Home Dementia programs.
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Making choices: future dementia care
TABLE E 2: HOURS OF CARE AND VALUE PER ANNUM, BY TYPE OF CARE, 2008
Type of care
m hours
$m pa (low) $m pa (high)
Informal care
Community care (paid)
Community care volunteers
RAC
RAC volunteers
Total
203.4
10.0
4.6
133.9
3.7
355.8
881.2
248.6
20.1
3,641.0
16.2
4,807.0
5,523.5
288.1
20.1
5,064.3
16.2
10,912.1
The analysis here suggests 60.3% of people with dementia (137,182) were living in the
community in 2008. This is lower than internationally but slightly higher than earlier
Australian estimates, which may reflect a trend increase in the number of people with
dementia living in the community over time.
The demand for care services
Associated with the increase in the number of people with dementia will be a rapid rise in
demand for care services and workforce to meet care needs. The modelling in this
report shows that, in the absence of any policy or other change, by 2029 (ie, in two decades):
there will be a shortage of 58,887 FTE paid dementia care staff (70% of the current
workforce of 83,835 FTE);
of these paid staff, 91% work in high care RACFs, with the remainder providing various
forms of dementia community care; and
there will be a shortage of 94,266 FTE family carers (80% of the current unpaid
dementia family carer workforce of 118,446 FTEs).
Overall, this is a shortage of 153,153 FTE carers for people with dementia in
2029 relative to 2008 ie, 76% of the 2008 workforce and 36% of demand in 2029.
Modifying core parameters (a higher proportion of people with dementia in the
community, higher female labour force participation and a greater number of people
living alone) changes the composition of the shortage, although overall there is little
impact – the total shortage ranges between 153,175 and 159,184 (see chart below).
DEMENTIA CARER SHORTAGE BY 2029 RELATIVE TO 2008 (FTES), BASE CASE & 3 SCENARIOS
Family carers
Paid community carers
Paid low care RAC carers
Paid high care RAC carers
180,000
160,000
140,000
120,000
100,000
80,000
60,000
40,000
20,000
-20,000
Base case
S1 Hi % pwd in
community
S2 high fem
workforce
participation
S3 higher % pwd
living alone
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Making choices: future dementia care
The projected substantial and growing deficit in the dementia care workforce on
the basis of current trends is a matter requiring urgent planning responses.
On the basis of current policy settings, the modelling suggests that the major supply
constraints are in relation to (1) unpaid family carers and (2) paid staff in high care
RACFs, with much smaller deficits in low care RAC and in EACH and EACH-D, and small
surpluses in two types of community care – HACC and CACP.
Making Choices – the survey
A survey was conducted to ask informal carers to choose their most preferred dementia
option in respect of either community care or residential care. Questions were asked relating
to the characteristics, experiences and attitudes to the choices made.
Of the sample (n=564), 54% were currently providing dementia care and 46% had done so
previously. The sample distribution (in terms of aged, gender, ethnicity, jurisdiction and
regionality) adequately reflected the population of dementia carers.
Of informal dementia carers, 42% responded they were in some way compelled to undertake
care. These carers provided 24 hours per week of care on average, although the distribution
was bimodal – with nearly 20% of carers providing 0-4 hours and nearly 20% providing over
55 hours per week. Carers provided a wide range of services, with a negative impact on:
physical health in 31% of respondents;
mental health and emotional wellbeing in 53%; and on
lifestyle (in terms of reduced time for other activities) in 55%.
There were also negative impacts on work and finances. Around 20% of respondents had to
take leave of absence from work to provide care, around 13% had to permanently reduce
their work load, while around 8% of respondents had to stop work altogether in order to
provide care. Around 83% of respondents provide financial support to the person with
dementia – 6% providing more than $200/week and 43% providing more than $50/week.
The choice between different care options (informal, formal community care, and residential
care) made by the family carer and the person with dementia was complicated. A conditional
logit model was used to analyse the choices made by respondents in the community care
and residential care discrete choice experiments, to determine the most valued attribute
within care and to rank care attributes from most valued to least valued.
In the community:
Home support services (such as shopping, transport and cleaning) were valued
highest; the increase in demand for a care option with home support twice a week
compared to one with no home support was around 55%.
Respite care services available daily and for extended periods of time were also valued
highly; a care option including this attribute would have 48% higher demand than one
that did not include respite.
A community centre that offers counselling, recreational activities, education and
information services during the working week and on weekends would have 31%
higher demand than when a community centre was not available.
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Making choices: future dementia care
Dementia care case workers were also valued: a care option with a case worker that
can develop an individual care program and organise community care services will
have around 24% more demand than one that does not have a case worker available.
The importance of home support services and respite services is consistent with the finding
that most carers want to keep the person with dementia out of residential care for as long as
possible.
In residential care:
A private room and bathroom were most highly valued, with over 50% higher demand
than an option without these facilities, and a willingness to pay (WTP) $49.50/week for
this attribute.
Skilled RAC workers specialised in providing dementia care was next most highly
valued, with 46% higher demand compared to minimum legal standards of care and a
WTP $41.80/week.
The ability to accommodate cultural and recreational needs on an individual basis was
also valued, with 30% higher demand compared to these needs unable to be met and
a WTP $30.00/week.
Distance from the family carer was next most important, with 25% higher demand for a
facility 10 minutes away compared to one 90 minutes away, and a WTP $26.20/week.
Almost identical in preference was the capacity of the service to accommodate all
stages of dementia, which also generated 25% higher demand than one requiring a
move, with a WTP $22.50/week.
Less important were the visiting hours and bond amount.
Modelling gaps in dementia care in the future
An economic model was built in Excel 2007 with two ‘modules’ – the first module quantifying
future requirements for the different types of dementia care (demand for care) and the
second module quantifying the future supply of each different type of care over time.
As it is problematic to determine the future choice between informal and formal care of
different types, the base case for the total demand for dementia care was split into informal
care, formal community care, and residential care using the amount of hours within each type
of care being used by people with dementia in 2008.
In the base case, demographic change above (population ageing) will lead to shortages of
informal care and high care RAC, with lesser shortages for EACH/EACH (D) and low care.
Scenario analysis shows that an increase in demand for community based care in preference
to RAC (Scenario A) could ameliorate the shortage in RAC (although not eliminate it), but at
the same time could further exacerbate the shortage in informal care and EACH/EACH-D.
However, if trends in other important drivers in the demand and supply of care for people
with dementia continue — that is, increases in the desire of women to participate in the
labour force (Scenario B) and increases in the proportion of people living alone (Scenario C),
the shortage in RAC will become even worse.
Issues and recommendations
The evaluation of the Dementia Initiative - Making Dementia a National Health Priority and
the reform directions suggested by the National Health and Hospitals Reform Commission
provide an opportunity to ensure the health system is positioned to respond effectively to the
viii
Making choices: future dementia care
rapid rise in demand for care services and workforce to meet the care needs of people with
dementia.
It is recommended that eight major issues need to be addressed.
i)
Planning aged care and dementia services
Due to ageing, the share of the population with dementia is increasing in those aged 70
years and older, but planning ratios for RAC and community care packages places are based
only on the total 70+ growth rates. This implies planning ratios need to increase or be
redefined, with more emphasis on dementia-specific aspects (including facility design,
appropriate respite services from RAC facilities or separate day facilities). There is also a
need in financial planning to cater for the capital needs of community care (eg, home
modifications and equipment). It is recommended that:
ii)
the planning ratios for aged care be reviewed and consideration given to establishing
as part of the ratio the provision needed for dementia specific community and
residential care services.
The balance of community and residential care services
This report suggests that consumers value choice in their residential and community care
options. In economic terms there is an argument for consumer sovereignty, recognising that
consumers should be better positioned to determine the care they need in respect of their
own individual circumstances.
If community care services are to be more attractive to consumers there is a need to
restructure and reform community care so that care is available to respond to the range of
needs, without inflexible boundaries. There is a need also to introduce consumer-directed
models of care in the delivery of care packages and respite care to enable those people with
dementia and their carers who wish to do so to determine the services that would meet their
needs either through cash or individual budgets. It is recommended that:
consumer-directed models of care should be introduced to empower consumers who
wish to do so to make choices in the mix of community care and residential care
services that would best meet their needs including through cash options and individual
budgets managed by agencies;
community care be reformed so that care is calibrated to respond to the range of
needs; and
community (including EACH –D packages) and residential care services for people with
dementia should be adequately increased to meet projected community demand, with
enhanced consumer choice in tailoring services and ongoing consumer consultation.
iii)
Information and consumer support
The survey work in this report demonstrates the complexity of the choices that consumers
make. It also demonstrates the need for consumers to be well informed to make choices,
including through Aged Care Assessment Teams and organisations such as Alzheimer's
Australia, including their National Dementia Support Program (NDSP).2 The ACAT role is
2
The NDSP provides a national approach to the provision of information, awareness and core support services,
including counselling, support groups, education for carers and Living With Memory Loss Programs. Other
agencies play an important role, including the Commonwealth Respite and Carelink Centres.
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Making choices: future dementia care
critical in ensuring that people with dementia are properly assessed and their families and
carers receive appropriate advice in terms of future care. It is recommended that:
access to information and carer support should be enhanced and expanded through
the National Dementia Support Program and the Commonwealth Respite and Carelink
Centres; and
consumer awareness and satisfaction with ACATs is reviewed.
iv)
Quality dementia care
There is an important emphasis in the Dementia Initiative on training. The survey findings in
this report support that priority and for building on it in the next five years. Currently,
dementia specific training options are available at the Certificate IV and Diploma level while
the Dementia Collaborative Research Centres promote a focus on knowledge transfer so
that research evidence is translated into practice. The Dementia Training Study Centres
develop pathways that provide career opportunities and training for those with a commitment
to dementia care. It is recommended that:
the consistency and coverage of dementia skills training is improved by extending
access to dementia training for formal and family carers, promoting pervasive
understanding of quality person-centred dementia care, and monitoring outcomes; and
the delivery of Certificate IV and Diploma in Dementia Practice is increased to create
dementia care specialists in the workplace.
v)
Workforce options for carers
Reliance on females aged 45-64 years to provide informal care is likely to have an increasing
toll on productivity (and health outcomes) in this cohort. The productivity of the informal and
formal caring workforce can be improved by increasing the capital to labour ratio and
improving the skills and knowledge of carers. It is recommended that the action that would
most assist carers to balance their work and caring responsibilities are:
improved access to long day respite care (potentially through greater prioritisation of
dementia respite services in the National Carers Respite Program); and
greater workplace flexibility.
vi)
Special needs groups
There are five groups that are particularly disadvantaged in access to dementia care
services. It is recommended that action is taken to give a higher priority to the provision of
dementia services to:
younger people with dementia;
Indigenous people;
people from Culturally and Linguistically Diverse backgrounds;
those with dementia and psychiatric issues who fall between the aged care and mental
health systems; and
those in rural and remote areas.
vii)
Research
The potential for reducing dementia incidence, prevalence and disability burden of dementia
in the longer term will be dependent on research and dementia risk reduction. Available
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Making choices: future dementia care
evidence suggests dementia research is under-resourced in comparison to other chronic
diseases and that there are huge potential savings from investment in research that results in
delay in the onset of dementia. There is no acknowledgement in government health
prevention policies of the potential for dementia risk reduction or the links between dementia
and other chronic diseases such as vascular disease and diabetes. It is recommended that:
investment in dementia research and prevention should continue to be expanded; and
awareness of dementia risk reduction is promoted eg, through the Mind your Mind
program.
viii)
Develop new financing mechanisms
The current system for co-financing aged care includes mean-tested bonds in low-level RAC
and accommodation charges in high level RAC, fee structures for HACC, CACP, EACH and
EACH-D, and Carer Payment and Carer Allowance (currently being reviewed). The current
levels of government support for these services are unlikely to be able to be continued in
future as needs burgeon. It will become increasingly important for people with the capacity
to pay (through accumulated household wealth) to do so, allowing the government to
continue to provide a safety net for those without the financial means to cover their dementia
care costs. A parallel, complementary savings mechanism would overcome the moral
hazard in the current superannuation and insurance modesl, since currently people who can
afford to have incentives to spend their retirement incomes on less essential goods and
services (eg, leisure, travel) and fall back on public safety nets rather than provisioning for
their needs. It is recommended that:
dedicated Healthy Ageing Savings Accounts (HASAs) for aged care are introduced that
are additional to superannuation.
Access Economics
8 April 2009
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Making choices: future dementia care
1. INTRODUCTION
Access Economics was commissioned by Alzheimer’s Australia in October 2007 to
undertake an analysis of the available data on dementia, workforce and carers, estimating:
the number of carers (informal and formal) for people with dementia in Australia, the
hours of care they provide, the value of that care and its impacts (eg, lost productivity
and costs to businesses);
future projections of the dementia caring workforce requirements and the likely mix
between informal and formal sector carers, based on consumer preferences between
residential and community care (using survey data and a focus group approach to
estimate future choices and preferences);
challenges from the analysis under different scenarios of labour supply in both the
formal and informal sectors, with discussion of training needs and issues such as Aged
Care Assessment Team (ACAT) assessments and the mix of public and private
financing; and
strategies and recommendations – with the focus particularly around the effectiveness
of different forms of carer support and of dementia prevention.
1.1
CONTEXT
In recent years, Australia’s demographic ageing has become a major policy issue with
particular important consequences for longer term provisioning for retirement incomes, health
and aged care expenditures, and workforce issues – notably the caring workforce.
Section 1.1.1 summarises the demographic drivers and their productivity impacts, while
Section 1.1.2 looks specifically at caring issues.
PRODUCTIVITY ISSUES IN DEMOGRAPHIC AGEING
1.1.1
Australia’s population – like that of many industrialised nations – is ‘ageing’, which means
that the average Australian is now older than previously, and a higher proportion of
Australians are in older age groups. This is a product of declining fertility rates (due to the
availability of the contraceptive pill since the 1960s and funded abortion services since the
1970s) and higher life expectancy due to declining age-specific mortality rates. The result is
a change in the demographic structure from a ‘pyramid’ in 1971 to a ‘coffin’ shape by 2041.
FIGURE 1-1: AUSTRALIA’S POPULATION BY AGE GROUP AND GENDER – 1971, 2001, 2041
Females
Males
80-84
80-84
Males
Females
80-84
70-74
70-74
70-74
60-64
60-64
60-64
50-54
50-54
50-54
40-44
40-44
40-44
30-34
30-34
30-34
20-24
20-24
20-24
10-14
10-14
10-14
0-4
0-4
-10%
-8%
-6%
-4%
-2%
0%
2%
4%
6%
8%
10%
-10%
Males
Females
0-4
-8%
-6%
-4%
-2%
0%
2%
4%
6%
8%
10%
-10%
-8%
-6%
-4%
-2%
0%
2%
4%
6%
8%
10%
Left panel: 1971. Centre panel: 2001. Right panel: 2041.
Source: Access Economics based on online population data from the Australian Bureau of Statistics (ABS).
The second InterGenerational Report or IGR2 (Costello, 2007) provides projections of
Australia’s population, showing that those aged 65 years and older will increase from 8.5% of
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Making choices: future dementia care
the population in 1967 to 13.4% in 2007 to 25.3% in 2047. Most of the impacts of ageing are
still to come, as can be seen in Figure 1-2 by the steepening in the gradient of the ageing
curve after 2007.
FIGURE 1-2: SHARE OF AUSTRALIA’S POPULATION AGED 65 YEARS AND OLDER, 1967-2047
30%
25%
20%
15%
10%
5%
0%
1967
1977
1987
1997
2007
2017
2027
2037
2047
Source: Access Economics derived from Costello (2007:16).
The Productivity Commission produces very similar estimates, showing an increase in
dependency of those aged 65 years and older (ie, the ratio of this age group to those aged
15-64 years) from 19.5% in 2007 to 64.2% by 2151. In simple terms, this means that today
there are five people of working age to every one older person but this will change to there
being only three working age people to every two older people by the end of the projection
horizon. Moreover, when children are also included, dependency ratio increases from 48.2%
today to 90.9% in 2151 ie, nearly one dependant for each working age person.
TABLE 1–1: DEPENDENCY RATIOS, 2007 TO 2151
Population (million)
Share of 65+ (%)
Share of <15 (%)
Share of 15-64
65+ dependency (%)
<15 dependency (%)
Total dependency (%)
2007
2020
2051
2101
2151
21.0
13.1
19.4
67.5
19.5
28.7
24.8
17.3
18.0
64.7
26.8
27.8
32.0
26.3
15.6
58.1
45.3
26.9
40.3
32.2
14.3
53.5
60.1
26.7
45.7
33.7
14.0
52.3
64.2
26.7
48.2
54.6
72.2
86.8
90.9
Source: Productivity Commission (2008).
The main conclusion of IGR2 is that providing for demographic ageing has substantial
implications for the Australian Government’s fiscal balance. As a result of expected growth in
health and aged care expenditure (growth in the aged pension is no longer a major concern
as retirement incomes have now been provisioned for through superannuation since 1996),
the Australian government’s underlying fiscal balance is forecast to fall from its current
surplus of approximately 1% of Gross domestic product (GDP) to a deficit of around 3% of
GDP by 2046-47 (Figure 1-3). Total Australian health and aged care expenditure have
grown from 4½% of national income in 1970 to over 10% of the economy today (over
$107 billion in 2008), with continued growth to around 16-17% of the economy by midcentury. Given this, it is likely that all Commonwealth outlays, and in particular health and
aged care expenditure, will come under increasing pressure as future governments review
the desirable evolution of the Commonwealth’s fiscal balance over time.
2
Making choices: future dementia care
FIGURE 1-3: PROJECTED AUSTRALIAN GOVERNMENT FISCAL BALANCE, 2007-2046
2.0%
% of GDP
1.0%
0.0%
-1.0%
-2.0%
-3.0%
-4.0%
-5.0%
-6.0%
-7.0%
-8.0%
2007 2010 2013 2016 2019 2022 2025 2028 2031 2034 2037 2040 2043 2046
IGR2 fiscal gap
Total health spending
Source: Costello (2007).
The chart highlights that it is health spending that is driving the gap, reflecting
epidemiological, technology and income factors as well as demographic ageing per se.
Australia’s epidemiology is changing (Broe, 2002): Australians born today live more than 20
years longer than our counterparts a century ago3. At the opening of the 20th century, major
killers were infectious diseases, diseases of early childhood and maternal morbidity. By midcentury, the major killer was cardiovascular disease, with great gains made in preventing and
treating heart disease and injuries in recent decades. In the opening years of the 21st
century, chronic diseases of ageing have become growing sources of morbidity and mortality
for Australians, in particular cancer, diabetes and strongly age-related conditions such as
musculoskeletal conditions, hearing loss, vision loss and neurodegenerative diseases such
as dementia. Dementia will overtake depression as Australia’s single largest source of
disability burden around 2016 (Access Economics, 2003). The strong correlation between
age and health/care spending can be seen almost universally across all types of services –
hospital, medical specialists, general practitioners (GPs), pharmaceuticals, diagnostics, allied
health, residential and community care services.
In addition, spending on healthy ageing has a high income elasticity of demand – as our
incomes increase, our expectations to live longer and healthier lives increase, and so far
technology has delivered the means for our life expectancy to continue to rise each year. It
is probable that Generation X and Y as they age, due to greater literacy with information
sources such as the internet and greater expectations that their needs will be met, may exert
even stronger pressures on demand for health and aged care services. This driver of future
growth in health spending is consistent with projections in other OECD countries, such as the
United States (US) below, where one projection by eminent economist Professor Robert Hall
suggests the health sector may grow to 30% of the US economy by mid-century (it is already
around 16% there compared to 10% here in Australia).
‘... health spending is a superior good with an income elasticity well above one.
As people get richer and consumption rises, the marginal utility of consumption
falls rapidly. Spending on health to extend life allows individuals to purchase
additional periods of utility. The marginal utility of life extension does not decline.
3
http://www.aihw.gov.au/mortality/data/life_expectancy.cfm
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Making choices: future dementia care
As a result, the optimal composition of total spending shifts toward health, and
the health share grows along with income. This effect exists despite sharp
diminishing returns in the technology of life extension. In projections based on the
quantitative analysis of our model, the optimal health share of spending seems
likely to exceed 30 percent by the middle of the century.’ (Hall and Jones, 2005)
IGR2 highlights that to sustain growth in Australian GDP it is important to focus policy on the
‘three Ps’ – population, participation and productivity. This is a short hand description of the
identity that GDP is in fact a product of the working age population, the extent that people are
employed and the hours they work, and the amount that they produce each hour. The
identity is summarised as follows.
GDP = Pα p(1-u) h y
P is the number of people in the population
α is the proportion of the population who are working age
p is the workforce participation rate
u is the unemployment rate
h is the average hours worked
y is productivity (GDP per hour of work)
}
Population
}
Participation
}
Productivity
One implication of the IGR2 is that in coming decades there will be growing pressures to
enhance productivity and workforce participation. Pressures may be particularly strong for
people approaching age 65 years and for females. For women aged 55-59 and 60-64 years,
employment rates are lower than for males of the same age and for younger women. Table
1–2 shows that female employment falls steadily from 86% of the male rate in the 45-49
cohort (77.4%/90%) to 22% in the 70-74 cohort (1.3%/5.9%); lower Average Weekly
Earnings (AWE) reflect fewer hours worked, among other factors.
4
Making choices: future dementia care
TABLE 1–2: EMPLOYMENT PARTICIPATION AND EARNINGS, 2008
Age
(years)
Males
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
Females
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
Probability of
being employed
(%)
Expected
retirement age if
employed (years)
AWE ($2008)
Expected
remaining lifetime
earnings ($2008
net present value)
0.0%
55.8%
85.2%
89.9%
90.3%
90.6%
89.4%
90.0%
86.0%
72.8%
50.8%
20.7%
5.9%
0.0%
63
63
63
63
63
63
63
63
63
64
65
68
72
77
0
317
691
1,008
1,211
1,314
1,314
1,322
1,303
1,242
1,117
863
863
863
1,476,577
1,594,615
1,673,907
1,647,400
1,532,510
1,357,296
1,141,641
913,034
661,838
409,440
195,807
56,891
12,743
0
0.0%
58.9%
78.8%
74.8%
68.7%
70.8%
75.0%
77.4%
68.7%
52.7%
28.1%
8.5%
1.3%
0.0%
60
60
60
60
60
60
60
60
61
62
64
68
72
77
0
230
592
800
846
819
790
822
810
774
676
517
517
517
802,612
866,773
899,116
843,945
748,399
649,900
544,005
426,042
286,896
158,191
59,672
12,714
1,723
0
Sources: ABS 6105.0 for employment rates by age and gender, ABS 6310.0 for AWE by age and gender,
ABS 6345.0 for wage inflation from 2006 and calculations by Access Economics.
A key implication is that these female cohorts are the major source of primary family carers
and, indeed, lower workforce participation reflects – at least in part – the primary caring role
of these people as well as the increasing need for care of older people.
1.1.2
CARING FOR OLD AND YOUNG
Data from the Survey of Disability Ageing and Carers (SDAC)4 (ABS, 2005b) show that in
2003, 474,600 Australians were primary carers, providing the majority of informal care
required and generally living in the same household (78%) as the care recipient. Women
represent 71.3% of primary carers (Figure 1-4) and around 160,000 Australian women aged
45-64 years were primary carers.
4
AIHW (2006:43,73) notes that some caution is required in relation to the dementia data in the SDAC survey, in
particular for people with mild dementia in both community and residential care. The 2006 Census included a
short series of questions in relation to core activity need for assistance, which is conceptually similar to the survey
and disability module population of people with a profound or severe disability. Due to the collapsed nature of the
questions and different collection methodology, the ABS cautions that census data should not be used for
prevalence estimate updates between disability survey years. Rather, the major strength of disability related data
from the census is in the ability to analyse small area and population sub-group data.
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Making choices: future dementia care
FIGURE 1-4: PRIMARY CARERS BY AGE AND GENDER, AUSTRALIA, 2003
90
Male
Female
Number of primary carers ('000)
80
70
60
50
40
30
20
10
0
< 18
18-24
25-34
35-44
45-54
55-64
65-74
75+
Age Group
Source: ABS (2005b).
Primary carers provide 54% of all care hours, despite representing only 20% of all carers.
Including non-primary carers, in 2005 over one in eight Australians (2.6 million people) were
providing informal care to a person who needs assistance due to disability, chronic illness or
old age. Three quarters of carers are of working age ie, 18-64 years (Access Economics,
2005b).
The National Centre for Social and Economic Modelling (NATSEM, 2004) highlights, also
using SDAC data, that Australians aged 65 years and older living at home supported by a
family carer outnumber those in residential aged care (RAC) facilities by a ratio of 5.6 to 1.5
The report concluded that:
‘We must ensure that the important role of unpaid carers and community care is
recognised as a high priority in supporting the ageing population and the needs
of carers are taken into account in planning and allocating resources.’
NATSEM refers to the ratio of females 50-64 years of age to persons aged 80 years and
over as the ‘caretaker ratio’. Modelling undertaken by NATSEM (Figure 1-5) shows that the
caretaker ratio is currently quite favourable for Australia, just falling below 2.5 ‘daughters per
parent’ (a crude metric interpretation). Under current population projections (high, medium
and low) the ratio will start to decline substantially between 2010 and 2025, continuing to
decline till 2050. The sharpest falls occur in the mid-2020s, mirroring the dependency ratio
pattern in Figure 1-2.
5
711,000 at home supported by family carers and 127,900 in RAC facilities (NATSEM, 2004:iii).
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Making choices: future dementia care
FIGURE 1-5: RATIO OF FEMALES 50 TO 64 YEARS OF AGE TO PERSONS AGED 80 YEARS AND OVER
(CARETAKER RATIO), AUSTRALIA, 2002-2051
Source: NATSEM (2004:13). A, B & C represent the ABS high, medium and low population projections,
respectively.
A number of factors are not taken into account in relation to IGR2 projections for aged care
services. One example is the trend towards single person households and the predisposition
of Generation X and Y, relative to their baby boomer parents, to live alone. On continuation
of current trends there will be a 90% rise in 65+ single person households from 1996 to 2021.
A primary determinant of RAC admission is living alone. Generation X and Y (0-44 year olds
in Figure 1-6) are also nearly 10% less prepared to provide primary care than the same
cohort five years earlier, despite the much greater overall need for care over the period,
which was met by other older Australians. Partly this may reflect circumstances and partly
attitude, and more research is needed to assess whether younger Australians will be less
willing to provide care than their parents and grandparents.
FIGURE 1-6: GROWTH IN NUMBER OF CARERS, BY AGE AND PRIMARY/NON-PRIMARY, 1998-2003
20%
Primary carers
Non-primary carers
15%
% change 1998 - 2003
Total carers
Population
10%
5%
0%
-5%
-10%
0-44
45-64
65+
All
Age Group
Source: Access Economics based on SDAC data.
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Making choices: future dementia care
In summary, in coming decades there will be a greater future need in Australia for
care services together with less propensity to provide informal care and far fewer
government resources available to pay for any type of care. This situation arises
from demographic ageing, epidemiological and generational changes and the
high elasticity of demand for health and aged care services. There is likely to be
increased policy emphasis on population, participation and productivity measures
that can mitigate against these factors. The impacts will be either greater fiscal
cost (higher taxation since higher debt is not sustainable long term), service
reductions (unlikely to be preferred), or an increase in private provisioning for
care services.
1.2
STRUCTURE OF THIS REPORT
Having set the context of this research in the previous section, the remainder of the report
addresses the key research questions relating specifically to dementia care, a fundamental
component of the issues discussed above. Literature findings specific to particular issues
are presented throughout the body of the report as appropriate to each section. The
following Section 1.3 summarises cross-cutting issues arising in the course of the literature
review (eg, international experiences, health and wellbeing impacts on carers, and carer
needs and interventions) that relate to a variety of different sections later in the report. The
remaining chapters of the report are structured in the following way.
Chapter 2 presents a summary of the dementia caring workforce in Australia in 2008,
including estimates of the number of informal (unpaid) carers, as well as formal (paid)
carers working in RAC or in community care settings. Estimates are also made of the
hours of care provided by these carers to people with dementia, and the value of that
care. The estimates for Australia are briefly compared with other estimates overseas.
Chapter 3 uses the information from Chapter 2 to project the number of people with
dementia previously estimated by Access Economics to estimate the ‘demand’ for care
hours for people with dementia in Australia in the future (to 2040) on the basis of
current trends. The methods and findings of a stated choice survey are presented,
investigating carer concerns regarding providing care and preferences for care in the
future, should they or a loved one develop dementia. Based on the survey findings, the
labour supply needed to meet the projected demand for dementia care is estimated,
including the balance between informal, residential and community care – and between
public and privately financed care options.
Chapter 4 then addresses the issues and challenges for policy that arise from the
review of data and literature, the projections and the survey, in planning for future
dementia workforce needs. Where supply and demand do not match, the reasons are
examined with conclusions in relation to the externalities at play and/or interventions
that could correct the imbalance by favouring a particular model of care that is in
relatively scarce supply. The relative prices of different models and who bears the
costs at the margins are relevant.
The final Chapter 5 draws together the discussion by providing a positively focused
conclusion with strategies and recommendations for long term sustainable care options
offering Australians choice and support in caring for people with dementia in the future.
Strategies would consider the effectiveness of different forms of family carer support,
consumer preferences for different models of care, methods of overcoming potential
capital, skills and workforce constraints, particularly in residential and community care
and, ultimately, strategies for prevention of dementia itself.
8
Making choices: future dementia care
1.3
LITERATURE REVIEW – CROSS CUTTING ISSUES
1.3.1
DEMENTIA DEFINITIONS AND SEVERITY
Dementia is a progressive and disabling condition, primarily of older people, that varies in
symptoms between individuals and also varies for the same individual over time, depending
on the parts of the brain affected and the characteristics of each person. Symptoms can be
broadly classified (Burns, 2001) as:
1
Cognitive impairment: Symptoms include problems with memory (amnesia), speech
or understanding of language (aphasia), a failure to carry out physical tasks despite
having intact motor function (apraxia), and failure to recognise objects or people
despite having knowledge of their characteristics (agnosia).
2
Psychiatric and behavioural features: There may also be any of a range of
psychiatric symptoms – such as depression, delusions, hallucinations (visual and
auditory) – and behaviours such as wandering, incessant walking or agitation. A
number of behavioural features derive from a person’s response to the confused
situation in which they find themselves, such as repetition, following or crying.
3
Dysfunction in activities of daily living (ADL): In the early stages of dementia these
can take the form of difficulties with shopping, driving or handling money. In the later
stages more basic tasks are affected such as dressing, eating and bathing.
Greater detail regarding dementia symptoms, classification, diagnosis, risk factors and
treatment in Australia are provided elsewhere (eg, Brodaty et al, 2003; Access Economics,
2003). This literature review focused primarily on factors particularly relevant to care issues.
Care provided to people with dementia is varied. It comes from a wide range of sources and
depends on the stage of dementia. Generally, five stages can be identified: diagnosis, early
stage, intermediate stage, late stage and end of life stage. Dementia can also be classified
by severity: mild, moderate and severe. However, since dementia can be difficult to
diagnose, people may already be in a later stage when the disease is detected (often
moderate to severe dementia). Furthermore, the distinction between stages is not precise
and people move through stages at different rates. On average, people with dementia have a
life expectancy of 7-10 years after diagnosis (Warner and Butler, 2000).
As people with dementia move through the different stages, their requirements for care
change. While informal care (though family and friends) dominates during early stages of the
disease, the family carer may require assistance from formal care services (respite care or
adult day-care) when the disease worsens. If no informal care is available, community care
may need to be provided from an early stage onwards. While formal non-institutional care is
usually sufficient at the beginning, people may require institutional care at a later stage of
dementia (Moise et al, 2004).
Due to the continuum of both the condition and the provision of care, estimates on the impact
of care giving should be treated with caution, especially when comparing international
figures, as approaches to treating dementia and caring for people with dementia may differ
significantly between countries (eg, the use of pharmacotherapies may affect functioning or
the availability of respite care may reduce the burden on family carers).
9
Making choices: future dementia care
1.3.2
DEMENTIA CARE: INTERNATIONAL EXPERIENCE
In the last few decades, there has been a shift away from institutions and towards
community-based services to care for the elderly as well as people with dementia. This
included the discharge of people from long term care institutions as well as a shift in service
delivery from that dominated by institutional care to a larger proportion being based outside
the institutions. The idea behind the ‘ageing in place’ shift was that care outside an
institution is likely to result in a higher quality of life for the person and that public sector
expenditure on institutional care would be reduced, while less expenditure would be needed
to support a person with dementia in the community. However, there is some concern that
extended community care may lead to an increased burden on the carer and family and that
the increase in severity of cases in institutional care may put pressure on staffing and other
resources (Moise et al, 2004).
Table 1–3 shows how nine OECD countries approach dementia care and the range of
services available to people with dementia and their carers as dementia care needs move
from informal care to institutional care. Ideally, the care continuum for dementia should be a
seamless process and carers should be supported in the delay of institutionalisation. As the
table was compiled in 2004, its content reflects that period; for example, in Australia, the
dementia measures announced in the 2005-06 Budget are not reflected (eg, EACHDementia packages).
10
Making choices: future dementia care
TABLE 1–3: COMPARISON OF DEMENTIA CARE IN NINE OECD COUNTRIES
Education and
Training
Financial support
Respite care
Carer Education
and Workforce
Training Project
(short-term)
Carer payment (for
full time carer)
Residential Respite
(short-term care in RAC
facilities)
ADL (activities of daily
living) & nursing help
---
ADL & nursing help
Personalised
allowance for
autonomy
Respite hospitalisation
program
---
Germany No dementiaspecific program,
but participation in
educational
programs is free of
charge.
Long term care
(LTC) insurance
Day centres
Japan
LTC insurance
Australia
Dementia
Education and
Support Program
Dementia Hotline
Canada
(Ontario)
---
Carer Allowance (for
heavy caring
responsibilities)
Financial assistance
with home
modifications
Income-restricted
carer tax credit
Dementia-specific
education
programs at AD
organisations
---
Community Care Access
Community Care Access Centres determine
eligibility for & authorise
Centres
admission to LTC
facilities.
---
Dementia-specific home Short-term, part-time (day
care (through LTC
or night) and full-time
Supp. Act)
institutional care is
available.
LTC Supp. Act for
dementia
60% of residents have
dementia.
Contribution to
pension insurance
Tax relief
Chosen as last resort.
Seldom a deliberate
choice for the elderly.
Group living
Group living
ADL & nursing help
Service provision
depending on patient
need (covered through
LTC insurance)
Spain
Long term care facilities
People with a high level of
disability and care needs
(assessed by ACATs)
Home and Community
may be admitted (40% of
Carer Respite Centre (at Care Program:
day care centre or at
Community Aged Care & people with dementia are
in aged care homes).
home)
Extended Aged Care at
Home
30% of residents have
dementia.
Sales tax exemption
for respite care
(15%)
France
Community care
Expert centres (run by
medical services)
Assisted living
People aged 65+ needing
nursing care, who are
insured by LTC insurance
may be admitted.
Systematic ADL and
Admission depends on
nursing help services are existence of carer among
being developed.
the person’s relatives.
Varying levels of medical
care provided.
Sweden
No dementiaspecific program,
but small support
groups.
Carer payment (as
1-2 weeks short-term
high as formal home- respite care
helper payments for Respite care at home
working age carers)
Regular shift model
(home/care centre)
ADL help
Dementia-specific
community care.
Eligibility varies among
municipalities
Group living
UK
US
---
No dementiaspecific program,
but private
organisations
provide information
and education.
Carer’s allowance
Day centres
ADL & nursing help
Respite admissions to
hospitals, nursing
homes or residential
homes
Dementia-specific
community care. Care
from registered nurse is
provided free by NHS.
Cash payments or
Available in most states. ADL help
vouchers for services Service delivery and
Medicaid-eligible people
funding varies.
and supplies
can get services. For
Tax credit (30%)
home health care,
doctor’s certification is
needed.
Those elderly who are in
very extensive need of
care and attention may be
admitted.
Some special dementia
care units exist within
nursing home facilities.
Means tested admission
to LTC facilities.
Nursing care is available
for free to everyone in
care home who needs it.
More than half of the
Medicaid funding is spent
on institutional care.
50% of residents have
dementia.
Source: Moise et al (2004).
Wimo et al (2007) estimated the worldwide societal costs of dementia in 2005. Their
literature review showed that the weighted institutionalisation rate was around 27%,
hence 73% of dementia people were assumed to live at home with informal care.
Bosanquet et al (1997) show that the proportion of people with dementia in home care
11
Making choices: future dementia care
versus residential or hospital care varied between countries. In 1997, 62% of people with
dementia in France and 60% in the UK were in home care compared with 82% in Germany
and 80% in Italy. Alzheimer Europe (2007) found that an average 84% of people with
dementia were cared for at home.
In the United States (US), the value of family caregiving was estimated as US$350 billion in
2006,6 concluding that the contributions of family carers are the foundation of the nation's
long term care system. The study also showed the economic consequences for carers in the
work force (time off, partial days, lower wages, lack of job security, and loss or reduction of
employment benefits like health insurance, retirement savings and Social Security). For
those with the most intense level of caregiving responsibility, 92% reported major changes in
their working patterns; 83% arrive late, leave early or take time off during the day; 41% report
taking a leave of absence; and 37% report going from full-time to part-time to adjust for their
care giving responsibilities. Additionally, the carer's own health is often at risk. They are more
likely to have chronic health conditions and medical debt than non-carers. The study also
showed that most family carers are women employed full or part-time, 19% of all US workers
are carers and productivity losses to US businesses associated with caregiving are
estimated up to US$33 billion a year. The study concluded there is a need for better
government and private sector options for long-term care as family carers help delay or
prevent the use of costly nursing home care, which has positive budget impacts for Medicaid
($59 billion per year is spent on nursing home care) and Medicare ($22 billion).
1.3.3
HEALTH AND WELLBEING IMPACTS ON CARERS
Caring for a person with dementia can have a negative impact on the health and wellbeing of
the carer (Access Economics, 2005b), particularly if care is provided to a close family
member. The 2003 SDAC explored the effects of primary care responsibilities on the family
carer’s health and relationships and found that only 25.6% of these carers felt satisfied with
their caring role, while 72.4% of primary carers experienced some form of physical or
emotional effect from providing care – 29.2% felt worried or depressed, 28.9% felt their
wellbeing had been affected and over 10% had a stress related illness (ABS, 2005a).
Furthermore, 44.5% of primary carers reported that their sleep was interrupted due to the
requirements of their caring role (with 46.4% of those having frequent interruptions to their
sleep).
Caring for a person with dementia can be particularly challenging due to the characteristics
of the condition and for many, may be more burdensome than caring for adults with other
chronic conditions and disabilities. While Ory et al (2000), Ory et al (1999) and Grafström et
al (1992) provided evidence that caring for a person with dementia affected carers’ health,
Schofield (1998), Light et al (1994) and Morris et al (1988) showed that caring for a person
with a cognition-impaired disability such as dementia was more burdensome than caring for
a person with a physical disability. Carer stress is caused by both primary stressors (care
recipient characteristics) and secondary stressors (family and work issues) and depends on
the balance between demands and the ability to meet them.
Types of stress burdens are developmental, physical, social and emotional, but stress can
also be time dependent (ie the stress level may vary over time). Psychiatric consequences
include high incidence of anxiety disorders and depression – according to Dura et al (1990)
and Teri (1994), 25% to 70% of dementia carers suffered depression. Chronic stress can
also result in physical consequences such as impaired immune function, elevated blood
6
AARP Public Policy Institute study, Valuing the Invaluable: A New Look at the Economic Value of Family
Caregiving available on http://www.aarp.org/research/housing-mobility/caregiving/ib82_caregiving.
12
Making choices: future dementia care
pressure, abnormal plasma lipid levels and poor self-care such as sleeplessness and lack of
exercise (Haley, 1997). Furthermore, care giving stress often does not end with
institutionalisation of the care recipient and may continue even after the care recipient’s
death (Volicer, 2007). The carer burden can also manifest in increased use of medication
and more primary care visits (Haley, 1997). The carer burden depends on specific symptoms
of dementia, but does not always depend on frequency and severity of these symptoms, as
agitation/aggression and irritability/lability have a large effect, but a low frequency and
severity (Matsumoto et al, 2007). Health impacts can also have a financial impact through
lost productivity. Wilson et al (2007), for instance, showed that those family carers for people
with dementia who suffer depression as a consequence of care provision missed an extra
half-day of work per month – not due to caring directly but indirectly due to their own (caringinduced) ill-health.
National Alliance for Caregiving and AARP (2004) fielded a survey that made the following
findings.
Nearly one in four of the carers of people with Alzheimer’s disease and other
dementias provide 40 hours a week or more of care. 71% sustain this commitment for
more than a year, and 32% do so for five years or more.
Of Alzheimer’s carers, 65% perform physically demanding kinds of personal care – for
example, bathing, feeding, helping the person to the toilet and dealing with loss of
bladder or bowel control. These tasks are made more difficult by the confused and
disoriented state of the person with dementia, who may be unable to help with the
tasks or may resist assistance from the carer.
Carers of people with Alzheimer’s disease and other dementias are much more likely
than other carers to help with loss of bladder or bowel control (32% of
Alzheimer/dementia carers, compared with 13% of other carers) and bathing (35% vs
25%).
These challenges often affect the health and income of carers of people with
Alzheimer’s and other dementias. Over 40% of these carers report high levels of
emotional stress. Many of them are working full- or part-time, but their work
responsibilities can be seriously affected by the demands of caregiving.
Almost one-quarter of carers of people with Alzheimer’s and other dementias report
that caring for their family member is very stressful, compared to 15% of other carers
who reported that high a level of stress.
Two-thirds of working carers of people with Alzheimer’s and other dementias report
that they missed work because of caregiving responsibilities, compared with 57% of
other carers.
Of working carers of people with Alzheimer’s and other dementia, 8% turned down a
promotion (4% of other carers), and 7% lost job benefits (3% for other carers).
Almost a third of carers of people with Alzheimer’s and other dementias got less
exercise than they did before they began their caregiving, compared with about a
quarter of other carers.
A recent study found that among elderly people, hospitalization of a spouse for
dementia was associated with an increased risk of death for the non-hospitalized
partner. Among men, 8.6% died within a year after a spouse’s hospitalization for
dementia compared to 6.4% that died after a spouse’s hospitalization for colon cancer
and 6.9% after a spouse’s hospitalization for stroke (it is not clear if this is agestandardised). Among women, the rate was 5% in the year after a spouse’s
hospitalization for dementia compared to 3% that died after a spouse’s hospitalization
for colon cancer and 3.7% after a spouse’s hospitalization for stroke.
13
Making choices: future dementia care
Caregiving (in general, not only to people with dementia) is related to reduced labour force
participation and in turn, poorer health outcomes. An examination of middle aged women
across surveys three and four of the Australian Longitudinal Study on Women’s Health
(ALSWH) found:
women who did not provide care at either survey were more likely to work full-time and
less likely not to be in the labour force than those who did provide care at either survey;
carers at both surveys were more likely not to work, or to work part-time compared to
non carers;
women who started caring were more likely to cut down on working than those who did
not start caring; and
women who stopped caring were more likely to increase working than those who did
not stop caring.
Comparing women who quit work or reduced work when starting care with carers who
maintained hours of paid employment, the ALSWH data suggest a therapeutic effect of
employment for carers. The results indicated that women who left or reduced work were
more likely to be stressed, to report only poor to fair health and report frequent visits to a GP
compared to women who maintained hours of paid employment when starting care.7
Eager et al (2007) confirmed:
the high level of burden and mental distress in spouse carers of people with dementia;
limited evidence that respite care is having a measurable effect for dementia carers;
strong evidence for educational and psycho-educational interventions;
the success of family support interventions was promising but is dependent on the
timing and careful selection of families based on emotional characteristics; and,
that people caring for a person with dementia are ‘less likely than others to benefit from
(multi-component) interventions’.
Overall, the Eager et al (2007) report recommended that in the future there should be more
robust support for carers. This should be based on detailed assessment of carer needs
taking into account the family unit, benchmarks to measure carer support services and carer
outcomes, increased links between care recipient and carer data, better access to services
taking into account cultural or linguistic barriers and previous negative experiences of, in
particular, older carers, and finally better alternate models of funding for carers including reemployment programs.
1.3.4
CARER NEEDS AND INTERVENTIONS
Surveying carers in NSW, Leong et al (2003) found the major unmet needs by dementia
carers were ‘to know someone will provide care if I become ill’, ‘a telephone hotline I call if I
needed further information’, ‘to have time for myself’, ‘ways to deal with my stress’, ‘to have a
physical rest’ and ‘ways to deal with my feeling of being trapped’.8 Overall, respite was one of
7
This conclusion from the ALSWH is drawn in: Department of Families, Housing, Community Services and
Indigenous Affairs; Department of Health and Ageing and Department of Veterans' Affairs (2008) Submission
No.1109 Inquiry into Better Support for Carers., Submission No. 1109 to the House of Representatives Standing
Committee
on
Community
Affairs,
Housing
and
Youth,
available
at
http://www.aph.gov.au/house/committee/fchy/carers/subs/sub1109.pdf
8
These concerns are addressed to some extent through the National Dementia Helpline on 1800 100 500,
although many people may remain unaware of available help.
14
Making choices: future dementia care
the most frequently mentioned needs. International studies (typically using a mixture of semistructured interviews or questionnaires) showed similar unmet needs. Increased day care
and respite, for instance, were needs mentioned by United Kingdom (UK) carers (Armstrong,
2000).
Asked about their experiences in relation to combining work and care, Australian carers (in
general, not only dementia carers) often feel undervalued and that their experiences are
misunderstood by employers and co-workers. They also have difficulties in balancing work
and caring responsibilities and work in roles below their skill level to allow for more flexibility.
Edwards et al (2008) found the main barriers to employment identified by female carers
(again in general, not specific to dementia) who were not in the labour force but would like to
work were:
no alternative disability care arrangements available;
would be too disruptive to the person with the disability;
difficult to arrange working hours; and
age.
The ACTU (2008) in a submission to the Inquiry into Better Support for Carers, put forward a
range of recommendations focused on assisting carers to combine paid work and caring
responsibilities. Suggested interventions included:
making changes to the National Employment Standards (increased rights to unpaid
leave, paid carer’s leave, and palliative care leave);
promoting the provision of flexible working arrangements (including through relevant
workforce regulation);
increasing resources for carers such as day care, information and referral services;
providing increased access to community based care programs;
providing targeted employment programs (including training) for carers looking to reenter the paid workforce; and
initiatives to increase the attractiveness of paid caring as a profession.
Carers report finding support services inadequate, difficult to access and fractured across
Government departments as well as Australian and state/territory governments, and financial
support is seen as insufficient (TOCC, 2007). Hence, there is some evidence of the need to
enhance service provision, ensure greater access to flexible work practices and increase
financial support.
Analysing results from evaluative research and systematic reviews of Australian and
international literature, Eager et al (2007) showed that existing programs to support carers (in
general, not only dementia carers) in their role have not been very conclusive. Information
giving, respite care and support groups appear to be of limited benefit, while educational and
psycho-educational interventions (especially for dementia carers), care coordination and
multi-component interventions have some positive effects. More care research is needed to
provide better data on what is most effective, appropriate and cost effective.
Looking at dementia-specific training, Gormley (2000), for instance, concluded from literature
from around the world that only comprehensive and multidimensional intervention programs
had positive results, while training/education alone was of limited value, as it had little impact
on carer wellbeing or behavioural symptoms. Raivio et al (2007) analysed the support
services available for dementia carers in Finland and found that official services (including
financial support, technical services, physiotherapy and respite care in nursing homes) poorly
15
Making choices: future dementia care
met the needs of the carers, particularly due to poor control over received services,
difficulties in getting information about the services and lack of collaboration with care giving
families. Other unmet needs included physiotherapy and rehabilitation as well as
housecleaning. Pot et al (2006) showed that paid home care does not necessarily help to
relieve stress, as the onset of paid home care was often associated with increases in family
carers’ feelings of worry and strain. Similarly, Proctor et al (2002) found that there was an
association between increased knowledge and higher levels of anxiety, while Hooker et al
(2002) found that residence in a long term care setting is associated more highly with stress
(however, this can partly be explained by the worsening of the condition which makes long
term care necessary).
Summary: In terms of caring for people with dementia, currently there are three
distinct types of carers: (1) informal (unpaid) carers providing care usually for a
close family member and formal (paid) carers providing care in (2) the community
or in (3) residential care facilities. Care needs vary depending on the stage of
dementia, its variable symptoms, and the context of the individual. Around the
world, the large majority of people with dementia are cared for at home, reflecting
the lack of facilities in developing countries and a move to a philosophy of
community care and ‘ageing in place’ in developed countries.
Caring for a person with dementia can have a negative impact on the health and
wellbeing of the carer, particularly family carers over longer periods – in terms of
depression, anxiety, stress, physical health impacts and sleep disruption – more
so than for adults with other conditions. Carer burden is caused by primary
stressors (care recipient characteristics eg, particular behaviours) and secondary
stressors (eg, family and work issues). Access to flexible support, information
and respite services remain key needs for family carers, together with workplace
and community understanding. All carers need to be valued, and evidence
suggests that comprehensive, multidimensional dementia-specific training is of
benefit.
16
Making choices: future dementia care
2. THE DEMENTIA CARING WORKFORCE IN 2008
The dementia caring workforce in Australia is a subset of the overall caring workforce,
comprising (unpaid) family carers and paid carers working in RAC or in the community. This
chapter describes each of the three types of care settings and estimates the number of
carers in each, hours provided and the value of care. The chapter weaves in comparisons
from findings of similar studies overseas.
2.1
FAMILY CARERS FOR PEOPLE WITH DEMENTIA
In 2005, an estimated 2.6 million Australians were providing informal care, 494,000 of which
were primary carers (Access Economics, 2005b). For men, the likelihood of providing
informal care increased steadily as they aged. Women experienced an increased likelihood
of providing informal care up to the age of 65 years, when the propensity to care began to fall
(partly due to the loss of parents and male partners due to lower male life expectancy).
2.1.1
PRIMARY AND NON-PRIMARY CARERS – DEMOGRAPHIC PROFILE
For dementia-specific informal care in Australia, StollzNow Research (2007) conducted a
survey of 1,000 households.
Of the total sample, 3.4% of households were involved in caring for a family member
or friend with dementia.
Of those carers, 87% were female.
On average, the carer had been in this role for 3.38 years.
While the majority of carers indicated that they spend less than five hours per week
looking after a family member or friend with dementia, the average amount of time
spent as a carer was 16.11 hours per week, as 18% spent 40 hours or more per
week.
Moreover, while 51% received one or more community care services, 44% received
no community care services.
One in three carers had received training or education, while just over one quarter
(26%) indicated that they had used the services of Alzheimer’s Australia on at least one
occasion.
One in two carers had made some change to be a carer of a person with dementia
such as living arrangement (15%), more flexible work arrangement (10%) or quitting
their full time job (6%).
Access Economics submitted a detailed data request to the Australian Bureau of Statistics
(ABS) seeking information from SDAC on those carers whose care recipient’s main condition
was dementia or Alzheimer’s disease. However, due to issues in relation to SDAC design
which leads to under-enumeration, the ABS was only able to supply a small quantity of the
data requested and the data supplied were subject to sample size problems. Bearing in
mind these caveats, and the fact that information from the same data source as analysed by
the AIHW (2006) is referred to elsewhere in this report, the data that were supplied by the
ABS are summarised as follows.
In 2003, 101,900 Australians reported a main condition causing disability from
dementia or Alzheimer’s. Of these people, 97% were aged over 65 years and 72%
were female (Table 2–1). Furthermore, 26% (26,600) reported living in households
17
Making choices: future dementia care
only, with the majority (74% or 75,300) living in cared accommodation including
hospitals, nursing homes or hostels for the aged, cared components of retirement
villages or other ‘homes’.
TABLE 2–1: SDAC ESTIMATES OF AUSTRALIANS WHOSE MAIN CONDITION WAS DEMENTIA OR
ALZHEIMER’S, BY AGE AND GENDER, 2003
‘000 Australians
Age group
15-65
Over 65
Total
Male
Female
% total
Total
Male
Female
Total
1.8
27
0.9
72.1
2.8
99.1
1.8%
26.5%
0.9%
70.8%
2.7%
97.3%
28.9
73.0
101.9
28.4%
71.6%
100.0%
In 2003, 13,200 Australians reported caring for a person whose main condition was
dementia or Alzheimer’s. Of these, 58% (7,700) were primary carers and,
coincidentally, the same proportion were aged 15-65 years (with the remainder aged
over 65 years). Males comprised 53% (6,900) of dementia carers reported in SDAC.
None of the primary carers provided less than 20 hours of care per week; 66%
provided 40 hours care of more and 22% provided 20-40 hours (12% of responses
were not stated or not applicable). Based on these data, the average hours of care
provided by a primary carer for a person with dementia is estimated indicatively to be
around 38 to 42 hours of care per week9.
In contrast to these findings, the AIHW (2006) Dementia in Australia report estimated
that, according to the same 2003 SDAC data, there were 23,200 (±7,800) carers who
provided assistance to a co-resident person with dementia (65% of carers of people
with dementia are co-resident). Around 12,200 were primary carers.
The survey conducted by Access Economics found that 24.4 hours per week of
informal care is provided on average (Section 3.3.2), with a bi-modal distribution
(Figure 3-5) reflecting that informal care can complement residential care in smaller
amounts than when informal care is provided to a person with dementia living in the
community (discussed further in Section 3.2.1).
2.1.2
CARE HOURS AND SEVERITY OF DISABILITY
The more severe a person’s disability, the greater the amount of time devoted to caring by
that person’s primary carer. The 2003 SDAC showed that 48.4% of primary carers for people
with any reported disability (but 64.0% of primary carers for people with profound coreactivity limitation) provided 40 hours or more care per week. Furthermore, 21.3% of all
primary carers provided 20-39 hours care per week.
Looking at dementia-specific care time, Misplon et al (2004) investigated the need for care of
elderly people with dementia (compared with a control group of people not suffering from
dementia) in the Netherlands.
Dementia carers spent 38 hours per week caring for a person with dementia, while
carers of elderly people without dementia spent 16 hours per week. This triangulates
well with the SDAC data provided by special request presented in the previous section.
9
22%/(22%+66%)=25%. 66%/(22%+66%)=75%. 30=midpoint of 20-40. Midpoint of 40+ estimated from overall
distribution as between 41-46. Hence 25%*30+75%*41=38 and 25%*30+75%*46=42.
18
Making choices: future dementia care
Professional care and costs of materials did not differ significantly between the
dementia group and the control group. Professional care (including home help and
cleaning, nurse, social work, physiotherapist, general practitioner) was 5.3 hours per
week on average (6.5 hours for the dementia group, 4.5 hours for the control group).
Anders (2002) found that the time spent on caring by families of people with dementia in
Sweden was 69 hours per week for family carers and eight hours per week for formal
carers. However, some carers carried a very heavy 24 hour per day responsibility.
Wimo et al (2007) found that, in advanced economies, these people received around 1.6
hours of informal care per day on average (amounting to 11.2 hours per week).
Ostbye and Crosse (1994), when estimating the net economic costs of dementia in Canada
for 1991, analysed the average time requirement for informal care by severity of dementia.
People with mild dementia required 581.5 hours of informal care per year (11.2 hours per
week) compared with 804.5 hours per year (15.5 hours per week) for people with moderate
dementia and 1,174.8 hours per year (22.6 per week) for people with severe dementia.
Control subjects only required 227.2 hours of informal care per year (4.4 hours per week).
They also included estimates of time spent on individual activities in the report (eg, preparing
meals for a person with mild dementia required an average of 5.2 hours per week),
illustrating which activities require the most help as the condition worsens. They found that,
while the time spent preparing meals and doing housework remained fairly constant, the time
spent on providing help for eating, dressing and personal care increased substantially as
dementia became more severe.
2.1.3
VALUE OF INFORMAL CARE – METHODOLOGY
Informal care is provided free of charge, but is not free in an economic sense, as time spent
caring is time that cannot be directed to other activities such as paid work or leisure. As
such, informal care is a use of economic resources.
There are three potential methodologies that can be used to place a dollar value on the level
of informal care:
the opportunity cost method – which measures the formal sector productivity losses
associated with caring, as time devoted to caring responsibilities is time which cannot
be spent in the paid workforce;
the self-valuation method – which measures that carers themselves feel they should
be paid; and
the replacement cost method – which measures the cost of ‘buying’ an equivalent
amount of care from the formal sector, if the informal care were not supplied.
The self-valuation method is not commonly used, and there are no reliable Australian studies
of the amount Australian carers feel they should be compensated. Interestingly, an Irish
study of dementia carers provided a very low figure, of between £2 to £4 per hour in 2000
prices (O’Shea, 2000) – around A$5 to A$10 per hour in 2008 prices, converted using OECD
purchasing power parities (PPPs) and inflation of 2.5-3.0% per annum (2.9% per annum is
preferred based on recent historical data).
Estimates of the value of informal care are very sensitive to the estimation methodology
used. In this study, the opportunity cost method is used to estimate a lower bound of the
value of informal care, and the replacement cost method for the upper bound estimate.
These calculations are provided in the next Section 2.1.4 – the remainder of this section
provides further context regarding the value of care relevant to the calculations.
19
Making choices: future dementia care
Opportunity cost – employment status of carers
The SDAC found that carers are more likely to be unemployed or not participating in the paid
workforce than those who are not carers. Only 19.2% of primary carers were in full-time
employment compared with an Australian average of 42.0%. Conversely, carers are more
likely to be in part-time work (22.8% of primary carers were in part-time employment
compared with an Australian average of 17.2%) (Access Economics, 2005b). Based on
these employment rate differentials together with ABS data on AWE, the opportunity cost of
time devoted to informal care, measured as reduction in paid employment due to caring, was
estimated by Access Economics as 2005A$4.9 billion (0.6% of GDP and 2005A$1,875 per
carer per annum). This measure reveals the resources that are diverted each year from
production in the formal economy to informal care.
TOCC (2006) further found that in Australia one in four employees with caring responsibilities
is likely to leave the workforce because of the impact of care; one in four employees with
caring responsibilities has already reduced their hours of work because of the impact of care;
35% of employees with caring responsibilities would increase their hours of work if formal
care was more affordable; and lack of access to formal care influenced the departure of 64%
of employees with caring responsibilities from the workforce.
Looking at employment of dementia carers overseas, Alzheimer Europe (2007) found that
half of the dementia carers participating in the survey were retired and only 22% were in fulltime employment. Alzheimer’s Society (2007) found that 15% of family carers of people with
dementia had altered their employment arrangements: 9% had reduced their hours of work,
while 6% had changed their hours of work without reducing them. One fifth of carers of prestatutory retirement age had given up work, while half of those of pre-statutory retirement
age who were not working claimed that caring was the main reason for not seeking paid
employment. Ory et al (2000) showed that there were significant differences between
dementia and non-dementia carers in terms of employment: compared to non-dementia
carers, dementia carers were less likely to report being employed full-time or part-time
(61.6% vs. 68.3%) and more likely to be retired (16.6% vs. 10.8%).
Replacement value of informal care
Access Economics (2005b) derived an estimated replacement value of 2005A$25.01 for an
hour of care. For the 2.6 million Australians providing informal care in 2005, each carer
provided an average of 470 hours of care per annum (or nine hours of care per week), which
amounted to 1.2 billion hours of care in Australia in 2005. At 2005A$25.01 per hour this was
equivalent to a replacement value of $30.56 billion for all informal care in that year, or
2005A$11,755 per carer per annum.
Overseas triangulation
Alzheimer’s Association (2007) estimated the cost of informal care in the US based on an
average hourly wage for paid workers to be US$8,469 per person with dementia (with an
estimated US$83 billion in informal care costs and 9.8 million carers). This translates almost
perfectly (2005A$11,758) with the Australian estimate above for all informal care using
OECD PPP of 2005US$1=2005A$1.39.
Looking at the economic costs of dementia in Canada in 1991, Ostbye and Crosse (1994)
estimated the net cost of informal dementia care (unpaid services) to be C$5,130 per person
based on a replacement valuation approach (using the value of C$10 per hour as an
estimate of fees that would have otherwise been paid to private agencies for home health
care services) – around 2005A$11,397 using OECD PPP of 1991C$1=1991A$1.10 and
20
Making choices: future dementia care
inflation of 2.9% per annum. This also triangulates well with the Access Economics (2005b)
estimate for all carers.
Some estimates, however, are much higher than the Access Economics (2005b) estimate –
potentially taking into account the additional carer burden for carers of people with dementia
relative to carers of people with other conditions.
Alzheimer’s Society (2007) estimated the annual cost of informal care inputs by family
members and other unpaid workers in the UK to be £9,170 per person per annum
(36% of the total financial cost of dementia) – around 2005A$19,620 per person per
annum using OECD PPP of 2005UK£1=2005A$2.14.
For the US, the highest estimate was provided by Moore et al (2001), who calculated
the annual cost of providing informal care to elderly community-dwelling veterans with
dementia to be US$18,385 per person in 1998 – around 2005A$29,399 per person per
annum using OECD PPP of 1998US$1=1998A$1.31 and inflation of 2.9% per annum.
He also noted that costs increased with disease severity and problem behaviour.
Wimo et al (2007) estimated the worldwide opportunity cost of informal dementia care for
2005 using average wage by country – again providing higher estimates than Access
Economics (2005b) opportunity cost estimate. In North America and Oceania, costs were
highest: the average cost of informal care per person per annum was US$6,775 (A$9,406)10
in North America and US$6,328 (A$8,786) in Oceania. In Europe, the average cost was
US$4,949 (A$6,871). The world average was US$3,506 (A$4,868), while the average for
advanced economies was US$6,234 (A$8,655).
Suh et al (2002) estimated the cost of informal dementia care and missed work of carers in
Korea to be US$4,779 per dementia person (based on 272,000 people and informal costs
amounting to US$1.3 billion) – around 2005A$6,959 using OECD PPP of
2002US$1=2002A$1.34 and inflation of 2.9% per annum. This sits in the middle of Access
Economics (2005b) opportunity and replacement cost estimates.
2.1.4
VALUE OF INFORMAL CARE AND COST TO BUSINESS
Alzheimer’s Association (2002) estimated the cost of dementia to US businesses in 2002,
finding the cost to American businesses was more than $61 billion of which $36.5 billion was
the productivity lost from family caregiving – absenteeism, productivity losses and
replacement costs – as workers attempt to balance their responsibilities for a person with
Alzheimer’s disease with their obligations on the job. Carer absenteeism was estimated to be
23.82 days per year at 7.5 hours per day ie, 3.4 hours per week. The cost of absenteeism of
full time workers who are carers was estimated to be US$4,976 per annum per person
(based on an income of $208.90 per day and 23.82 lost working days per year). In addition,
losses to businesses were greater than the worker’s salary and benefits costs when absent,
due to lower productivity when at work as a consequence of a number of factors. These
factors include missed training, rejection of opportunities and business travel, higher stress
on other workers, distractions (for the worker eg, phone calls) and replacement costs
(including termination cost, cost of hiring a replacement worker, cost of training a
replacement worker, vacancy cost until the job is filled and productivity attenuation until the
new hire is up to speed). Up to 20% of carers either leave work permanently or temporarily
during an average caregiving duration of 4.5 years, so there were also the costs of
temporarily replacing workers and continued insurance for workers on leave.
10
All US dollar estimates are converted to Australian dollars using OECD PPP of 2005US$1=2005A$1.39.
21
Making choices: future dementia care
In Australia, the value of informal care in 2008 has been based on the cost per carer hour
calculated in 2005, converted to 2008 prices using an inflator of 2.9% per annum – ie, $27.15
per hour. The average hours of informal care of 24.4 hours per week from the survey
(Section 3.3.2, with the distribution of hours in Figure 3-5) was used as this is consistent with
the later modelling and appears more robust than the (higher) SDAC primary care data and
the (lower) StollzNow Research (2007) estimates.
In 2008, people with dementia received around 203 million hours of informal
(unpaid) care at an estimated cost per annum per person of $33,367 using
replacement valuation and $5,323 using opportunity cost valuation. The
productivity loss using the former approach and an average hourly valuation rate
of $27.15 amounts to $5.5 billion per annum, while the latter approach amounts
to $881 million per annum. Only the opportunity cost method can be thought of
as being borne by business, individuals and government (in lost taxation
revenue). The replacement valuation can be thought of as the gross cost of
replacing the family carers with paid carers. The informal care cost using either
method includes only the carer’s personal time component and does not include
supplementary outsourced care or other support services, capital components
(eg, building depreciation, equipment or home modifications) or other cost inputs
(eg, incontinence pads, alarms, and so on). In total there were an estimated
165,538 people providing informal care to people with dementia in 2008.
2.2
RESIDENTIAL AGED CARE WORKFORCE
The workforce in RAC facilities includes employees, contractors and volunteers. Direct care
workers (nurses, physiotherapists, personal care staff and nurses assistants) as well as other
staff (managers, cleaners, cooks, gardeners etc) are required. The composition of the
workforce (as a proportion of wage costs) based on provider data supplied to the Hogan
Review (2004) is in Table 2–2. In 2003, direct care workers accounted for nearly three
quarters of all staff in RAC.
TABLE 2–2: RAC STAFF CATEGORY AS A % OF WAGE COSTS, 2003
Staff category
%
Care and therapy
Hotel/accommodation
Cleaners/domestic
Laundry
Kitchen
Support staff/managers
Maintenance/gardeners
Clerical/admin
Other
73.5
3.6
5.8
1.3
7.8
0.9
1.6
4.8
0.7
Total
100
Source: ACIL Tasman (2003:16).
2.2.1
PREVIOUS ESTIMATES OF THE DEMENTIA CARE WORKFORCE IN RAC
FACILITIES
As far as we are aware, there are no studies that have estimated the RAC workforce
allocated specifically to dementia care. Previous estimates of the total RAC workforce reflect
22
Making choices: future dementia care
differences across data collections in definitions, coding, and data collection methods. Some
estimates of the RAC workforce are summarised below. Note that the time periods differ and
that estimates are for the number of staff, not full-time equivalents.
National Institute of Labour Studies (NILS) (2003) enumerated various data sources
available with estimates of the RAC direct care labour force in Australia. Direct care
staff were defined as those who are directly caring for residents including registered
nurses, physiotherapists, enrolled nurses, personal care assistants and nursing
assistants. Medical practitioners or other staff such as purely administrative staff,
cooks, gardeners and cleaners were excluded. NILS (2004) estimated that there were
116,000 direct care workers (including agency workers) in nursing homes or aged
accommodation facilities in 2003, including 25,000 registered nurses, 15,000 enrolled
nurses, 67,000 personal carers and 9,000 allied health workers (eg, diversional and
recreational officers).
Access Economics provided projections of the number of hours of direct care provided
to residents of RAC facilities for Hogan (2004). The chart below (Figure 2-1) is a
reproduction of Figure 7-6 from Hogan (2004). While the numerical estimates behind
the chart are not able to be provided in this context, the chart suggests that in excess
of 100 million hours of direct care are likely to be provided in RAC facilities in 2007-08,
rising to between 500 and 600 million hours by 2042-43.
FIGURE 2-1: HOURS OF DIRECT CARE PROVIDED TO RAC RESIDENTS, 2002-03 TO 2042-43
Source: Hogan (2004)
Hogan (2004) reported data from the ABS Community Services Survey for June 2000
(the most recent available) showing that 131,230 people were employed by the private
sector in RAC, which comprises the ‘Nursing homes’ industry (ANZSIC 8613) and the
‘Accommodation for the aged’ industry (ANZSIC 8721). Another 32,628 people worked
in the RAC sector as volunteers in June 2000. Note these data do not include aged
accommodation operated by governments.
23
Making choices: future dementia care
Estimates of volunteers working in nursing homes and accommodation for the aged
from the same survey, reported in ABS (2004), suggested there were: 15,751
volunteers in the Nursing homes industry who worked an average of 13.8 hours per
month (18.6 volunteers per 100 employees) (ABS, 2004), and 16,877 volunteers
working in the accommodation for the aged industry who worked an average of
17.6 hours per month (39.8 volunteers per 100 employees) (ABS, 2004).
ABS (2004) reported Census data from 2001 suggesting that 65,900 people were
employed in nursing homes and 18,000 in accommodation for the aged. In both
nursing homes and accommodation for the aged, the majority of employees were
females (89% and 86% respectively), most worked fewer than 35 hours per week (64%
and 63% respectively) and most were aged 45 years or more (52% and 56%). These
data cover main job only (not second job), and may be affected by the data collection
method (ie, self-reporting) and associated problems in recording whether employees
worked in aged care in hospitals (for example) (NILS, 2003). NILS (2003) concluded
that the estimates of total employment in aged care from the Census are less reliable
than estimates from other ABS surveys, but the Census data are more useful for the
finer detail.
NILS (2003) reported unpublished data from the Survey of Employment and Earnings,
August 2001, suggesting that there were 165,000 employees in the nursing homes and
accommodation for the aged industries. These data may be more reliable than census
data because collection is via a survey of employers. The private sector component of
the survey has been discontinued so updated data are not available.
The AIHW (2008: Table 16) reported data collected via surveys of nurses in each state
and territory that in 2005, there were 36,516 nurses whose main or second job was in a
RAC centre — 32,459 whose main job was in a RAC centre, and 4,057 whose second
job was in such a facility.
2.2.2
DATA AND METHODS
In the absence of a single data source, the size of the workforce allocated to the care of
people with dementia who live in RAC is derived here by multiplying:
the number of residents with dementia in 2008; and
the number of hours of care provided per resident with dementia.
The number of residents with dementia
The AIHW (2006) developed estimates of the numbers of people with dementia in RAC for
the year 2003 based on the ABS SDAC and allocated them across the eight Residential
Classification Scale (RCS) categories based on a mapping of questions from the RCS to
questions on the cared accommodation component of the SDAC. To estimate the number of
people with dementia in RAC facilities in 2008 for this report, the AIHW (2006) SDAC
percentages were applied to the Access Economics dementia population estimates for 2008.
Using this approach, there were around 90,000 people with dementia in RAC facilities in
2008 — 24,000 males and 64,700 females (Table 2–3). These estimates suggest around
40% of people with dementia are living in RAC facilities, which is broadly in line with
Doyle et al (2005) who estimated that, of the 200,000 people with dementia in Australia in
2005, approximately 87,000 (44%) were living in residential care.
24
Making choices: future dementia care
TABLE 2–3: NUMBER OF RESIDENTS OF RAC FACILITIES WITH DEMENTIA 2008
Prevalence
dementia 2008
RCS 1
RCS 2
RCS 3
RCS 4
RCS 5-8
Total
residents
Males
<65
65-74
75-84
7,410
18,240
35,870
207
801
2,929
70
623
2,283
199
372
1,388
83
392
65
536
1,163
542
2,415
8,155
85+
Total
Females
<65
65-74
75-84
85+
Total
Persons
<65
65-74
75-84
85+
Total
28,350
89,870
4,741
8,680
3,569
6,546
1,899
3,858
740
1,214
1,921
3,684
12,870
23,982
7,410
18,240
35,870
28,350
89,870
279
747
4,417
13,367
18,810
135
1,099
5,798
13,310
20,342
199
736
3,710
7,102
11,746
1,234
1,463
2,697
282
1,084
3,720
6,019
11,104
895
3,665
18,879
41,261
64,699
11,650
35,080
85,920
94,700
227,350
467
1,548
7,374
18,299
27,689
194
1,722
8,296
17,297
27,509
388
1,108
5,243
9,225
15,964
83
1,682
2,180
3,945
318
1,620
5,055
8,068
15,061
1,368
6,081
27,650
55,069
90,168
Source: Access Economics estimates for this report.
AIHW (2006) estimated that 48.7% of RAC residents had dementia. In June 2007, there
were 167,070 operational RAC places (not including flexible care places11 and ready to be
occupied by a resident), 94.5% of which were occupied (DoHA, 2007). In 2006-07,
1.175 million days of respite care were provided (DoHA 2007) — suggesting there were
around 3,218 respite places, further implying there were around 154,663 permanent
occupied places in June 2007. A further 6,841 residential care places (not all operational)
were allocated in 2007-08 (DoHA 2007). Assuming the same occupation rate, a provisional
estimate of the number of permanent operational places is around 161,500 in June 2008.
Hence, according to Access Economics estimates in Table 2–3, dementia residents
accounted for around 55% of RAC places in 2008. Given that Access Economics’ dementia
prevalence estimates are higher than those of the AIHW, it is not unexpected that the
corresponding estimate of the dementia residents as a proportion of RAC permanent
occupied places is also somewhat higher.
Staff hours per resident
Despite a number of caveats, staff hours per resident based on industry practice provides a
good basis for estimating the current workforce in RAC (Box 2-1). There is some debate
about whether the staff time or skills required for dementia-specific care in RAC facilities is
higher than average, reflecting for example, special training for staff to appropriately assist
residents with challenging behaviours or additional staff time required to care for residents
with dementia. The Hogan Review (Hogan, 2004) argued that it is difficult to identify what
additional funding is necessary to cover dementia care in high care facilities, because of the
progressive nature of the condition and comorbidities. The cost of caring for someone with
wandering or other challenging behaviours attributable to dementia in addition to the costs of
11
The Aged Care Act 1997 specifies five types of flexible care – Extended Aged Care at Home (EACH) and
Extended Aged Care at Home Dementia (EACH-Dementia) packages, Innovative Care, Multi-purpose Service
places and Transition Care places.
25
Making choices: future dementia care
caring for an older person with a range of disabilities stemming from various possible causes
is difficult to quantify. Further, the additional cost may vary depending on the current RCS
category of the resident (for example, the cost difference may be higher for a low resident
than a high care resident). Hogan (2004) suggested further work was required on the
funding needs for dementia residents, particularly in light of the paucity of research and
evaluation on dementia care services available at the time of the Hogan Review12.
In work for the Hogan Review (Hogan 2004), ACIL Tasman (2003a) found that in high care
facilities, the existence of a dementia unit was not a driver of labour costs, but that low care
facilities with dementia units had an average labour cost about $8 per resident day higher
than low care facilities with no dementia unit. As estimated by Access Economics (2003),
the cost of RAC per person with dementia ($36,547 in 2002) was higher than the Department
of Health and Ageing (DoHA) published estimate of $28,796 per person for all people in
residential care, with or without dementia. Notably, Extended Aged Care at Home Dementia
(EACH-D) packages are funded at the highest rate, equivalent to RCS1.13
12
Recommendation 20 of the Hogan Review was as follows: Research into neuro-degenerative diseases.
Attention should be given to research into neuro-degenerative diseases, with funding provided for:
a) comprehensive prevalence studies; and b) further data matching studies to enable a better understanding of
neurodegenerative disease pathways and the services accessed along pathways. The National Health and
Medical Research Council should continue to give priority to research into the prevention of dementia and
dementia related illnesses and to encourage multi-disciplinary research into the care of people with such
illnesses.
13
http://www.health.gov.au/internet/wcms/publishing.nsf/Content/ageing-commcare-eachd.htm-copy2
26
Making choices: future dementia care
Box 2-1 Staff hours per resident — points to note
The estimates here for the numbers of staff hours per resident are based on
industry practice. Current industry practice reflects current policy, quality of care
and productivity rather than population need. If there is unmet need, projected
workforce numbers may underestimated.
Further, industry practice does not necessarily reflect the benchmark for the
quality of care expected by society. Quality varies across providers and it is not
clear whether on average, the care provided reflects the standard that society
would prefer.
Moreover, industry practice with respect to staff hours is influenced by regulation.
For example, the Productivity Commission (1999) showed the link between the
regime for subsidy rates at that time and hours of care provided by qualified
nursing staff — with higher nursing home subsidies per day linked with higher
average hours of care per resident per week. Average qualified nursing hours per
resident per week varied from 10 to 14.1 (Productivity Commission 1999:57).
Quality of care requirements (for example, through government aged care
accreditation schemes) and employment regulations (including worker health and
safety) can also affect the hours of care provided.
Industry practice will vary over time depending on all of these factors (changes in
productivity, society’s expectations about the quality of care provided, and
regulation). Nevertheless, given the lack of data on quality and productivity,
industry practice provides a good basis for estimating the current RAC workforce
in RAC.
As an aside, the Aged Care Act 1997 has no quantitative workforce
specifications, but in (Section 41-3(a)(i)) the definition of residential care includes
‘appropriate staffing to meet the nursing and personal care needs of the person’.
In Section 54-1(b), the responsibilities of approved residential care providers
include that they are to ‘maintain an adequate number of appropriately skilled
staff to ensure that the care needs of care recipients are met’.
High care
For those with dementia in high care (RCS 1-4), staff hours are estimated to be the same as
the average for all high care residents. From provider financial data for high care facilities,
ACIL Tasman (2003a) estimated 3.35 hours were provided per resident per day (Table 2–4).
27
Making choices: future dementia care
TABLE 2–4: AVERAGE HOURS PER RESIDENT PER DAY — HIGH CARE
Average hours per
resident day
Director of Nursing
Care manager
Registered Nurse
Enrolled Nurse
Care worker
Therapy
Allied Health
Agency DON
Agency Care manager
Agency EN
Agency Care worker
Agency RN
Agency Allied Health
0.12
0.02
0.65
0.52
1.72
0.14
0.05
0.00
0.00
0.01
0.08
0.04
0.00
Proportion of
RACFs
93%
19%
94%
75%
92%
84%
36%
0%
0%
12%
33%
29%
2%
Source: ACIL Tasman (2003a:79).
The Australian Nursing Homes and Extended Care Association (ANHECA) submission to the
Productivity Commission (1999: submission 24) calculated the weekly hours per resident in
high care facilities based on average rostered hours from a representative sample as follows:
A Category 1 resident requires 27 care staff hours14 per week (3.86 hours per resident
per day);
A Category 2 resident requires 23 care staff hours (3.29 hours per resident per day);
A Category 3 resident requires 20 care staff hours (2.86 hours per resident per day);
and
A Category 4 resident requires 12 care staff hours (1.71 hours per resident per day).
Domestic and clerical hours represent 5 hours per week per resident regardless of
category (0.71 hours per resident per day).
The Bentleys MRI Chartered Accountants and James Underwood and Associates (2006)
National Residential Aged Care Survey collects data on staff hours per resident per day,
although the sample is not necessarily representative (aged care providers pay to
participate). A snapshot sample of the 2006 report15 showed that in 2005-06 on average
across high care places:
care hours per resident per day were 3.30;
support staff hours per resident per day were 0.95; and
total hours per resident per day were 4.24.
According to the Bentleys MRI (2006) survey, the private sector high care services have
11.7% less care staff hours per resident than voluntary/government services despite having
14
The submission specified ‘NPC hours’ but did not spell out the acronym, although it may stand for ‘nurse
practitioner candidate’ ie, registered nurses with extensive experience, knowledge and skills related to
gerontological nursing and the aged care sector.
15
http://www.bentleysbenchmarking.com.au/agedcaresurvey/BentleysMRI_samplereport_2006.pdf
28
Making choices: future dementia care
almost identical levels of average frailty. The private sector had 21.4% less support staff
hours per resident than the voluntary/government sector and also had less average
expenditure on contract catering, contract cleaning and laundry contractors. Government
owned facilities comprised 7.7% of all aged care places in June 2006 (Table 2–5). Notably,
differences across sectors in hours per resident reflect differences in employment
arrangements, productivity and quality of care — neither is necessarily closer to the
benchmark for best practice care as determined by social preferences.
TABLE 2–5: OWNERSHIP OF MAINSTREAM AGED CARE RESIDENTIAL PLACES, JUNE 2006 (A)
Sector
Proportion of total places (%)
Religious
Private for-profit
Community-based (b)
Charitable (c)
State and territory government
Local government
29.7
32.0
14.5
16.1
5.9
1.8
Total
100.0
(a) Based on status of the RAC service operator or provider. Excludes multi-purpose & flexibly funded services.
(b) Services to an identifiable community based on locality or ethnicity, not for financial gain.
(c) Services to the general community or an appreciable section of the public, not for financial gain.
Source: SCRGSP Report on Government Services 2007, based on DoHA (unpublished).
Low care
Based on provider financial data, ACIL Tasman (2003a) found that low care facilities with
dementia units appeared to require about 1.2 additional care labour hours per resident day
than facilities with no dementia unit and these additional hours are mainly made up by care
workers. ACIL Tasman estimated on average, 1.78 hours per resident per day were
provided in low care facilities (Table 2–6).
TABLE 2–6: AVERAGE HOURS PER RESIDENT PER DAY — LOW CARE
Average hours per
resident day
DON
Care manager
RN
EN
Care worker
Therapy
Allied Health
Agency DON
Agency Care manager
Agency EN
Agency Care worker
Agency RN
Agency Allied Health
0.07
0.05
0.12
0.14
1.27
0.11
0.01
0.00
0.00
0.00
0.01
0.00
0.00
Proportion of
RACFS
66%
38%
53%
46%
100%
83%
19%
1%
1%
5%
15%
5%
3%
DON is Director of Nursing. Source: ACIL Tasman (2003a:79).
29
Making choices: future dementia care
A snapshot sample of the Bentleys MRI (2006) National Residential Aged Care Survey
report16 showed that in 2005-06 on average across low care places:
care staff hours per resident per day were 1.71;
support staff hours per resident per day were 0.79; and
total hours per resident per day were 2.51. If the ACIL Tasman estimate for the
additional hours of care required for dementia residents is added, the Bentleys
estimate increases to 3.71 hours per resident per day.
Estimates from the different sources are in Table 2–7.
TABLE 2–7: ESTIMATES OF PAID STAFF HOURS PER RESIDENT PER DAY
ANHECA
Care+support
Cat 1
Cat 2
Cat 3
Cat 4
Low care
ACIL TASMAN
Care only
4.57 Low
4.00 Low dementia(a)
3.57 High
2.43
na
Bentleys MRI
Care+support
1.78 Low
2.98 Low dementia(a)
3.35 High
2.51
3.71
4.24
(a) Low dementia care hours for ACIL Tasman (2003a) and Bentleys MRI are calculated by adding 1.2 additional
care hours as indicated by ACIL Tasman analysis of provider data. Adding 1.2 to the average slightly overstates
the hours for dementia care because the average includes both dementia and no dementia facilities.
Sources: AIHW (2006) Dementia in Australia, ANHECA submission number 24 to the Productivity Inquiry into
Nursing home subsidies, Bentleys MRI 2006 National aged care survey, ACIL Tasman (2003a).
Total hours of care provided to residents with dementia in Table 2–8 were calculated by
multiplying estimates of residents in Table 2–3 by estimates of care hours in Table 2–7.
Formal care hours in RAC facilities in 2008 ranged from 131 million using the ANHECA
estimates for high care hours and 137 million based on the Bentleys MRI estimates for high
care hours.
TABLE 2–8: PAID STAFF HOURS PER DAY AND HOURS PER YEAR, RAC, 2008
No. people with
2008
dementia in RAC
High care
RCS1
27,689
RCS2
27,509
RCS3
15,964
RCS4
3,945
Total high care
Low care
RCS5-8
15,061
Total low and high care(a)
Total hours per day
ANHECA
Bentleys MRI
Total hours per year
ANHECA
Bentleys MRI
126,577
110,037
57,014
9,581
303,209
117,400
116,639
67,687
16,728
318,454
46,232,150
40,190,969
20,824,300
3,499,559
110,746,978
42,880,319
42,602,427
24,722,609
6,109,818
116,315,173
na
55,875
na
20,408,293
359,084
374,328
131,155,271
136,723,466
(a) ANHECA estimate for total hours per year based on addition of Bentleys MRI estimate for low care.
Sources: AIHW (2006), ANHECA submission number 24 to the Productivity Inquiry into Nursing home subsidies,
Bentleys MRI (2006) National aged care survey, ACIL Tasman (2003a).
16
http://www.bentleysbenchmarking.com.au/agedcaresurvey/BentleysMRI_samplereport_2006.pdf
30
Making choices: future dementia care
Volunteers
The ABS (2004) estimates from above are adjusted upward here to include volunteers
working in the government sector to calculate total hours provided by volunteers in the year
1999-2000. While the number of volunteer hours provided in Australia increased between
2000 and 2006 (ABS, 2007), the rate of growth in total hours provided per annum was less
than the rate of growth per annum of the population. It is reasonable therefore to assume
that volunteer hours in RAC remained the same between 1999-2000 and 2007-08. Applying
the proportion of RAC residents who have dementia from above (55%), a reasonable
estimate of around 3.7 million volunteer hours were allocated to dementia residents in RAC
facilities in 2007-08 (Table 2–9). This is equivalent to 2,174 full time equivalent (FTE)
volunteers (using FTE conversion of 1,717.6 hours per annum ie, 38 hours for 45.2 weeks).
TABLE 2–9: VOLUNTEER HOURS PER YEAR, RAC
Accomm for aged
Nursing homes
Total
No.
volunteers
(private
sector)
16,877
15,751
32,628
Hours per
volunteer
per month
17.6
13.8
31.4
Total hours Total hours
per year
per year
(private
private and
sector)
govt
3,564,422
3,861,779
2,608,366
2,825,965
6,172,788
6,687,744
Hours for
FTE
dementia
volunteers
2,156,027
1,255
1,577,733
919
3,733,760
2,174
Sources: Access Economics estimates based on ABS (2004); DoHA (2007).
2.2.3
NUMBER OF RAC DEMENTIA WORKERS
Converting data on the number of residents (Table 2–3) and hours of care (Table 2–8) into
workforce estimates is not a simple matter of straight multiplication because of the need to
account for annual leave, maternity leave, sick leave or long service leave. Work
arrangements in RAC are covered by a large number of awards, agreements and other types
of legislation applying in different jurisdictions, relating to government and non-government
organisations, various occupational groups and different types of contracts (eg. permanent
full time or part time, agency or casual).
According to ACIL Tasman (2003a:17), 64% of direct care staff were permanent part time
workers, 14% were full time, 15% were casual and 7% were agency staff. As noted earlier,
these staff accounted for around 74% of RAC staff in 2003. Based on ACIL Tasman (2003a)
and checking a selection of more recently updated nursing in RAC awards, the calculations
of staff numbers are based on the following work arrangements for all staff (direct care and
others).
Ordinary time of 38 hours per week.1718
A conservative estimate of annual leave at four weeks per annum. Annual leave
provisions vary, with some awards providing for four weeks annual leave and some
17
While based on ACIL Tasman (2003a), this continues to be the standard for ordinary hours, eg. The Nurses
Aged Care Award — State 2005 covering nursing employees in the private sector (non-governmental) employed
in aged care in Queensland states that ordinary hours of work shall be an average of 38 hours per week.
18
The ABS defines full time workers are those who usually worked 35 hours or more per week (in all jobs)
(6202.0 Labour force survey).
31
Making choices: future dementia care
providing for five or six weeks. Moreover, additional annual leave (one or two weeks)
is often provided for those working shifts and weekends.
Sick leave at 10 days per annum. Personal leave often encompasses sick,
bereavement and carers leave with entitlements varying considerably.
Long service leave at two months after 10 years. Long service leave provisions also
vary widely. ACIL Tasman (2003a) found that, for nursing, three of the awards have
two months of long service leave after ten years, two provide three months leave
after ten years, three provide three months after 15 years and one provided six
months after 15 years.
Parental leave of 52 weeks (unpaid) is standard (ACIL Tasman 2003a). However,
since the average age of nurses in RAC was 50 years in 2005 (AIHW, 2008), parental
leave is not included in the calculations here (again leading to conservative estimates).
Study leave and rostered days off are also often provided for but are not included here.
Casuals are often paid at a higher rate than permanent staff in lieu of leave, although
those working regularly for long periods may be entitled to long service and parental
leave. It is assumed the casual staff have the same work arrangements as other staff.
To account for these work arrangements, the number of weeks worked per year is adjusted
as follows: 52 – 4 – 2 – 0.8 = 45.2 weeks worked per year. Hence, there are an estimated
76,000 to 80,000 FTE staff required to look after people with dementia in RAC in 2008
(Table 2–10) based on industry practice with respect to care hours provided to dementia
residents. Note these estimates are only for paid workers and recall an estimate of the
number of volunteer hours is in Table 2–9.
The estimates in Table 2–10 are in line with estimates from the literature outlined
earlier, remembering that previous estimates were for total staff, whereas these reflect
only staff caring for dementia residents of RAC facilities. Further, comparisons with the
estimates above need to be made on the basis of FTEs, not simply total numbers of
staff.
The number of staff required depends on the staff skill mix, productivity and quality of
care.
TABLE 2–10: NUMBER OF FTE PAID STAFF CARING FOR RAC DEMENTIA RESIDENTS, 2008(A)
Number FTE staff
ANHECA
Bentleys MRI
High care
RCS1
RCS2
RCS3
RCS4
Total high care
Low care
RCS5-8
Total low and high
care
26,917
23,399
12,124
2,037
64,478
0
na
24,965
24,803
14,394
3,557
67,720
0
11,882
76,360
79,601
(a) Adjusted for recreation leave, sick leave and long service leave based on ACIL Tasman (2003a).
Source: Access Economics calculated based on Table 2–3 and Table 2–8.
32
Making choices: future dementia care
2.2.4
VALUE OF RAC FOR PEOPLE WITH DEMENTIA
The value of RAC care for people with dementia is based on total expenditure, not just
expenditure on the labour force. Care cannot be provided without the accommodation and
other costs of domestic chores etc.
Access Economics (2003) estimated that the cost of caring for people with dementia in
nursing homes and hostels (the old term for high and low care residential facilities) was
$2,847.1 million in 2002. This represented 66% of total Commonwealth residential care
subsidies in FY2002-03, estimated to be $4.3 billion. Nursing homes and hostels also
represented 88% of the total direct health system costs of dementia calculated by Access
Economics (2003).
AIHW (2006) estimated that total RAC expenditure attributable to dementia in 2003 was
$993 million (of total residential care expenditure of $4.17 billion) — based on a new
methodology. A previous estimate based on dementia as the main condition was $1.598
billion in 2003 (of the same total residential care expenditure of $4,171 million). The previous
‘old’ method estimated the cost of dementia as the total costs of care for residents with
dementia as the main condition. The $993 million estimate is based on a new method which
takes account of comorbidities (the ‘multiple conditions’ method). Total expenditure has
been reallocated on the basis that people in RAC have a number of diseases or disabilities
(dementia and diabetes for example). People with dementia also require assistance
because of hearing loss (for example) and so a portion of the care for that person is for the
comorbidity (hearing loss) rather than the dementia itself (AIHW, 2006).
TABLE 2–11: BASIC FUNDING BY CONDITION GROUPS AND MODELLED RCS CLASSIFICATION ($M)
Source: AIHW (2006:Table 8.7).
Even if the ‘multiple conditions’ method was used here, the estimate of the cost of RAC for
people with dementia would be higher for two reasons:
the prevalence estimates are higher (for the reasons explained above); and
the ‘multiple conditions’ method only includes the costs of RAC facilities covered by
government subsidy (ie, residents’ contributions are excluded).
Top down estimates of the value of RAC rely on firm estimates of total expenditure on
RAC in 2007-08 including government and non-government contributions, recurrent and
capital expenditure.
In 2007-08, Australian Government expenditure on RAC was around $6.26 billion
(including $5.32 billion through DoHA, and $936 million through the Veteran’s Affairs
portfolio).19
Experimental estimates of state and territory government expenditure on RAC were
$148.1 million in 2006-07 (Steering Committee for the Review of Government Service
Provision (SCRGSP) 2008:Table 13A.68).
In addition, ‘experimental’ capital
contributions from Australian, state and territory governments were around $197.9
19
Australian Government Budget, Health and ageing portfolio, Outcome 4 Aged Care and Population Ageing,
2007-08 and Veterans’ Affairs portfolio, Table 2.5, 2007-08.
33
Making choices: future dementia care
million in 2006-07 (SCRGSP 2008:Table13.3). These data are likely to be affected by
differences in definitions and scope across different jurisdictions, so historical estimates
cannot be used as the basis for measuring growth in expenditure over time. Inflating at
the rate of growth in health expenditure to capture relatively fast growth in health wage
inflation, provides an estimate for these components of expenditure in 2007-08 of $0.36
billion.
Resident contributions are not included in these estimates and it is not clear whether
Australian Government capital funding is incorporated in its entirety, however:
Using the figure for the proportion of residential places occupied by people with
dementia (55%) suggests a lower bound estimate for the value of RAC care for people
with dementia of $3.64 billion.
Alternatively, given that 83% of residents with dementia are in high care which is
relatively more expensive, based on the Access Economics (2003) estimate of 66%,
the value of RAC care for people with dementia is $4.37 billion.
Bottom up estimates of the value of RAC rely on comprehensive estimates of unit costs.
Applying the average Australian Government recurrent expenditure per recipient in Table 2–
12 to the estimates in Table 2–3, expenditure on dementia residents in RAC facilities would
be $3.7 billion in 2008. Clearly this is an underestimate as state and territory government
and resident contributions, and capital funding are excluded. More recent estimates of
expenditure on people in RAC with dementia are likely to be higher with the introduction in
March 2008 of the new Aged Care Funding Instrument (ACFI) (Access Economics 2008)
(Box 2-2).
Box 2-2 The new Aged Care Funding Instrument
More recent estimates of expenditure on people in RAC with dementia may be
higher with the introduction in March 2008 of the new Aged Care Funding
Instrument (ACFI).
Access Economics looked briefly at the implications of the results of the first
33,000 ACFI appraisals (including reappraisals of existing residents and
appraisals of new residents) for subsidy payments (Access Economics 2008).
The average subsidy payment for reappraisals is significantly higher under ACFI
subsidy rates than under the RCS rates, based on their last RCS level ($95.61
versus $86.86) reflecting both increased dependency and ‘unexpectedly’ higher
ACFI appraisals.
Source: Access Economics (2008)
Hogan (2004:134) estimated unit costs in 2002–03 were $54,120 for each residential care
high care recipient and $27,313 for each residential care low care recipient — including
labour, capital and materials. Projections were prepared for the Hogan Review on the basis
that costs in the aged care sector can be expected to rise a little faster than the CPI, owing to
its reliance on labour and capital inputs where relative costs may rise over time, such as
nurse wage costs, land costs and the cost of improved technology (Hogan 2004:134). For
this project, conservatively assuming that the annual growth in unit costs is 2.5%, the inflated
Hogan (2004) estimates for 2007-08 are $61,232 for high care and $30,902 for low care.
The resulting estimates of the value of RAC dementia care are in Table 2–12.
34
Making choices: future dementia care
TABLE 2–12: AVERAGE AUSTRALIAN GOVERNMENT PAYMENTS (SUBSIDY PLUS SUPPLEMENTS)
FOR EACH RAC RECIPIENT
Increase 2006-07
to 2007-08(a)
2006-07
High care
45,200
2.60%
Low care
16,200
3.30%
(a) Assumed the same as for 2005-06 to 2006-07
2007-08
(estimated)
46,375
16,735
Source: DoHA (2007:Table 16).
Overall, the value of RAC for people with dementia in 2007-08 is between a lower
bound of $3.64 billion and an upper bound of $5.1 billion.
TABLE 2–13: AVERAGE AUSTRALIAN GOVERNMENT PAYMENTS (SUBSIDY PLUS SUPPLEMENTS)
FOR EACH RAC RECIPIENT
RCS 1
RCS 2
RCS 3
RCS 4
RCS 5-8
Total
467
1,548
7,374
18,299
27,689
194
1,722
8,296
17,297
27,509
388
1,108
5,243
9,225
15,964
0
83
1,682
2,180
3,945
318
1,620
5,055
8,068
15,061
1,368
6,081
27,650
55,069
90,168
21,678
71,799
341,951
848,640
1,284,067
9,005
79,869
384,721
802,151
1,275,746
18,009
51,367
243,147
427,805
740,328
0
3,843
78,020
101,098
182,961
5,319
27,111
84,593
135,010
248,541
54,010
233,989
1,132,432
2,314,703
3,731,642
28,622
94,800
451,498
1,120,507
1,695,427
11,889
105,456
507,969
1,059,125
1,684,439
23,778
67,823
321,040
564,855
977,497
0
5,074
103,014
133,485
241,573
9,822
50,063
156,210
249,311
465,405
74,112
323,215
1,539,732
3,127,283
5,064,342
Persons
<65
65-74
75-84
85+
Total
Dollars millions
DOHA (2007)
<65
65-74
75-84
85+
Total
Hogan (2004)
<65
65-74
75-84
85+
Total
Source: Access Economics calculations based on DoHA (2007, Table 16), and estimates of the number of
residents with dementia in Table 2–3.
2.3
COMMUNITY CARE WORKERS
2.3.1
DATA AND METHODS
The vast majority of community care workers are ‘aged or disabled person carers (home
support workers)’ who provide ‘general household assistance, emotional support, care and
companionship for aged and disabled in their homes’.20 In 2001, the Census suggested
there were 51,792 people working as aged and disabled carers, 70.0% part-time (AIHW,
2003) and 77,412 in 2006 (AIHW, 2009). For this project, workforce estimates are reported
for the care of those with dementia provided by four government programs: Home and
20
This terminology is drawn from the Australian Standard Classification of Occupations used by the ABS.
35
Making choices: future dementia care
Community Care (HACC), Community Aged Care Packages (CACP), Extended Aged Care
at Home (EACH) and EACH-Dementia (EACH-D). Other programs out of scope here are
listed in Box 2-3.
HACC
HACC is the largest program providing assistance for older people in the community (AIHW,
2007c). Services are provided to people in their own home including transport, nursing,
home maintenance, counselling and personal care. HACC is jointly funded by the Australian,
state and territory governments, with outlays of $1.52 billion in 2006-07. The Australian
Government contributed 61% (SCRGSP, 2008:Table 13A.45). In addition, in 2006-07, NSW,
Victoria, SA, Tasmania and the NT reported additional funding (over and above that
incorporated in the $1.52 billion) of $118.8 million (other states were unable to supply
estimates) (SCRGSP, 2008:Table 13.4).
Some HACC services are provided to younger people with a disability, so not all HACC
services are provided to the aged. In 2006-07, 11.5% of clients were aged less than 50
years, 19.7% were aged between 50 and 69 years and 68.8% were aged 70 or more
(SCRGSP 2008, Table 13A.33). In 2006-07, around 777,470 people received HACC
services (DoHA 2007).
Few estimates of the HACC workforce are available. According to a survey of paid HACC
workers commissioned by OFTA SA (2006), there were around 1,856 FTE paid HACC
workers in SA in 2006, 89% female and 37.5% worked full time. In addition, 2,377
volunteers were identified — not including Meals on Wheels, which employs the largest
volunteer workforce of any HACC funded service (OFTA SA, 2006).
CACP
The CACP program targets older people living in the community with care needs equivalent
to at least low level RAC. A range of in-home support services are provided, such as
personal care, domestic assistance and social support, transport to appointments, food
services and gardening. An ACAT approval is required before services can be obtained.
EACH and EACH-D
EACH targets older people living at home with care needs equivalent to high level RAC.
ACAT approval is required to receive services. In addition to the services offered by CACP,
an EACH client may be able to receive nursing care, allied health care and rehabilitation
services. EACH-D packages provide the same full range of services that ‘general purpose’
EACH packages provide. However, EACH-D packages offer service approaches and
strategies to meet the specific needs of care recipients with dementia who experience
behaviours of concern.21
21
The EACH-D Program was announced in the 2005 Federal Budget following research showing that entry to
RAC for people with dementia may be prevented if appropriate community support is available. For example,
LoGiudice et al (1995) concluded that there was a deficit in adequate service provision for people with dementia
living at home, such that residential care becomes the only viable care option.
36
Making choices: future dementia care
Box 2-3 Care for people with dementia not in scope in this report
The dementia carers workforce also includes those involved in the following
programs (out of scope in this report):
●
GPs and practice nurses.
●
Allied health workers (physiotherapists, podiatrists etc).
●
Hospital care.
●
Innovative Care (Australian Government) — developing and testing of
flexible models of service delivery in areas where mainstream aged care services
may not appropriately meet the needs of a location or target group (DoHA 2007).
●
Multi-purpose Service program (Australian Government) supports
improvement in the integration and provision of health and aged care services for
small rural and remote communities ($69.2 million in 2006-07 (DoHA 2007)).
●
Transition Care Program (jointly funded by the Australian, state and
territory governments) delivers services in the form of short-term therapy and
support to older people following a stay in hospital. 1,594 of 2,000 places were
operational in June 2007. During 2006-07, 6,511 people received care under the
Transition Care Program (DoHA 2007).
●
The Aged Care Assessment Program (ACAP) — the Australian
Government provides grants to state and territory governments to operate 114
ACATs with funding of $65.4 million in 2006-07 (DoHA 2007).
●
Veterans’ Home Care (VHC) and Community Nursing targeting veterans
and war widows/widowers with low care needs. In 2006-07, there were around
80,000 veterans approved for VHC services costing around $94.9 million
(SCRGSP 2008: table 13A.47).
●
Dementia Behaviour Management Advisory Services helping staff of
residential and community services, and carers of people with dementia
exhibiting challenging behaviour (DoHA 2007). The aim of these services is to
build on currently provided psychogeriatric care services.
●
The National Dementia Support Program (NDSP), funded by DoHA and
delivered by Alzheimer’s Australia to provide information, education and training.
The NDSP includes the National Dementia Helpline, Dementia and Memory
Centres, Early intervention support programs, Non-clinical advice, counselling
and professional support, Education and training programs, Awareness raising
and information activities, Support for special needs groups. More than 50,000
people used these services during 2006-07 (DoHA 2007).
●
National Aboriginal and Torres Strait Islander Flexible Age Care Program
providing culturally appropriate aged care, close to where older Indigenous
people live, and mainly in rural and remote areas (around 750 places by 2006-07,
(DoHA 2007)).
●
National Respite for Carers Program ($167 million in 2006-07 (DoHA
2007).
●
Community care programs for older people that operate at a state,
territory or local council level, for example, Cognitive Dementia and Memory
Services Clinics (CDAMS) in Victoria.
37
Making choices: future dementia care
NUMBER OF COMMUNITY CARE DEMENTIA WORKERS
2.3.2
In the absence of a single data source, the size of the workforce providing formal care to
people with dementia who live in the community is derived here as the product of:
the number of clients with dementia in 2008; and
the number of hours of care provided per person with dementia.
As noted in Box 2-1, deriving estimates of staffing requirements based on current practice
may bias projections where current practice does not reflect population need. If there is
unmet need for care, projected workforce numbers may be underestimated.
2.3.2.1
THE
NUMBER OF COMMUNITY CARE PLACES ALLOCATED TO PEOPLE WITH
DEMENTIA
HACC
There are no formal data on the number of HACC recipients with dementia.22 The literature
suggests the following:
a HACC dependency pilot survey of almost 1,000 clients conducted in Victoria in 2002
revealed that 5.2% were reported to have dementia (<1% of clients aged less than 65;
4% of clients aged 65-74 years; and 10% of clients aged 85 or more) (Victorian
Government Department of Human Services, 2006). Were this proportion to apply to
the national HACC client population, there would have been around 35,400 HACC
clients with dementia in 2003–04.
The AIHW (2006) noted an analysis of 14,000 community care clients over 60 years of
age, by Silver Cross WA, who reported about 3% had a diagnosis of dementia, 5%
showed functional pointers of cognitive loss and another 2% had ‘behaviour
problems/memory loss/confusion’ recorded on their notes. Based on this study, the
AIHW (2006) suggested 5% of clients had dementia (3% with diagnosis and half of
those with cognitive loss).
In 2006-07, 777,470 people received HACC services (DoHA, 2007). Between June 2007
and June 2008, the Australian population aged 70 or over grew by 2.4%. Assuming HACC
clients grew at the same rate, there would be 796,182 HACC clients in 2007-08.
Applying the Victorian Government Department of Human Services (2004)
estimate of 5.2% to this figure, around 41,400 HACC clients had dementia in
2008.
CACP, EACH and EACH-D
Notably, community care packages are used as a proxy for client numbers. Direct use of the
number of clients would be preferable as service hours are published on a per client basis
(rather than per package). However, up-to-date data on clients are not always available, in
part because operationalising packages and allocating them to clients takes time.
22
The HACC minimum data set does not currently include information on dementia diagnosis.
38
Making choices: future dementia care
There were around 45,901 community care places in December 2007 (DoHA, 2007). The
calculations used to estimate how many of these were allocated to people with dementia are
summarised in Table 2–14.
A low estimate (10,524) was calculated based on the following (Table 2–14):
For CACP, dementia status depends on formal diagnosis by the ACAT or a medical
practitioner. In 2002 there were 4,600 CACP clients with dementia out of around
25,000 CACP clients in all. Hence, around almost one in five (18.4%) CACP clients
was reported as having been diagnosed with dementia (AIHW, 2006).
In 2002, EACH clients with dementia accounted for 32% of both clients and hours of
service provided (AIHW, 2006), although the total number of packages was small
(around 280). Among older recipients, there were almost equal numbers of clients with
and without dementia.
Alternatively, a high estimate of 13,634 was calculated based on the Victorian Aged Care
Assessment Minimum Data Set (Lincoln Centre for Ageing and Community Care Research,
2006) and AIHW (2007a) (Table 2–14). In 2004-05:
27.7% of Indigenous people age 50 or more or non-Indigenous people aged 70 or
more, who were assessed had dementia; and
17.6% of Indigenous people aged less than 50 years and non-Indigenous people aged
less than 70 years who were assessed had dementia.
In addition, in June 2006:
88.6% of CACP recipients were aged 70 or over and 3.8% of CACP recipients were
Indigenous — the vast majority of whom were aged 50 or more (95% in Victoria and
99% Australia-wide) (AIHW, 2007a); and
83.7% of EACH recipients were aged 70 or over, 1.1% were Indigenous (the vast
majority of whom were aged 50 or over — 96%) (AIHW, 2007a).
The low estimate is preferred (10,659 for all CACP, EACH and EACH-D
placements with dementia), since it is closer to other estimates available
(ie, AIHW) and the high estimate may include some duplication of packages
between programs.
TABLE 2–14: ALLOCATED COMMUNITY CARE PLACES, DECEMBER 2007
CACP
EACH
EACH-D
Allocated places
39,627
4,274
2,000
AIHW (2006)
with dementia
18.4%
32.0%
100.0%
27.7%x88.6%
27.7%x83.7%
100.0%
17.6%x11.4%
17.6%x16.%
100.0%
LCACCR (2006)
with dementia
aged 70+
with dementia
aged <70
Total
places
Total for
those with
dementia
45,901
10,659
13,634
Source: Access Economics estimates based on DoHA (2007), AIHW (2006), and Lincoln Centre for Ageing and
Community Care Research (2006).
39
Making choices: future dementia care
2.3.2.2
THE NUMBER OF HOURS OF CARE PROVIDED PER RECIPIENT
HACC
Information on the use of HACC services by people with dementia is not currently available
(AIHW, 2006). Clients with dementia may either receive more hours/services than average,
or progress to programs offering higher levels of care (CACP or EACH). HACC
hours/services provided per client from 2004-05 (AIHW, 2007b) are in Table 2–15. Applying
the average HACC hours/services per client for 2004-05 for those aged 65+ to the number of
clients with dementia in 2008 results in the estimates in the final column of Table 2–15.
Notably, while more than 1.6 million hours of service were provided to clients, a large number
of other services were also delivered including meals, linen, transport, and aids and
modifications (including home modifications). These last are not measured in hours. An
adjustment to the workforce estimates for these services is discussed below.
TABLE 2–15: HACC HOURS AND SERVICES (A)
65-74
75-84
85+
65+
Hours/services for
people with
dementia 2007-08
Clients 2004-05
143,400
265,700
149,600
561,800
41,399
Hours of assistance 200405 (‘000)
5,191.4
10,159.9
6,512.2
21,924.0
36.2
38.2
43.5
39.0
1,511.8
4,732.5
4,270.6
10,548.3
meals per client
10.5
17.8
28.5
18.8
Linen deliveries (‘000)
3.8
8.1
6.2
18.2
0.0
0.0
0.0
0.0
720.6
1,637.2
985.8
3,359.1
transport per client
5.0
6.2
6.6
6.0
Home modification ($‘000)
1,381.3
2,394.6
1,020.9
4,801.7
hours per client
Meals (‘000)
deliveries per client
Transport (‘000)
modifications per client
Aids/modifications (‘000)
aids per client
9.6
9.0
6.8
8.5
44.4
73.0
40.6
158.2
0.3
0.3
0.3
0.3
1,615,567
777,298
1,341
247,530
353,835
11,658
(a) Home maintenance is a general repair and care of a client’s house or yard (eg: changing light bulbs, fixing
door locks). Home modification includes installation of safety aids like alarms, ramps and support rails in the
home.
Source: Access Economics calculations based on AIHW (2007b)
CACP
In terms of total hours of service per week, excluding ancillary services not recorded in time
based units, CACP clients with dementia received a median of 6.0 hours in the census week
(2002) (mean 6.9 hours), which was half an hour more on average than the median of 5.5
hours for clients without dementia (mean 5.9 hours) (AIHW 2006:171). Weekly hours of
service and the number of services per client based on data for those with dementia,
together with an estimate of total hours/services provided to those with dementia in 2008 are
in Table 2–16. Nearly five million hours of service were provided to CACP dementia clients
in 2008. In addition, 1.9 million meals were delivered, 757,000 linen deliveries were made
and there were a similar number of transport trips. These last are not measured in hours.
An adjustment to the workforce estimates for these services is discussed below.
40
Making choices: future dementia care
TABLE 2–16: CACP HOURS/SERVICES FOR DEMENTIA CLIENTS, 2008
weekly
median
Hours/services
for people with
dementia
Personal care
2.0
757,345
domestic assistance
2.0
757,345
social support
2.0
757,345
other food services
1.5
568,009
respite care
3.0
1,136,018
rehabilitation
1.0
378,673
home maintenance
0.8
302,938
case management
0.8
302,938
delivered meals
5.0
1,893,364
linen deliveries
2.0
757,345
transport trips
2.0
757,345
Hours
Number services
Source: Access Economics calculations based on AIHW (2006).
EACH
When the number of hours of service provided is added over all EACH service types, clients
with dementia received a median of 17.9 hours of EACH services in the week (mean of 17.6
hours) — half an hour less than the median number of hours of assistance in the week for
clients without dementia (median of 18.4 and mean of 17.8). This reflects that all EACH
clients have high care needs (AIHW, 2006). Weekly hours of service and the number of
services per client based on data for those with dementia, together with an estimate of total
hours/services provided to those with dementia in 2008 are in Table 2–17. Over 1.8 million
hours of service were provided to EACH-D clients in 2008, together with 349,000 meals,
69,800 deliveries of linen and 279,200 transport trips. These last are not measured in hours.
An adjustment to the workforce estimates for these services is discussed below.
41
Making choices: future dementia care
TABLE 2–17: EACH HOURS/SERVICES FOR DEMENTIA CLIENTS, 2008
Hours
Personal care
domestic assistance
social support
other food services
respite care
rehabilitation
home maintenance
case management
Allied health
Nursing
Number services
delivered meals
linen deliveries
transport trips
weekly
median
Hours/services
for people with
dementia
9.0
2.0
2.0
2.5
4.0
1.8
1.3
1.5
0.8
1.0
628,198
139,600
139,600
174,500
279,199
125,640
90,740
104,700
55,840
69,800
5.0
1.0
4.0
348,999
69,800
279,199
Source: Access Economics calculations based on AIHW (2006)
EACH-D
There are no publicly available consolidated data on EACH-D hours or services provided to
date. Estimates of hours of service for this report were based on provisional estimates from
extrapolating partial data on packages rolled out to date. In 2008, a mean of 1.6 million hours
of service is estimated to be provided, together with around 14,000 allied health visits, and
other assorted services (meals, linen deliveries and transport services). Note that allied
health workers and GPs are not in scope for the staffing estimates in this report (Box 2-3).
Adjustment to CACP and EACH to account for fixed costs and ongoing case
management time
CACP, EACH and EACH-D parcel together multiple types of assistance according to
individual needs. Case management is therefore important, especially for clients with
dementia who can require a higher than average case management load (AIHW 2006:176).
CACP and EACH service use data do not include comprehensive measures of upfront case
management time. For the purposes of this analysis, it is assumed that six hours are spent
on case management (including travel time) per client before the commencement of service
provision. The length of stay is estimated as 1-2 years (average 1.5) for CACP, 3-6 months
(average 4.5) for EACH and 6 months for EACH-D. Fixed cost case management time is an
additional:
4 hours for each CACP dementia client per year (29,166 hours total per year);
16 hours per year for EACH clients with dementia (21,883 hours total per year); and
12 hours for EACH-D clients (24,000 total per year).
42
Making choices: future dementia care
Adjustment to HACC, CACP and EACH to account for linen, meals and transport not
otherwise measured in hours
There are no specific measures of the time involved in the provision of linen or meals to the
homes, or on transportation of people with dementia receiving HACC, CACP, EACH or
EACH-D assistance. Meals and transport services are often provided by volunteers, and
aspects of service provision arrangements can vary considerably across service
organisations, for example, ratios of paid staff to unpaid volunteers, reimbursement of
volunteers, and provision of capital (such as vehicles) for provision of services. Linen
provision, on the other hand, is most often a commercial exercise. Broader information
about linen is very limited. Estimates of staffing for each of these services are as follows.
Information derived from websites for Meals on Wheels suggests a reasonable
estimate of 35 minutes of staff time (including volunteers) per meal (prepared and
delivered) (Table 2–18).
3
In Queensland,23 2.4 million meals are delivered each year to an average of
10,000 clients per day, with 300 paid staff (such as co-ordinators, supervisors,
managers, cooks/chefs) and 15,000 volunteers. Hours per week for paid staff
were not available, but volunteers typically work a few hours a fortnight (rostered
on lunchtime delivery shifts for example).
3
In NSW,24 4.5 million meals are delivered annually to 20,000 clients per day by
35,000 volunteers. Volunteers typically have a regular day in the week which they
deliver meals, (but this is more often a particular day per month volunteering).
There are 240 services in NSW, and most employ a coordinator to manage the
service on a daily basis and to be responsible for service development.
3
3
In SA25 5000 meals are delivered each week, with three paid staff and 10,000
volunteers. Paid staff work 38 hours per week, volunteers on average two to
three hours a fortnight (kitchen volunteers usually four hours a shift and
drivers/deliverers two hours).
Australia-wide, over the course of a year, 14 million meals are delivered by more
than 100,000 volunteers (and hundreds of paid staff) to about 60,000 recipients.
On average, there are 53,000 clients per day. According to the NSW Meals on
Wheels Association, voluntary delivery of meals contributes the equivalent of
$200 million funding nationally.26
For transport trips, staff time per trip is estimated at 1.3 hours, based on data from the
Mitcham Council in South Australia which reported that 2006-07, the community bus
service (involving 14 accredited volunteer drivers and 17 helpers), provided 26,689
trips totalling 35,812 hours of service. While this is a very limited sample on which to
base the estimate, it was the only information available.
No data were available on staff time per wash and delivery for formal linen deliveries.
However, since the unit cost of linen deliveries in 2008-09 in SA was similar to that of
meals on wheels (an average of $7.50 — see Section 2.3.3 below), the same staff time
is used — 35 minutes per service (the same as meals on wheels).
23
www.qmow.org
24
www.nswmealsonwheels.org.au
25
http://www.mealsonwheelssa.org.au/
26
www.nswmealsonwheels.org.au
43
Making choices: future dementia care
TABLE 2–18: MEALS ON WHEELS, ESTIMATES OF STAFF, HOURS AND MEALS DELIVERED
South Australia
QLD
NSW
Average
No. meals
per week
25,000
46,154
86,538
Paid
No. paid hours per
staff
week
3
38
300
38
240
38
No.
volunteers
10,000
15,000
35,000
Volunteer
Total
hours per hours per Hours per
week
week
meal
1.3
12,614
0.50
1.3
30,150
0.65
1.3
52,870
0.61
0.59
Source: Relevant state Meals on Wheels websites.
2.3.2.3
COMMUNITY CARE DEMENTIA WORKFORCE
Table 2–19 presents estimates of FTE staff for 2008 only for those services measured in
hours. The same adjustment was made as for the RAC dementia workforce — a 38 hour
week and an average of 45.2 weeks worked per year (adjusting for recreation leave, sick
leave, and long service leave). The number of meals, linen deliveries and transport trips are
simply listed in that table. Estimates of FTE staff including these last three services are
presented separately (reflecting the limited information on which these estimates are based),
based on the adjustments discussed above, in Table 2–20.
If meals, linen deliveries and transport trips are excluded, around 5,860 FTE staff are
required for provision of HACC, CACP, EACH and EACH-D in 2008.
Including meals, linen deliveries and transport trips, around 8,550 FTE staff are
required (including volunteers).
Remember that some programs (such as the ACAP, VHC and the NDSP) are not included in
these estimates (see Box 2-3).
TABLE 2–19: COMMUNITY CARE FTE STAFF — FOR SERVICES MEASURED IN HOURS ONLY —
2008(A)
HACC
CACP
EACH
EACH D
Total
Packages/
clients
41,399
7,291
1,368
2,000
52,058
Hours
1,615,567
4,996,045
1,863,874
1,580,362
10,055,849
FTE staff
941
2,909
1,085
920
5,855
No. Meals
777,298
1,895,756
355,597
44,651
3,073,302
No. Linen
deliveries
1,341
758,302
71,119
7,628
838,391
No. Transport
trips
247,530
758,302
284,477
440,200
1,730,510
(a) FTE based on 38 hours per week, adjusted for recreation leave, sick leave and long service leave.
Source: Access Economics calculations.
TABLE 2–20: COMMUNITY CARE FTE STAFF (INCLUDING VOLUNTEERS) 2008(A)
HACC
CACP
EACH
EACH D
Total
Services
measured in
hours
1,615,567
4,996,045
1,863,874
1,580,362
10,055,849
Hours for
meals on
wheels
458,283
1,117,707
209,654
26,326
1,811,970
Hours for
Hours for linen transport trips
791
332,142
447,083
1,017,510
41,931
381,719
4,497
590,672
494,302
2,322,044
Total hours
2,406,783
7,578,346
2,497,179
2,201,857
14,684,164
FTE staff
1,401
4,412
1,454
1,282
8,549
(a) FTE based on 38 hours per week, adjusted for recreation leave, sick leave and long service leave.
Source: Access Economics calculations.
44
Making choices: future dementia care
VALUE OF COMMUNITY CARE FOR PEOPLE WITH DEMENTIA
2.3.3
The value of community care for people with dementia is based on total expenditure, not just
expenditure on the labour force. Care cannot be provided without the underlying capital
support (buildings and computers etc).
Bottom up
Hogan (2004) estimated the unit cost of services including the cost of labour, capital, and
materials in 2002–03 at $1,528 per recipient aged 65 or over for HACC and $12,832 for each
community aged care package (EACH packages were not provided at the time of the Hogan
Review). Inflating to 2007-08 at 3.6% per annum based on the average increase in
government welfare expenditure between 1998-99 and 2005-06 (AIHW, 2007d), the
equivalent unit costs in 2007-08 are:
$1,824 for HACC; and
$15,314 for CACP.
Based on Hogan (2004), the value of HACC dementia in 2008 would be around
$75.5 million, and CACP dementia around $111.7 million (Table 2–21). Access Economics
(2003) estimated expenditure on HACC for people with dementia (including Alzheimer’s
Australia programs) was around $2,071 per person at home with dementia, or, taking
account of those who may not access the services (about 19%), $2,554 per person per
annum ($3,048 in 2007-08 inflated at 3.6% per annum). The resulting value of HACC
dementia in 2008 is $126.2 million (Table 2–21). For CACP, EACH and EACH-D, the most
recent Australian Government subsidy rates were:
For CACP as of 1 July 2007, the daily subsidy rate was $33.97;27
EACH are equivalent to the current daily subsidy rate for RCS 2 ($113.55 as of June
2007);28 and
EACH-D are equivalent to RCS1 ($125.23).
Multiplied by the number of days of service provided, these daily subsidies add to
$21.2 million funding for CACP, $26.5 million for EACH clients and $24.7 million for EACH-D
(Table 2–21). Care recipients also contribute. The Australian Government sets the
maximum level of the daily care fees that providers may ask CACP, EACH and EACH-D
recipients to pay. From 20 September 2007, the maximum contribution for those on the
basic aged pension was $6.49 per day. For those whose income exceeds the basic rate of
pension, the maximum fee is 17.5% of the person’s income to the level of the basic pension,
plus up to 50% of income (minus tax and the Medicare levy) above the basic pension.29
Assuming all clients pay $6.49 per day, their contributions would be $2 million for EACH and
$1 million for EACH-D in 2008.
In addition:
27
For meals on wheels, in Queensland, in July 2007, there was a $2 subsidy per meal
and clients paid between $5 and $10 per meal. In NSW, the meal price was between
http://www.health.gov.au/internet/wcms/publishing.nsf/Content/ageing-commcare-comcprov-ccpindex.htm
28
http://www.health.gov.au/internet/wcms/publishing.nsf/Content/ageing-commcare-comcprov-eachdex.htm
accessed 16 April 2008
29
http://www.health.gov.au/internet/wcms/publishing.nsf/Content/ageing-commcare-comcprov-eachdex.htm
accessed 16 April 2008
45
Making choices: future dementia care
$4.50 and $9.00 per meal. In Victoria in 2007-08, fees for delivered meals were $7.40
and the subsidy was $1.36. Based on the Victorian unit cost data, meal deliveries cost
on average $8.76 per meal — an Australia-wide total value of $26.9 million for
community care meal preparation and delivery.
For linen deliveries, a reasonable estimate is $7.50 based on an average of the high
and low SA HACC unit costs for 2008 09 — an Australia-wide total value of $6.3 million
for community care linen deliveries.
For transport trips, based on data on HACC unit costs in NSW and SA, an average unit
cost of $30.20 is used — an Australia-wide total value of $52.3 million for community
care transport trips.
TABLE 2–21: VALUE OF HACC AND CACP FOR DEMENTIA 2008 (BOTTOM UP ESTIMATES)(A)
Access Economics 2003
Access Economics 2007-08
Hogan (2004) 2002-03
Hogan (2004) 2007-08
Aust govt subsidies 2008
Carer contribution 2008
Meals on wheels
Linen deliveries
Transport trips
Total MOW, linen and transport
Total (based on Aust govt subsidies)
Total based on Hogan (2004)
Total based on Access Economics
$ Per client per year
HACC
CACP
2,554
na
3,048
na
1,528
12,832
1,824
15,314
HACC
Total 2008 ($ million)
CACP
EACH
126.2
na
75.5
111.7
21.2
4.1
16.6
5.7
23.3
45.6
70.9
157.3
6.8
0.0
7.6
14.4
89.9
140.6
EACH D
26.5
1.5
3.1
0.5
8.7
12.4
40.4
24.7
1.3
0.4
0.1
13.5
14.0
40.0
(a) Note that estimates from different sources have a different scope and method of derivation.
Top down
In 2006-07, $1.52 billion was spent on HACC services by Australian, state and territory
governments (SCRGSP 2008: Table 13A.45). NSW, Victoria, SA, Tasmania and the NT
contributed a further $118.8 million (other states were unable to supply estimates) (SCRGSP
2008:Table 13.4). In 2006-07, Australian Government funding was:
$405 million for CACP;
$103.9 million for EACH; and
$25.1 million for EACH-D (DoHA 2007:36).
Funding for these programs is not itemised separately in the Australian Government portfolio
budget papers for 2007-08. Hence, 2006-07 funding has been inflated by 3.6% based on
AIHW (2007d) and multiplied by the proportion of clients who have dementia. The latter
implies that spending per client is broadly similar whether or not dementia is present, which
is reasonable (see above). Estimates of expenditure on recipients of community care who
have dementia are in Table 2–22, based on applying the estimates above of recipients with
dementia as a proportion of total recipients (5.2% for HACC, 18.4% for CACP, 32% for
EACH and 100% for EACH-D). Note that the estimates in Table 2–22 do not include capital
payments.
Meals on wheels has been added by estimating client payments only (not including
government subsidies) as this is not included in government expenditure and paid for
by clients.
46
Making choices: future dementia care
Expenditure on transport trips has not been included as it is not clear what proportion
of these are subsidised by government.
TABLE 2–22: HACC, CACP, EACH AND EACH-D DEMENTIA FUNDING, $ MILLION
HACC
85.2
88.3
5.8
94.0
2006-07
2007-08 (estimated)
Meals on wheels
Total 2007-08
CACP
74.5
77.2
14.0
91.2
EACH
33.2
34.4
2.6
37.1
EACH D
25.1
26.0
0.3
26.3
Source: Calculations by Access Economics.
An approximate estimate of the value of community care provided to people living
in the community with dementia in 2008 is at least $94 million for HACC, between
$91 million and $157 million for CACP (a mean of $124 million), and around $40
million for EACH and similarly for EACH-D — in total, approximately $249 million
to $288 million (and noting that this is probably conservative given the elements
of expenditure not able to be included as described above).
2.4
CONCLUSION
In 2008, 60.3% of people with dementia (137,182) were living in the community. Around
85,100 received no formal care (37% of all people with dementia).
The 63% of people with dementia who received formal care were cared for by 84,000 formal
(paid) FTE staff. Each person received around 1,012 hours of formal care30 (Table 2–23).
Most formal care staff worked in RACFs (around 78,000 FTEs cared for the 90,200
people with dementia living in RAC).
The residual formal care staff (5,855 FTEs) cared for 52,000 people with dementia
living in the community and receiving formal care.
In addition, volunteers provided up to 8.4 million hours of unpaid formal care in 2008.
Around 2,174 FTE volunteers contributed 3.73 million hours of care for people with
dementia in RAC facilities (41 hours per person with dementia in RAC).
Around 2,695 FTE staff, the vast majority of whom were volunteers,31 provided
4.63 million hours of care to people with dementia in the community who received
HACC, CACP, EACH and EACH-D (89 hours per person with dementia receiving
formal community care).
30
Per person with dementia who received formal care.
31
Given differences in staffing and delivery arrangements across community care organisations, it is not possible
to estimate the split between volunteers and paid staff in community care. These volunteers represent people
providing meals on wheels, transport trips and linen deliveries. Only the last is mainly commercial.
47
Making choices: future dementia care
TABLE 2–23: PROVISION OF FORMAL (PAID) CARE TO PEOPLE WITH DEMENTIA(A)(B)(C), 2008
Residential location
People with
dementia (%)
Hours of
formal (paid)
care
Formal
(paid)
FTEs
Hours of
formal
care per
pwd
Formal
FTEs per
pwd
Living in the community
with no assistance
85,125(37)
0
0
0
0.0
Living in the community
with HACC
41,399(18)
1,615,567
941
39
0.0
Living in the community
with CACP
7,291(3)
4,996,045
2,909
685
0.4
Living in the community
with EACH, EACHD
3,368(2)
3,444,237
2,005
1,023
0.6
Living in RAC (RCS 5-8)
15,061(7)
20,408,293
11,882
1,355
0.8
Living in RAC (RCS1-4)
75,107(33)
113,531,075
66,099
1,512
0.9
143,995,217
83,835
Total
227,350(100)
1,012(d)
0.6(d)
(a) FTE based on 38 hours per week, adjusted for recreation leave, sick leave and long service leave. (b) Based
on an average of ANHECA and Bentley’s MRI estimates for high care RAC. (c) Excludes a large number of
HACC, CACP, EACH and EACH-D services provided to people with dementia living in the community such as
meals, linen deliveries and transport trips, as these are not measured in hours. (d) Averages calculated only for
people receiving formal care.
Source: Access Economics calculations.
Comparisons with other older Australian studies suggests that the proportion of people with
dementia living in the community has risen over time (although there are differences in
methodology and data sets across studies).
Doyle et al (2005) estimated 57% of people with dementia lived in the community in
2005.
The AIHW (2006) estimated that 57% of people with dementia were living at home in
2003.
Rosewarne et al (2000) estimated that 52.1% of people with dementia were living in the
community in 1999.
The proportion of people with dementia cared for at home appears low compared with
international studies (eg, Wimo et al (2007) — 73%, and Alzheimer’s Europe (2007) — 84%).
Valuing the formal sector community care hours at the replacement valuation level ($27.15
per hour) suggests that the total cost per annum was $272.8 million in 2008, which
triangulates well with the published government data on the actual costs; this provides a low
estimate of $248.6 million and a high estimate of $288.1 million. Valuing the RAC services
using top-down and bottom-up estimates from published data sources provides estimates of
$3.6 billion and $5.1 billion respectively.
If volunteer hours are valued at the opportunity cost of family carers, they are worth
$16.2 million and $20.1 million and respectively. Table 2–24 provides a summary.
48
Making choices: future dementia care
TABLE 2–24: HOURS OF CARE AND VALUE PER ANNUM, BY TYPE OF CARE, 2008
Type of care
m hours
$m pa (low)
$m pa (high)
Informal care
Community care (paid)
Community care volunteers
RAC
RAC volunteers
203.4
10.0
4.6
133.9
3.7
881.2
248.6
20.1
3,641.0
16.2
5,523.5
288.1
20.1
5,064.3
16.2
Total
355.8
4,807.0
10,912.1
49
Making choices: future dementia care
3. PROJECTIONS FOR THE FUTURE
3.1
ESTIMATED NUMBER OF PEOPLE WITH DEMENTIA TO
2050
Access Economics previously derived epidemiologically based estimates of the prevalence
of dementia (Access Economics, 2005a). The prevalence rates and projections are in Table
3–1 and Table 3–2.
TABLE 3–1: META-ANALYSIS OF PREVALENCE RATES, BY 60+ AGE GROUP AND GENDER (%)
Source: Access Economics (2005a).
50
Making choices: future dementia care
TABLE 3–2: DEMENTIA PREVALENCE BY AGE AND GENDER, AUSTRALIA, 2000-2050
AUST ('000)
2007
2008
2009
2010
2020
2030
2040
Male
0-59
60-64
65-69
70-74
75-79
80-84
85-89
90-94
95+
TOTAL Male
0.8
6.2
6.8
10.8
14.7
20.5
15.4
8.4
2.9
86.5
0.9
6.6
7.0
11.2
14.6
21.2
16.5
8.7
3.1
89.9
0.9
6.8
7.3
11.7
14.7
21.9
17.6
9.0
3.4
93.3
0.9
7.1
7.7
12.2
14.7
22.4
18.6
9.7
3.7
96.9
0.9
8.1
10.5
19.1
21.7
28.8
24.3
18.3
8.0
139.6
0.9
8.5
12.3
22.4
30.4
47.5
38.6
26.0
12.8
199.4
0.9
8.6
12.8
23.8
36.2
57.1
56.0
45.4
21.8
262.5
% of Male Population
% M of total Prevalence
Female
1%
39%
1%
40%
1%
40%
1%
40%
1%
42%
2%
43%
2%
42%
0.8
3.2
5.1
11.2
18.9
30.8
32.2
21.9
9.3
133.5
0.8
3.4
5.3
11.6
18.7
31.3
33.9
22.4
10.0
137.5
0.8
3.6
5.5
12.0
18.6
31.8
35.5
22.8
10.8
141.4
0.8
3.7
5.8
12.4
18.7
31.9
36.8
24.0
11.6
145.6
0.9
4.4
8.2
19.4
25.8
37.3
41.0
35.9
20.4
193.3
0.9
4.6
9.5
23.0
37.2
59.9
59.1
45.0
26.9
266.0
0.9
4.5
9.9
24.1
43.3
72.0
86.8
74.9
40.1
356.5
1%
61%
1%
60%
1%
60%
1%
60%
2%
58%
2%
57%
3%
58%
1.7
9.4
12.0
22.0
33.6
51.3
47.7
30.3
12.2
220.0
1.7
10.0
12.3
22.8
33.4
52.5
50.5
31.1
13.1
227.3
1.7
10.4
12.8
23.6
33.3
53.7
53.1
31.8
14.1
234.6
1.7
10.8
13.4
24.5
33.4
54.3
55.4
33.7
15.3
242.5
1.7
12.5
18.7
38.5
47.5
66.1
65.3
54.2
28.4
332.9
1.8
13.1
21.8
45.4
67.6
107.3
97.7
71.0
39.8
465.4
1.8
13.1
22.7
47.9
79.5
129.1
142.8
120.3
61.9
619.0
1%
1%
1%
1%
1%
2%
2%
0-59
60-64
65-69
70-74
75-79
80-84
85-89
90-94
95+
TOTAL Female
% of Female Population
% F of total Prevalence
Persons
0-59
60-64
65-69
70-74
75-79
80-84
85-89
90-94
95+
TOTAL Persons
% of Population
Source: Access Economics (2005a).
The AIHW (2006) most recently produced estimates of dementia prevalence that are based
on the meta analysis by Lobo et al (2000), with rates for those aged less than 60 years from
Harvey et al (2003). Averaging of prevalence rates across all those aged 85 or over means
that the AIHW (2006) prevalence estimates are lower than those of Access Economics
(2005a). As the AIHW (2006) notes, evidence from the more recent meta-analyses suggests
that the prevalence of dementia in Australia in 2003 among Australians aged 65 years or
older was between 136,000 (Ritchie et al,1992) and 193,000 (Ritchie and Kildea 1995) (5.3%
to 7.6%) — encompassing both the AIHW and Access Economics estimates. Since the
51
Making choices: future dementia care
Access Economics estimates are more granular, they are used for the remainder of this
report.
TABLE 3–3: AIHW ESTIMATES OF DEMENTIA PREVALENCE IN 2003
Source: AIHW (2006).
3.2
THRESHOLD ISSUES FOR MODELLING
3.2.1
ARE DIFFERENT TYPES OF CARE COMPLEMENTS OR SUBSTITUTES?
From an economic viewpoint, providing informal care is a complex decision made by the
carer to spend time with the person with dementia, and in most cases to expend limited
resources for an improvement in welfare for that person. This is often at the expense of the
family carer such as an increase in stress levels, emotional impacts through feelings of grief,
monetary expenditure, and a reduction in time devoted to other activities. Family carers also
gain benefits from providing informal care, for example through recognising their efforts are
generating a safe and comfortable environment and improving physical and mental health of
the person receiving care.
If a person is cared for in the community, the availability of family and friends to provide
informal care tends to reduce the need to use formal community care. In the case of a
person having no access to informal care, formal community care is the only avenue for care.
In both cases, informal and formal community care are substitutable.
However, as dementia progresses, the need for care increases. The decision to place a
person with dementia into a RACF takes into consideration the needs of the person with
dementia and the availability of other types of care, such as informal and formal community
care. The person with dementia is able to stay out of residential care as long as the level of
informal and formal community care is adequate. Consequently, informal and formal
community care act as substitutes for residential care.
Preventing institutionalisation for people with moderate to severe dementia may require
different types of community care services than those that support someone with mild
dementia. In some situations informal care may not be able to substitute for this type of care
– for example, dealing with specific complex health conditions. If the level and type of formal
community care is inadequate, then the person with dementia may need to enter a
residential care facility and the demand for informal and formal community care will be
reduced. In this case, informal and formal community care are complementary in that a
reduction in the demand for or supply of one, either through a constraint on resources or an
52
Making choices: future dementia care
increase in costs, will lead to a reduction in the demand for or supply of the other as the
person with dementia enters residential care.
Once the person enters a RACF, he or she is still likely to receive informal care, although the
nature of care will probably change and the amount of time spent providing informal care
may fall. Informal care then becomes complementary to RAC rather than a substitute. For
example, informal care can provide emotional support to the person with dementia while the
residential carers provide higher skilled tasks. But RAC is also likely to substitute for informal
care, especially if the person with dementia was living with the family carer. Furthermore,
formal community care may still be provided, for example providing transport services,
although the level and types of care change compared to when the person with dementia
was living at home. In this case, RAC is used as a complement to formal community care,
but a substitute for other types of formal community care, such as providing personal
assistance and preparing meals.
The individual needs of a person with dementia and vast differences in social support
networks throughout Australia means there is a complex relationship between informal care
and formal care. Informal care and formal care can occur simultaneously or can precede
each other. They can complement each other or substitute for each other. Or, informal care
and formal care can complement and substitute for each other at the same time. As such, it
is challenging to model the impacts of a change in the demand for or supply of one type of
care on the demand for other types of care.
3.2.2
CONSUMER-DIRECTED STRATEGIES32
Consumer-directed care (CDC) aims to give people with dementia and their carers more
choice and control over their care, particularly community care, than they would have with a
set standard program. CDC provides a spectrum of options that extends from income
support (such as cash and vouchers) to agency services and case management.
Objectives of CDC are to provide flexibility in selecting:
which services are received;
when services are received; and
who is the service provider.
In a budget-holding model, people with dementia and their carers would manage their own
individual services budget. This can encourage a more efficient allocation of resources, but a
key input is adequate access to information about service and provider options.
Tilly and Rees (2007) discuss ways to make CDC programs dementia-friendly and the
potential for Australia to integrate CDC principles into its community care programs, noting
that:
People of all ages with disabilities and their carers, including dementia families,
generally benefit from participation in CDC. International studies of these
programs across a number of different countries with varying cultural traditions
and programs show that:
32
This section is drawn largely from Tilly and Rees (2007).
53
Making choices: future dementia care
• Program participants of all ages and their family carers have better outcomes
related to quality of life, independence, and satisfaction with care than those who
rely on home care agencies.
• Quality of care is at least as good in CDC programs as it is in traditional
programs.
• There is no systematic evidence of abuse or neglect of participants in CDC
programs.
They note, however, that people with dementia and their families face some special
challenges when participating in CDC programs because of the complex symptoms and
progressive decline in cognitive functioning that are the hallmarks of dementia, which mean
that needs can vary considerably at different times and for different people.
Carers benefit from the ability to tailor care to the needs of their loved ones and
their own needs for support. In addition, people with dementia retain the ability to
indicate who should make decisions on their behalf and to make their
preferences about services known and to identify someone they wish to have
handle health and personal care decisions for them.
In CDC programs it is important to ensure that carers of people with dementia
have the help they need to manage services and assure quality. This type of help
involves identifying participants with dementia and ensuring they have
representatives who can act on their behalf; providing assistance to carers,
ensuring that program staff have dementia care expertise, and monitoring quality
of care. (Tilly and Rees, 2007)
Howe (2003) explored the common features of CDC and the relevance of different CDC
models in Australia, concluding that:
CDC is best seen as one option among many when looking to innovations in
Australia… [We need] to graft them on to the elements of consumer direction that
already exist in our own programs and so grow our own hybrids that are suited to
local conditions and that will strengthen the culture of our care.
Alzheimer’s Australia argues that Australia is well placed to experiment with CDC because of
our comprehensive existing community care system, and suggests that approaches to select
from could include:
making the brokerage options we have work better at the professionally managed end;
providing cash, vouchers or budgets in place of the current packages that can be used
for the services of the person’s choice;
the more radical step of giving people with dementia and their carers genuine choice
between residential and at home care – between residential low care and high care
and CACPs and EACH/EACH-D respectively; and
allowing carers to choose how ‘brokerage’ funds are spent for respite.
The survey in the next section helps to inform service delivery options by determining what
attributes current and former informal carers value in a budget-constrained world. As the
prevalence of dementia grows, and resources within the health care sector become even
more scarce, it will be important to continue to undertake research on the preferences of
Australian carers. This is because it is unclear whether carers prefer the responsibility
associated with greater control over the care provided.
54
Making choices: future dementia care
3.3
PROJECTED CARE NEEDS AND OPTIONS
3.3.1
SURVEY METHODOLOGY
The primary purpose of the survey was to determine the preferences for attributes of
community care and residential care in order to determine what characteristics of care are
valued the most. Although the survey does not determine factors that impact the choice
between informal care and formal community care (for example, the willingness of family
carers to provide labour or whether informal care and formal care are complements or
substitutes), it does provide an indication regarding what services comprise the demand for
formal community care and residential care.
To determine preferences for the attributes of care, a choice modelling experiment (also
known as a discrete choice experiment) was used. Choice modelling is a survey technique
that was originally developed in the marketing field to determine how individuals choose
between alternative products or services. It is based on consumer demand theory, which
states that preferences for products (or services) are determined by the combination of the
product’s attributes, and that individuals compare the attributes across all other options when
choosing their most preferred product. For example, the demand for pizza is determined by
the demand for alternative toppings, type of crust, price and other attributes.
Results from the choice modelling experiments were used to determine the most valued
attribute within care and to rank care attributes from most valued to least valued. This was
done by changing the levels of each attribute of care and calculating the impact on the
probability of choosing the ‘new’ care option using estimates of the value for each attribute
derived within the survey.
3.3.1.1
DELIVERY OF THE SURVEY
In a perfect world, the preferences of individuals who decide on whether a person with
dementia is cared for informally or formally in the future would be collected. However, it is
problematic to determine who will be caring for a person with dementia in the future, so a
proxy for preferences were sought from individuals who are expected to have similar
preferences. These include people who:
are currently caring for a person with dementia; and
have previously cared for a person with dementia but are no longer doing so.
Within the choice modelling experiment, respondents were required to choose their most
preferred care option by looking at care attributes at alternative levels. As part of this
process, respondents implicitly trade off levels across attributes. For example, one
hypothetical care option may have better quality of care but the out-of-pocket costs may be
greater, so respondents have to decide whether the additional quality is worth the additional
cost. For respondents to undertake this task, they needed to view all attributes and levels
together.
A web based survey was implemented that allowed respondents to take their time in
comparing attribute service levels across alternatives when making their most preferred
choice. The use of the Internet to elicit preferences in choice modelling surveys is relatively
new, although it has been used effectively in the context of eliciting preferences for health
care. One of the primary benefits of using Internet questionnaires is that it is a relatively
inexpensive method of collecting responses. This is especially useful if a wide geographical
coverage is required as Internet charges are not a function of distance. Other advantages of
Internet questionnaires include:
55
Making choices: future dementia care
the respondent has time to think about the choices in the context of their situation, to
consult additional information, and to review their responses;
it is easier to answer sensitive questions such as those that present a moral dilemma,
or those that require personal information; and
there is no scope to introduce interviewer bias such as social desirability effects within
the survey.
The major disadvantage from using a web based survey is that it will miss out on preferences
from those who are are unfamiliar with the Internet, or do not have access to a computer,
which is generally older individuals. However, this is only a concern if their dementia care
preferences are different from those who do participate in the survey.
In order to capture a broad range of preferences, respondents were sourced from the
Internet using three means – from information directing people to the Internet survey that
was given out to people visiting Dementia and Memory Community centres, a link to the
survey on the Alzheimer’s Australia website, and the use of a database of individuals from
Pureprofile. Pureprofile is a private Internet company that manages a panel of individuals
who have signed up of their own accord through the Internet. At the start of 2007, Pureprofile
had around 420,000 account holders aged 18 years or older, recruited through organic
search activity, search engine marketing, permission-based affiliate marketing, redemption
partner alliances, and advocate programs based on account holder location, demographic
profile, Internet behaviour, or socio-economic characteristics.
Account holders were randomly invited by Pureprofile to undertake the survey. The invitation
informed account holders of the intention of the survey and the expected payment associated
with the survey. An account holder received a payment into their account when they
completed the survey, commenced the survey but did not complete it, or were screened
out.33
3.3.1.2
AN OVERVIEW OF THE CHOICE MODELLING EXPERIMENT
One of the main differences between a choice modelling survey and other types of surveys is
that respondents are not asked directly what attributes they value. Instead, the value placed
on each attribute is implicitly revealed by observing the choices respondents make over
different scenarios. This means there is less scope for respondents to strategically
manipulate the results.
The design of the choice modelling experiment required developing a set of scenarios
(choice set), where each scenario had two alternative care options described by care
attributes and their levels (see Table 3–4 and Table 3–5). Within the survey there were two
experiments – one for formal community care and the other for residential care – and
respondents were randomly allocated to either the community care experiment or residential
care experiment. Once allocated to an experiment, respondents were asked to choose their
most preferred care option from two alternatives over eight different scenarios
(ie, respondents had to make eight choices between two different types of care that were
different for each choice).
When determining the number and types of attributes to use in the choice modelling
experiment it is important to make the choice between alternatives as close to those choices
that would be faced by respondents in real life. Hensher and Rose (2005) note:
33
See www.Pureprofile.com for more information
56
Making choices: future dementia care
Realism in stated choice experiments can be captured by asking respondents to
make ‘choices’ between a finite but universal set of available alternatives, similar
to those actions they would take in real markets. However, for any individual
respondent, realism may be lost if the alternatives, attributes, and/or attribute
levels used to describe the alternatives do not realistically portray that
respondent’s experiences or, in terms of ‘new’ or ‘innovative’ alternatives, are
deemed not to be credible.
Attributes and levels are typically chosen through literature reviews, consultation with health
care experts, or consultation with sample groups. The most important issue within this study
was to ensure the chosen attributes were those characteristics of care that impact the
decision to choose between alternative types of care and that they had policy relevance.
A literature review was initially used to determine the attributes and levels for formal
community care and residential care services. The range of levels for each attribute was also
initially determined from the literature. However, in order to supplement this process with real
life experiences, consultation was undertaken with both Alzheimer’s Australia and their
National Consumer Committee (NCC), who provided feedback regarding proposed attributes
and levels. Attributes and levels used within the community care experiment and the
residential care experiment are presented in Table 3–4 and Table 3–5 respectively.
The number of alternatives that could be presented to respondents depends on the number
of attributes and the number of levels used to describe the alternatives. A full factorial design
will have (l1k1 * l2 k2 *...* ln kn ) alternatives, where l is the number of levels, k is the number of
attributes. However, the number of alternatives developed from a full factorial design is
usually too large and places a heavy cognitive burden on respondents. For example, the full
factorial design for the community care experiment would have 32,768 alternatives (as it has
seven attributes with four levels and one attribute with two levels, or 47.21) from which the
respondent would have to choose.
In order to reduce the cognitive burden imposed by full factorial designs, a fractional factorial
design was employed. This type of design decreases the number of alternatives while still
achieving acceptable parameter estimates and favourable statistical properties. The primary
goal of the design was to elicit as much information as possible from respondents subject to
the constraints of the survey. The fractional factorial design determined the optimal
combination of levels across attributes and the optimal combination of alternatives within
each scenario to achieve this goal.
57
Making choices: future dementia care
TABLE 3–4: ATTRIBUTES AND LEVELS USED IN THE COMMUNITY CARE EXPERIMENT
Attribute
General home support services such as
shopping, transport, and cleaning are
A dementia care case worker
A qualified person who can provide support
for a specific need at home is
Community centres that offer counselling,
recreational activities, education, and
information services are
A Helpline that can provide advice,
information, and referral to services is
Emotional support for those caring for
someone with dementia is
Respite care is
The out-of-pocket cost to obtain community
care services is
Level
3
3
3
3
3
Available twice a week
3
Is not available
3
3
3
3
3
Not available
3
3
3
3
3
3
3
3
3
3
Available during the working week only
3
Provided by a counsellor at a clinic on an
individual basis
3
Available regularly and for extended periods of
time (including holidays)
3
Available regularly but only for part of a day at a
time
3
3
3
3
3
3
Available for emergencies/special events only
Available once a week
Available once a fortnight
Not available
Can develop an individualised care program
and organise community care services
Available once a month
Available once a fortnight
Available once a week
Available during the working week and on
weekends
Available on weekends only
Not available
Available 24 hours a day
Available between 7am and 10pm
Available during working hours
Not available
Not provided
Provided over the phone by a counsellor
Provided through group meetings with a
counsellor at a clinic
Not available
$0 per week
$25 per week
$50 per week
$75 per week
58
Making choices: future dementia care
TABLE 3–5: ATTRIBUTES AND LEVELS USED WITHIN THE RESIDENTIAL CARE EXPERIMENT
Attribute
Distance between yourself and the
residential care facility is
The residential care facility has
Different cultural backgrounds and
recreational needs (beyond the minimum
required by law) can be accommodated
The skills of staff are
The residential care facility has the capacity
to provide qualified services for
Visiting hours are
The accommodation bond is
The cost for accommodation (in addition to
payments made from a pension) is
Level
3
3
3
3
3
10 minutes away
3
Some private facilities (room and bathroom
only)
3
3
Limited private facilities (room only)
3
3
3
3
3
3
3
On an individual basis
3
Early and moderate stages of dementia. The
resident may have to move as the condition
advances
3
Fully flexible, family and friends CAN stay
overnight
3
Fully flexible but family and friends CANNOT
stay overnight
3
3
Restricted to between 7am and 10pm
3
3
3
3
3
3
3
3
$100,000
30 minutes away
60 minutes away
90 minutes away
All private facilities (room, bathroom, and
outdoor area)
No private facilities (room, bathroom and
outdoor areas all shared)
On a group basis
On special occasions only
Never
Specialised in providing dementia care
At a minimum standard required by law
All stages of dementia, the resident will not have
to move locations as the condition advances
Restricted to between 8am to 11am and 5pm to
8pm
$200,000
$300,000
$400,000
$30 per day
$60 per day
$90 per day
$120 per day
Examples of one hypothetical scenario faced by respondents within the formal community
care experiment and one hypothetical scenario faced by respondents in the residential care
experiment are shown in Figure 3-1 and Figure 3-2 respectively.
59
Making choices: future dementia care
FIGURE 3-1: SCREEN SHOT OF ONE CHOICE SCENARIO IN THE COMMUNITY CARE EXPERIMENT
60
Making choices: future dementia care
FIGURE 3-2: SCREEN SHOT OF ONE CHOICE SCENARIO IN THE RESIDENTIAL CARE EXPERIMENT
3.3.1.3
OUTLINE OF THE SURVEY
A schematic showing an overview of the survey process from start to finish is shown in.
Figure 3-3. There are two parts to the survey. The first is the choice modelling experiment,
which asks respondents to choose their most preferred dementia care option over eight
different scenarios. There are two choice modelling experiments – formal community care
and residential care – and respondents are randomly allocated to either one.
61
Making choices: future dementia care
FIGURE 3-3: SCHEMATIC REPRESENTATION OF THE SURVEY PROCESS
Community care
experiment
Respondents must
choose two hypothetical
community care options
across eight different
scenarios.
Survey start
Random
allocation
Have you cared
for someone
with dementia
(either currently
or in the past)?
Not eligible
participate
survey
Yes
to
in
Alternatives are made up
of eight attributes
containing seven service
attributes and a cost
attribute
Part I
Survey introduction
describing dementia
and the purpose of the
survey
Random
allocation
No
Questions for those who
are currently providing
care for a person with
dementia
Currently
providing
care
Respondents are
asked questions on
the difficulty of
choosing alternative
care options
Residential care
experiment
Respondents must
choose two hypothetical
residential care options
across eight different
scenarios.
Alternatives are made up
of eight attributes
containing six service
attributes and two cost
attributes
Part II
Introduction to
questions on the
respondent and the
person with dementia
Includes questions on:
Characteristics of the
respondent;
Characteristics of the
person with dementia;
Level of informal care
provided; and
Attitudes towards
choosing between
alternative care options
Are you currently
providing care to a
person with
dementia or have
provided care but no
longer do so?
Provided
care in the
past
Survey
close
Questions for those who
have provided care for a
person with dementia but
no longer do so
Includes questions on:
Characteristics of the
respondent;
Characteristics of the
person with dementia;
Level of informal care
provided; and
Attitudes towards
choosing between
alternative care options
62
Making choices: future dementia care
The second part of the survey asked questions relating to characteristics that are expected to
impact the choice between alternative care options, such as characteristics of the person
providing care, characteristics of the person with dementia, level of care provided, and
attitudes towards alternative dementia care options. There are two sets of questions – one is
for those who are currently providing care and the other is for those who have cared for a
person with dementia but are no longer doing so. Both ask the same questions but have
slightly different wording to accommodate the past tense.
3.3.1.4
SAMPLE CHARACTERISTICS
The survey was open for a total of eight weeks, between 9 June 2008 and 2 August 2008.
Table 3–6 shows summary statistics for the sample, split between Alzheimer’s Australia
respondents and the Pureprofile network.
TABLE 3–6: SAMPLE STATISTICS, BY MODE
AA network
Pureprofile
Total
Started
Incomplete
Timed out by system
Screened out
Normal completion
number
743
424
34
24
261
number
1,681
71
12
1,295
303
number
2,424
495
46
1,319
564
Started
Incomplete
Timed out by system
Screened out
Normal completion
%
100.0
57.1
4.6
3.2
35.1
%
100.0
4.2
0.7
77.0
18.0
100.0
20.4
1.9
54.4
23.3
In total, there were 2,424 survey starts34. However 495 people did not complete the survey,
46 people were timed out of the system (respondents were automatically logged off the
system if they took more than an hour to complete the survey), and 1,319 people were
screened out at the initial stage of the survey (as they were not currently providing, or had
not provided, informal care to someone with dementia)35 leaving a total of 564 people who
completed the survey. As each respondent made eight choices within the choice modelling
experiment there were a total of 4,512 choices.
Table 3–7 shows there was a slight majority of respondents (54%) who were currently
providing care compared to previous carers.
34
The actual number of people starting the survey may be smaller as some may have started more than once, for
example, if they started it, decided they didn’t have time to finish it so quit the survey mid way through and then
came back at a more convenient time.
35
Nearly all of these people (98%) were screened out in the Pureprofile sample. This is because the Alzheimer’s
Australia network represented a targeted sample while respondents from the Pureprofile network were randomly
invited to undertake the survey. Those screened out were blocked from retrying to enter the survey
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Making choices: future dementia care
TABLE 3–7: PROPORTION OF CURRENT CARERS VERSUS PREVIOUS CARERS
Frequency
%
Currently providing care for a person with dementia
Previously provided care for a person with dementia
307
257
54.4
45.6
Total
564
100.0
It was important that the survey sourced preferences for dementia care from a wide variety of
carers, including the young and the old, as preferences may differ. The age distributions of
respondents and the person with dementia they care(d) for are shown in Table 3–8. The
majority of respondents were aged over 50 with a large proportion (44%) aged between 51
and 70 years. However there was a significant number of respondents who were younger
than 50 years of age. For example, 32% of the sample was aged between 18 and 40 years.
Although the traditional view is that family carers are usually older, the proportion concords
well with the type of relationships the respondents have with the person they provide care to
as shown in Table 3–9. For example, around 58% of respondents either provide informal
care to their mother or father (36.7%), mother-in-law or father-in-law (6.9%) or to their
grandmother or grandfather (14.2%).
TABLE 3–8: AGE DISTRIBUTION OF SURVEY RESPONDENTS AND RECIPIENTS OF CARE
Respondents
18-30
31-40
41-50
51-60
61-70
71-80
81-90
90+
%
15.2
16.3
16.7
24.1
20.2
5.7
1.8
0.0
Total
100.0
Care recipients
Cum %
15.2
31.6
48.2
72.3
92.6
98.2
100.0
100.0
%
3.4
2.1
2.0
7.8
13.1
32.3
31.7
7.6
Cum %
3.4
5.5
7.4
15.2
28.4
60.6
92.4
100.0
100.0
The age distribution of those cared for by respondents was skewed towards those aged
above 60 years, who accounted for around 85% of the sample. There was a large proportion
of care recipients aged between 71 and 90, which is reflective of the typical onset and path of
dementia and the age distribution of dementia. However, there was still a significant
proportion of care recipients who were under 60 years of age (15%), suggesting these
recipients of care are experiencing, or experienced, younger onset dementia.
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Making choices: future dementia care
TABLE 3–9: RELATIONSHIP BETWEEN RESPONDENT AND RECIPIENT OF CARE
Frequency
%
Husband/wife
De facto partner
Mother/father
Mother-in-law/father-in-law
Sister/brother
Sister-in-law/brother-in-law
Son/daughter
Grandfather/grandmother
Another relative
Not a relative
121
9
207
39
10
1
3
80
40
67
21.4
1.6
36.7
6.9
1.8
0.2
0.5
14.2
7.1
11.9
Total
564
100.0
It was also important for the survey to source respondents from a broad geographical region,
including from all states and territories and from both rural and urban environments. This is
because dementia care services vary across these regions, which may impact on
preferences for dementia care. Table 3–10 provides an outline of the proportion of
respondents sourced from each state and territory and across different types of regional
environments. The proportion of respondents closely follows the proportion of the total
population in each state and territory as the sample was stratified in this way. However, there
was still some slight under sampling from Queensland and the NT and some slight oversampling from Tasmania and the ACT, although it is not expected that this will have a
significant impact on the results. In terms of the urban environment, the majority of
respondents (44%) were from the inner suburbs of a state or territory capital, which is
expected as these areas are the most densely populated. Respondents from outer
metropolitan areas of a capital city accounted for 18% while respondents from a large city or
town that is not a capital accounted for 22%. Respondents from small towns, rural areas, and
remote outback areas accounted for the remaining 17%, which reflects their relatively small
populations.
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Making choices: future dementia care
TABLE 3–10: GEOGRAPHY OF RESPONDENT’S PERMANENT RESIDENCE
Frequency
%
State/territory
NSW
Victoria
Queensland
WA
SA
Tasmania
ACT
NT
167
113
91
50
55
36
42
10
29.5
20.0
16.2
8.9
9.7
6.3
7.5
1.8
Regional environment
Inner suburbs of a state/territory capital city
Outer metropolitan area of a state/territory capital city
Large city/town (not a capital)
Small town (less than 10,000 people)
Rural Area
Remote/outback area
247
102
121
45
48
1
43.8
18.1
21.5
8.0
8.5
0.2
Table 3–11 outlines additional respondent and care recipient characteristics such as gender,
country of birth, and Aboriginal or Torres Strait Islander descent. As expected, the majority of
respondents were female (69%) as there tend to be more females providing informal
dementia care in society. The proportion of female carers concords well with the 71% of
female primary carers found in the SDAC (ABS, 2005b). Around 14% of respondents were
not born in Australia, New Zealand, or the UK, compared to around 20% of recipients of care.
Approximately 2% of respondents and recipients of care were of Aboriginal or Torres Strait
Islander descent.
TABLE 3–11: ADDITIONAL RESPONDENT AND CARE RECIPIENT CHARACTERISTICS
Respondent
Recipient
Freq.
%
Freq.
%
Gender
Male
Female
176
388
31.2
68.8
232
332
41.1
58.9
Country of birth
Australia
New Zealand
UK
Other
425
5
58
76
75.4
0.9
10.3
13.5
380
6
68
110
67.4
1.1
12.1
19.5
Aboriginal and Torres Strait Islander descent
10
1.8
12
2.1
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Making choices: future dementia care
SURVEY FINDINGS
3.3.2
Respondents were asked to rank on a scale of one to five whether they felt they had a choice
in taking on the responsibility of providing informal care to the person with dementia. Figure
3-4 shows that 30% of respondents thought they had no choice in undertaking informal care,
and around 12% thought they had next to no choice. This means that 42% of respondents
thought they were in some way compelled to undertake care.
FIGURE 3-4: RANKING ON WHETHER RESPONDENTS HAD A CHOICE IN PROVIDING CARE
30
proportion of sample (%)
25
20
15
10
5
0
Complete choice
2
3
4
No choice
N = 564
Carers provide a large amount of in-kind support to care recipients, in terms of the time
devoted to providing care and the activities undertaken while providing care. The average
amount of time a respondent spends providing informal care is around 24 hours per week,
although there was a large disparity in the distribution of hours providing informal care across
respondents. For example, Figure 3-5 shows there is a general trend down as the number of
hours providing care increases, however there is a large proportion of respondents (20%)
who provide 55 hours or more per week. These respondents are most likely to be living with
the person with dementia and the number of hours spent by the carer is representative of the
full time care that must be provided to some persons with dementia.
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Making choices: future dementia care
FIGURE 3-5: DISTRIBUTION OF HOURS SPENT BY RESPONDENTS PROVIDING INFORMAL CARE
Proportion of respondents (%)
20
15
10
5
0
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55+
Hours providing inform al care
N = 564
Within the hours of care provided by family carers a large range of valuable activities
necessary for the care recipients health and wellbeing is undertaken. Figure 3-6 shows that
nearly 70% of respondents provide transport services or organise transport services for the
care recipient. A large proportion of respondents also go grocery shopping (67%) and do
housework for the person with dementia (65%). More than 50% of respondents prepare
meals, assist with medications, manage finances such as paying bills, and regularly visit just
to say hello and provide company. Over 40% of respondents provide other types of social
support such as organising appointments, have general chats over the phone to provide
regular company, arrange or supervise care services from an agency, and provide personal
assistance such as feeding, bathing, dressing, or toileting. In addition to the services just
mentioned, respondents also undertake a number of other activities while providing care.
Some of these noted by respondents include:
fixing problems created by the person with dementia due to their condition;
attending all medical appointments;
providing emotional support during low times;
ensuring the person with dementia is happy and content;
providing day to day entertainment activities;
providing communication with friends and family; and
assisting with exercising.
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Making choices: future dementia care
FIGURE 3-6: PROPORTION OF RESPONDENTS UNDERTAKING VARIOUS CARE ACTIVITIES
Transporting or organising transport
Grocery shopping
Housew ork, such as doing dishes, laundry, or cleaning
Preparing meals
Assisting w ith medications
Managing finances, such as paying bills
Regular visits just to say hello
Other types of social support
General chats over the phone
Arranging or supervising services from an agency
Personal assistance (feeding, bathing, dressing, or toileting)
Other (please explain)
0
10
20
30
40
50
60
70
Proportion of respondents (%)
N = 564
Given the number of hours spent providing informal care, and the wide range of activities
provided, caring for someone with dementia has a large impact on the carer, both physically
and emotionally. Table 3–12 shows that the physical health of carers has been negatively
affected in 31% of respondents, mental health and emotional wellbeing has been negatively
affected in 53% of respondents, and there has been a negative impact on lifestyle in terms of
reduced time for other activities in 55% of respondents.
TABLE 3–12: PERSONAL IMPACT OF PROVIDING CARE ON THE CARER
Frequency
Negatively affected physical health
Negative affected mental health/emotional wellbeing
Negatively affected financially due to increased costs
Negatively affected financially due to reduced ability to
earn an income
Negatively affected lifestyle in terms of reduced time for
other activities
None of these
Other
% of
respondents
175
296
199
151
31.0
52.5
35.3
26.8
309
54.8
112
34
19.9
6.0
N = 564
Note: Frequency of responses add up to more than the total number of respondents as they were allowed to
choose more than one option.
Caring also has a financial impact on the carer, both because of a reduction in the capacity
to earn and because of a need to spend out of their own pocket when providing care. Table
3–13 shows that of those who were undertaking paid work, around 29% of respondents had
to get in late, leave early or take time off during the day to provide care for the person with
dementia. Around 20% of respondents had to take leave of absence to provide care, around
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Making choices: future dementia care
13% had to permanently reduce their work load, while around 8% of respondents had to stop
work altogether in order to provide care.
Table 3–14 shows that around 83% of respondents provide financial support to the person
with dementia. Although some provide less than $20 per week (13%), others spend a lot
more, with around 43% spending over $50 per week. A small proportion of respondents
spend a substantial amount with around 6% providing more than $200 per week.
TABLE 3–13: IMPACT OF PROVIDING CARE ON EMPLOYMENT
Frequency
Get in late, leave early, or take time off work during the
day to provide care
Take leave of absence to provide care
Go from working full-time to part-time, or take a less
demanding job
Stop working altogether
Turn down a promotion to provide care
Lose any of your job benefits
None of these
Other
% of
respondents
161
28.5
115
74
20.4
13.1
45
47
28
111
13
8.0
8.3
5.0
19.7
2.3
N = 564
Note: Frequency of responses add up to more than the total number of respondents as they were allowed to
choose more than one option.
TABLE 3–14: AMOUNT OF OWN MONEY SPENT PER WEEK PROVIDING CARE
Frequency
%
Cumulative %
$0 per week
$1 - $20 per week
$21 - $50 per week
$51 - $100 per week
$101 - $150 per week
$151 - $200 per week
$201 - $300 per week
$301 or more per week
94
72
156
101
76
34
11
20
16.7
12.8
27.7
17.9
13.5
6.0
2.0
3.5
16.7
29.4
57.1
75.0
88.5
94.5
96.5
100.0
Total
564
100.0
-
The choice between different care options (informal, formal community care, and residential
care) made by the family carer and the person with dementia is complicated. The needs and
wants of both the family carer and the person with dementia need to be evaluated within the
context of their current environment, and consideration must be given to the cost associated
with each care option. Some of the reasons why carers and care recipients choose
alternative care options are shown in Table 3–15.
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Making choices: future dementia care
TABLE 3–15: REASONS WHY ALTERNATIVE CARE OPTIONS ARE CHOSEN
%b
a
Reasons for the respondent being the only person to provide care (n=166)
I was the only person willing to provide care
I am able to handle caring for the person with dementia by myself
The person with dementia does not need or want additional care
I can provide more appropriate care than formal care services
The cost of formal care is too great
I am unaware of any services available for the person with dementia
Other (please explain)
I am unable to access any care services
Reasons for using formal community care (n=313)
It is best for the person with dementia
It relieves some of the emotional and mental stress placed on me
It is best for me
It relieves some of the physical stress placed on me
It is best for other family and friends who provide care
It gives me more time to spend on myself or other activities
Appropriate informal support from family and friends is not available
The financial cost of caring for the person with dementia by myself was too great
Other (please explain)
Reasons for using residential care (n=136)
It is best for the person with dementia
It relieves some of the emotional and mental stress placed on me
It is best for me
It is best for other family and friends who provide care
I was able to get an acceptable place
It relieves some of the physical stress placed on me
It gives me more time to spend on myself or other activities
Community care services were not appropriate for the person with dementia
Other (please explain)
Although appropriate community care services were available, they were not flexible
86.1
58.4
57.8
53.6
38.0
19.9
19.3
9.6
70.0
55.0
46.3
37.4
34.5
33.5
22.4
10.5
5.8
100.0
77.2
75.0
71.3
61.0
51.5
46.3
34.6
19.1
8.8
Note: (a) The person with dementia does not receive care from other family members or formal care.
(b) Frequency of responses add up to more than the total number of respondents as respondents were allowed to
choose more than one option.
Table 3–15 shows that around 86% of respondents (out of a total of 166) believed they were
the only person providing care because there was no one else willing to provide care. This
accords with the results presented in Figure 3-4, where just over 40% of all carers believed
they had no choice, or near to no choice, in providing care. Table 3–15 also shows that just
over half of respondents (58%) believed they were able to handle caring for the person with
dementia by themselves, and therefore did not need anyone else providing care, while a
similar proportion believed the person with dementia did not want, or need, additional care.
Although only 10% noted they were unable to access any services as a reason for being the
only care provider, around 54% believed they could provide better care. This suggests that
services may be accessible but respondents are not happy with the quality of services being
provided. Consequently they are taking it upon themselves to provide what they believe to be
more appropriate care.
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Making choices: future dementia care
Table 3–15 also shows that around 70% of respondents (out of a total of 313) use formal
community care because it is best for the person with dementia. However, formal community
care not only provides benefits to those with dementia but also helps the family carer. For
example, 55% of respondents use formal community care because it relieves some of the
emotional and mental stress placed on them from providing care. Furthermore, 37% noted it
also relieved some of the physical stress.
A similar story is evident for those who use residential care, with 100% of respondents (out of
a total of 136) using residential care because it is best for the person with dementia. This
suggests that when deciding on formal care services, family carers put the needs of the
person with dementia first. A greater proportion or respondents (compared to those using
formal community care) noted that residential care also relieves emotional and mental stress,
which is indicative of the greater burden associated with increased severity of the condition.
3.3.3
ANALYSIS OF SURVEY RESULTS
A conditional logit model was used to analyse the choices made by respondents in the
community care and residential care discrete choice experiments (see Appendix A for a
detailed description of the model). The model has been used to determine the probability of
choosing a hypothetical care option given there is a change in the level of one attribute while
holding levels for all other attributes constant. This provides an indication of the impact each
level has on demand, and therefore the value respondents place on alternative levels of
care. For example, if changing a level for one attribute compared to another results in a
greater impact on the demand for that hypothetical care option, then that attribute’s level can
be considered more valuable to respondents.
The results presented in the following sections represent ‘average’ preferences across all
respondents. In reality, each caring situation is different so it is expected that preferences for
alternative service levels across individuals will vary. For example, the severity of the
condition is expected to alter preferences for alternative service characteristics. Those who
are currently providing care to someone with mild dementia may not have as strong a
preference for high level care compared to other services, such as home help. Those who
provide care to a person with later stage dementia may value the quality of care over other
service characteristics, such as private facilities within a residential care setting.
Another factor that may impact preferences across respondents is their exposure to current
services. For example, those who have used the National Dementia Helpline may value it
more than those who are not familiar with the types of services it can provide. Although
service descriptions were provided within the choice modelling experiment, when making
their choice respondents may have reflected on their experiences with similar services
currently available. Unfortunately this brings in a random component to their choice because
their experiences could not be included in analysing the results as they are unobserved.
Given the individuality of care situations and experiences with dementia care services across
Australia, it is likely a wide range of preferences have been expressed within the choice
modelling survey. However, the results presented in Section 3.3.3.1 and Section 3.3.3.2
represent average preferences for individual service characteristics. To gain a greater insight
into alternative preferences, the sample was split into six groups and the conditional model
was used to determine preferences for alternative service characteristics within these
groups. The results are shown in Appendix B.
Results presented in the next section show that respondents value more care services.
However, more services are only valued if they are quality dementia care services.
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Making choices: future dementia care
Alzheimer’s Australia believes that the provision of current, and any additional, dementia
care services should be based on a set of core principles, including:
valuing the worth of every person;
relating to the person rather than the illness;
maximising autonomy, independence and participation;
responding to the needs of the whole person;
providing an environment and experience that are enriching and meaningful; and
recognising the importance of working in partnership with family and friends of the
person with dementia.
More information on the definition of quality care, the care environment and key elements of
care can be found in Alzheimer’s Australia (2007a, 2007b, 2003).
3.3.3.1
COMMUNITY CARE
Table 3–16 shows the change in the probability (demand) of choosing a community care
option from subsequent changes in the level of care for each attribute (while holding all other
attribute levels constant). Each change in probability is relative to the base case of that
service characteristic not being available.
Table 3–16 shows home support services (such as respite care, shopping, transport and
cleaning) are valuable to respondents. For example, the increase in demand for a care
option that has home support available once a fortnight compared to an option where home
support is not available is around 39%. As expected, the more home care services are
available, the more valuable home support services become. If home support services are
increased to once a week, the demand for that community care option would increase to
around 44% compared to a care option where home support services are not available while,
if they are available twice a week, demand would increase to 55%.
Carers value the support they receive from home support services because it reduces the
burden of home care on the person with dementia and the carer, provides the carer with
more time to spend on themselves, and provides more time for the carer and the person with
dementia to share together. One respondent noted:
It would be more helpful for the government to employ cleaners and gardeners to
do the heavy work and free up the person who is emotionally involved with the
person who has dementia to do the social activities and personal care of their
loved one.
A hypothetical care option that has a case worker that can develop an individual care
program and organise community care services will have around 24% more demand than
one that does not have a case worker available. This result seems intuitive as those caring
for someone with dementia may not be aware of the community care services available
(particularly in the initial stages) and therefore need to spend time sourcing options. This
could be confusing and frustrating at a time when the carer is already vulnerable from the
stress of providing care and the emotional strain that can come with caring for someone with
early stage dementia. In addition, family carers often face a steep learning curve when it
comes to dementia care, which means help in formulating an individual care program from a
person qualified in dementia care is likely to be highly valued. One respondent noted:
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Making choices: future dementia care
From my experiences with giving some care to both my parents when they were
still at home, I feel that providing an assessment by a trained dementia
caseworker was the most important of the choices you provided. They would
know and try to meet the needs of the situation at hand and arrange the
appropriate services.
TABLE 3–16: CHANGE IN DEMAND FOR COMMUNITY CARE FROM CHANGING ATTRIBUTE LEVELS
% change in
demand
Home Support such as shopping, transport, and cleaning
Not available
Available once a fortnight
Available once a week
Available twice a week
Dementia care case worker
Not available
Can develop an individual care program and organise care services
Qualified person who can provide support at home for a specific need
Not available
Available once a month
Available once a fortnight
Available once a week
Community centre that offers counselling, recreational activities,
education and information services
Not available
Available on weekends only
Available during the working week only
Available during the working week and on weekends
Helpline that can provide advice, information, and referral to services
Not available
Available during working hours
Available between 7am and 10pm
Available 24 hours a day
Emotional support for those caring for someone with dementia
Not provided
Provided over the phone by a counsellor
Provided through group meetings with a counsellor at a clinic
Provided by a counsellor at a clinic on an individual basis
Respite care
Not available
Available for emergencies/special events only
Available daily but only for part of a day at a time
Available daily and for extended periods of time (including holidays)
0.0
38.8*
44.3*
54.5*
0.0
24.2*
0.0
1.5
13.1*
19.9*
0.0
1.6
9.5
30.6*
0.0
13.5*
16.9*
18.5*
0.0
14.5*
17.2*
16.6*
0.0
25.0*
35.4*
48.0*
Note: * = significantly different from zero at 5%
In discussions with the Alzheimer’s Australia NCC, some members noted that the role of a
dementia care case worker was fulfilled by an ACAT.
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Making choices: future dementia care
A qualified person who can provide support for a specific need at home once a month will
increase the demand for that care option, but only by around 2%. This is a relatively small
increase and is not statistically different from zero, indicating that respondents have a care
threshold such that small amounts of support for a specific need do not make a difference.
However, if a qualified person can be accessed once a fortnight then the demand for that
care option will increase to 13%, which is statistically significant. Similarly if the qualified
person was available once a week, then demand for that community care option would
increase even further to around 20%, indicating that this is the preferred care level. One
respondent noted:
I was surprised at the lack of training the personal care assistants had. They
seemed to lack a basic understanding about dementia and especially the needs
of the primary carer. I spent a lot of time giving them advice over the phone on
how to manage my mother’s behaviours of concern instead of allowing them to
get on with the job and me not having to worry about what was happening with
my mother.
Members of the NCC noted that the demand for home visits can also depend on the amount
of time that person stays, rather than the regularity of visits. For example, one member
suggested there is a threshold level of care where a small number of hours per visit may not
be valued as it disrupts the carer and the person with dementia for little return. Others noted
they would rather receive greater blocks of hours rather than more regular visits with a
smaller number of hours per visit.
A community care centre that offers counselling, recreational activities, education, and
information services is also valued by carers. However, Table 3–16 shows that respondents
do not place a large value on a community care centre that is only open on the weekends as
the impact on demand compared to there being no community centre is only around 2% and
is not significantly different from zero. This may be because carers cannot visit a community
care centre on the weekend. For example, a carer may not have the time to visit a
community care centre because they provide care to the person with dementia. Alternatively
carers may take the opportunity to have a break from providing care and attend to their own
needs (such as catching up with friends in the workforce) while others are available to
provide informal care.
Even though a community centre that is open during the week increases demand by around
10%, this was not significantly different from zero. This may be because some people can
only attend community care centres on the weekend, especially those who work during the
week, and as such do not value community care centres that are only open during the week.
However, a community centre that is open during the week and on weekends is highly
valued by respondents, increasing the demand for a community care option by around 31%.
This suggests respondents value flexibility in opening times for community centres and that
community centres should be opened during the week and on weekends in order to
accommodate all types of needs. Respondents noted:
A large problem for someone coming into the dementia world is that there seems
to be a very large number of different organisations offering different services and
naive people do not know what they need, let alone where to get help or whom to
ask where to get help.
There needs to be more information about dementia - there are a lot of people
who are 'frightened' by it only because they do not understand it. I found this with
myself, however once I attended some Information Sessions I have become
more 'tolerant' about what is happening to my husband. I am now able to
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Making choices: future dementia care
understand the different levels he is going through, I know that he will 'stagnate'
on a certain level or he may progress quite rapidly.
A Helpline that can provide advice, information, and referral to services is also valued by
respondents. A Helpline available during working hours increases demand for a care option
by around 14%, a Helpline available between 7am and 10pm increases demand by around
17%, while a Helpline available 24 hours increases demand by around 19%, suggesting the
most valuable level of care is the latter. Comments from respondents were:
The main challenge in accessing dementia care was that it seemed to rely to a
very high degree on the knowledge of carers, and their abilities to successfully
navigate bureaucracy.
I would like to see a National Hotline to call for questions regarding care of
dementia sufferer. I spent many hours trying to find answers to questions from
books and the Internet.
However, the difference in the impact on demand between alternative Helpline opening
hours is relatively small and is not statistically different36. This suggests that although
respondents value a Helpline compared to not having a Helpline, respondents may not
attach a large value in having a Helpline available after hours, given trade-offs with other
attributes of community care. This may be because the type of information sourced from a
Helpline (as described within the experiment) is not of an urgent nature so it can be sourced
the next day during working hours. If urgent information is required, then it is likely carers
would not use a national Helpline but call someone closer to home, such as a local GP or a
hospital.
Results regarding a Helpline must be viewed in context with current use of the Alzheimer’s
Australia National Dementia Helpline. NCC members noted this helpline was used as a crisis
line rather than the type of helpline described in the experiment. Consequently, NCC
members thought the Alzheimer’s Australia National Dementia Helpline is valued significantly
more by offering 24 hour services compared to a restricted operating regime.
Emotional support for family carers is also valued by respondents, either provided over the
phone, provided through group meetings with a counsellor, or provided by a counsellor at a
clinic on an individual basis. At first glance the most valued type of support is through group
meetings with a counsellor, which is expected to increase demand for a community care
option by around 17%. This suggests that carers not only want support from a counsellor but
they also value sharing their dementia care experiences with other carers in a similar
situation. However, on average there is no statistical difference in demand for emotional
support provided by a counsellor over the phone compared to emotional support provided
through group meetings with a counsellor at a clinic, or through a counsellor at a clinic on an
individual basis. This may seem counter-intuitive because greater support can be provided
face to face, but some people may not have the time to attend a clinic, thereby trading off
some support for the greater convenience provided by a phone. Respondents noted:
What was important to me at the time of caring was being able to ring an expert
for advice.
36
Wald tests were undertaken to determine whether there is a statistical difference between the coefficient
estimates for each level of care. The test statistics were evaluated at a 5% significance level.
76
Making choices: future dementia care
I personally found the one to one counselling the greatest support in dealing with
my mother’s dementia.
I have been fortunate to tap into the services provided by Alzheimer’s Australia. I
regularly attend the sons and daughters meeting which has not only helped me
but I hope I have helped others. Whilst my own circle of friends has been
supportive it has helped to be able to mix with others who share similar
experiences.
Increased availability in respite care is also valued by respondents. Compared to a care
scenario where respite care is not available, one that has respite care available for
emergencies and special events will increase the demand for that care option by around
25%. If the care option has respite care available daily but for only part of the day at a time
then this will increase the demand for that care option by around 35%. The most valued level
of respite care is one that can be used daily and for extended periods of time (including
holidays). This level of care would increase the demand for a care option by around 48%
compared to a care option that did not have respite care available. One respondent noted:
For myself as a sole carer, daily respite care was a life saver which enabled me
to continue caring for my mother for much longer than I would have been able to
without such strong support. The weekend service was particularly important for
me as it meant I could use the time for a social catch up with friends in the work
force. I would use the time for exercise classes and social catch ups. Being a
sole carer with all of the rest of the family living in rural areas or interstate can be
a very isolating and lonely existence at a time when emotionally you are dealing
with a situation whereby you are caring for your someone with a degenerative
illness who may no longer know who you are and whose behaviour is undergoing
frequent changes as the brain alters. I believe this form of program allows the
carer to keep the person at home for much longer than you could do without it.
This takes the pressure off residential care and live-in respite.
NCC members also noted that small amounts of respite care are valued even if it’s not for
emergencies. However, they also noted that additional respite care is only valued if it is
quality respite care.
Ranking levels of community care from most important to least important
As alternative levels of care within attributes can be compared, so too can alternative levels
of care across attributes. This provides us with the capacity to rank the levels of community
care from most important to least important. The impact on demand for each attribute and a
complete ranking of levels attached to each community care attribute is shown in Figure 3-7.
Figure 3-7 shows that the most valued level of community care is the level associated with
home support services (such as home respite care, shopping, transport, and cleaning) that
can be provided twice a week as this has the greatest impact on the probability of choosing a
care option. In fact, out of the top five ranked attributes of community care, home support
services are ranked first, third and fourth, while respite care is ranked second and fifth.
The importance of home support services and respite services is consistent with the finding
that most carers want to keep the person with dementia out of residential care for as long as
possible. Several respondents stated within the survey that placing a loved one into
residential care was one of the hardest decisions of their life. They would rather that person
be surrounded by family and friends instead of other people with dementia that may be more
severe and therefore upsetting to the person who enters the residential care facility.
77
Making choices: future dementia care
Respondents also acknowledged that there comes a point where home care is no longer
viable because the level of home care support or respite care becomes inadequate in
relation to the severity of the condition or the personal circumstances of the respondent.
Some comments from respondents include:
The most important factors would be respite care availability and/or in-home
support with washing/clothing etc.
Respite, respite, respite - it is too limited in terms of time off. For me caring on my
own the best I could arrange through 2 facilities was 13hrs a week out of 144hrs.
Good day centres with staff trained in dementia care are very important and a
key factor in enabling the carer to keep their loved one at home. Regular
attendance at day centres is wonderful for both the person with dementia and the
carer.
FIGURE 3-7: RANKING OF COMMUNITY CARE ATTRIBUTES
Home support - Available tw ice a w eek
Respite - Daily for extended periods of time
Home support - Once a w eek
Home support - Once a fortnight
Respite - Daily but only for part of the day
Community centre - Working w eek and w eekends
Respite - Emergencies/special events only
Case w orker available
Qualified person - Once a w eek
Helpline - 24 hours a day
Emotional support - Group meetings w ith a counsellor
Helpline - Available 7am and 10pm
Emotional support - Clinic on an individual basis
Emotional support - Over the phone by a counsellor
Helpline - Working hours only
Qualified person - Once a fortnight
Community centre - Working w eek only
Community centre - Weekends only
Qualified person - Once a month
0
10
20
30
40
50
60
Impact on probability (% change)
Table 3–17 shows the relative importance of levels attached to community care attributes,
calculated by dividing the impact on demand of one level by the other level in question. For
example, it shows that home support services available twice a week (represented by A in
the table) is valued around 1.1 times more than respite care that is available daily and for
extended periods of time (represented by B in the table). This was calculated by dividing the
impact on probability for the former (54.5%) by the latter (48.0%). The results presented in
78
Making choices: future dementia care
Table 3–17 for those attribute levels that were not found to have a significant impact on
demand (for example, community care centres open on weekends only and qualified persons
that visit once a month) must be interpreted with caution.
79
Making choices: future dementia care
TABLE 3–17: RELATIVE VALUE OF LEVELS ATTACHED TO COMMUNITY CARE ATTRIBUTES
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
R
S
A
B
C
D
E
F
G
H
1.0
1.1
1.2
1.4
1.5
1.8
2.2
2.3
2.7
3.0
3.2
3.2
3.3
3.8
4.0
4.2
5.7
34.2
37.2
.
1.0
1.1
1.2
1.4
1.6
1.9
2.0
2.4
2.6
2.8
2.8
2.9
3.3
3.6
3.7
5.0
30.1
32.8
.
.
1.0
1.1
1.2
1.4
1.8
1.8
2.2
2.4
2.6
2.6
2.7
3.1
3.3
3.4
4.6
27.7
30.2
.
.
.
1.0
1.1
1.3
1.6
1.6
1.9
2.1
2.3
2.3
2.3
2.7
2.9
3.0
4.1
24.3
26.4
.
.
.
.
1.0
1.2
1.4
1.5
1.8
1.9
2.1
2.1
2.1
2.4
2.6
2.7
3.7
22.2
24.2
.
.
.
.
.
1.0
1.2
1.3
1.5
1.7
1.8
1.8
1.8
2.1
2.3
2.3
3.2
19.2
20.9
.
.
.
.
.
.
1.0
1.0
1.3
1.4
1.5
1.5
1.5
1.7
1.9
1.9
2.6
15.7
17.0
.
.
.
.
.
.
.
1.0
1.2
1.3
1.4
1.4
1.5
1.7
1.8
1.9
2.5
15.2
16.5
I
.
.
.
.
.
.
.
.
1.0
1.1
1.2
1.2
1.2
1.4
1.5
1.5
2.1
12.5
13.6
J
.
.
.
.
.
.
.
.
.
1.0
1.1
1.1
1.1
1.3
1.4
1.4
1.9
11.6
12.6
K
L
M
N
O
P
Q
R
.
.
.
.
.
.
.
.
.
.
1.0
1.0
1.0
1.2
1.3
1.3
1.8
10.8
11.7
.
.
.
.
.
.
.
.
.
.
.
1.0
1.0
1.2
1.3
1.3
1.8
10.6
11.5
.
.
.
.
.
.
.
.
.
.
.
.
1.0
1.1
1.2
1.3
1.7
10.4
11.3
.
.
.
.
.
.
.
.
.
.
.
.
.
1.0
1.1
1.1
1.5
9.1
9.9
.
.
.
.
.
.
.
.
.
.
.
.
.
.
1.0
1.0
1.4
8.5
9.2
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
1.0
1.4
8.2
8.9
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
1.0
6.0
6.5
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
1.0
1.1
A = Home support - Available twice a week
H = Case worker available
O = Helpline - Working hours only
B = Respite - Daily for extended periods of time
I = Qualified person - Once a week
P = Qualified person - Once a fortnight
C = Home support - Once a week
D = Home support - Once a fortnight
E = Respite - Daily but only for part of the day
F = Community centre - Working week and weekends
G = Respite - Emergencies/special events only
J = Helpline - 24 hours a day
K = Emotional support - Group meetings
L = Helpline - Available 7am and 10pm
M = Emotional support - Individual basis at clinic
N = Emotional support - Over the phone
Q = Community centre - Working week only
R = Community centre - Weekends only
S = Qualified person - Once a month
S
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
80
Making choices: future dementia care
3.3.3.2
RESIDENTIAL CARE
Table 3–18 shows the change in the probability (demand) of choosing a residential care
facility from subsequent changes in individual attribute levels while holding all other levels
constant. The demand for each attribute level has been calculated by first setting the level of
care at their worst levels and then sequentially changing the attribute’s level up to the best
level (see Table 3–5 for the levels used in the residential care experiment). Once again the
initial starting point was two hypothetical residential care options with exactly the same levels
of care.
Table 3–18 shows that a residential care facility closer to the respondent’s home is valued by
respondents. For example, a residential care facility that is 60 minutes away from the
respondent’s home compared to 90 minutes will experience around a 15% increase in
demand. A residential care facility that is 30 minutes away will experience an increase in
demand by around 19%, while the most valued amount of time between the respondent’s
home and the residential care facility is 10 minutes. Under this scenario, demand would
increase by around 25% compared to a residential care facility that is 90 minutes away.
Closer residential facilities are valued for two primary reasons. First, it is easier for the
respondent to visit the person in the residential care facility, which means more visits can be
made and it is easier to make visits on short notice if the person with dementia becomes
distressed. This is especially relevant for respondents that rely on public transport. Second, a
close residential care facility can provide greater access for the person with dementia to the
lifestyle they once knew (for example, maintaining the same type of outlook). This means
occasional visits can be made to the respondent’s home. For example, one respondent
noted:
My mum has a cat to which she is very attached and is now living at my place.
Distance from my home is very important so that I will at least make some effort
so that she can visit the cat, which is very important and the thing that brings her
to tears. She is really missing her cat.
A private room and bathroom for the person with dementia in a residential care facility is
highly valued by respondents. A residential care facility that has a private room but
bathrooms and outdoor areas are shared will have around 20% more demand than a facility
that does not have any private facilities. A residential care facility that has a private room and
private bathroom will have around 31% more demand than a facility that only has a private
room, indicating that respondents highly value private bathrooms. A residential care facility
that has a private room, private bathroom and private outdoor area will have around 53%
more demand than a facility that does not have any private facilities and 33% more demand
than a facility that has only a private room, although it will only have 2% more demand from a
facility that has a private room and bathroom. This difference was not statistically significant
and indicates that respondents do not value private outdoor facilities if trade-offs in other
residential care levels have to be made.
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Making choices: future dementia care
TABLE 3–18: CHANGE IN DEMAND FOR RESIDENTIAL CARE
% change in
demand
Distance from residential care
90 minutes
60 minutes
30 minutes
10 minutes
Private facilities
No private facilities (room, bathroom, outdoor)
Limited private facilities (room only)
Some private facilities (room and bathroom only)
All private facilities (room, bathroom, and outdoor area)
Ability to accommodate cultural background and recreational needs
Cannot be met
On special occasions only
On a group basis
On an individual basis
Skills of the staff in providing dementia care
At a minimum standard required by law
Specialised in providing dementia care
Capacity to accommodate all stages of dementia
Early and moderate stages of dementia
All stages of dementia. The resident will not have to move locations as the
condition advances
Visiting hours
Restricted between 8am and 11am and 5pm and 8pm
Restricted to between 7am and 10pm
Fully flexible but family and friends CANNOT stay overnight
Fully flexible, but family and friends CAN stay overnight
Bond
$400,000
$300,000
$200,000
$100,000
0.0
15.3*
18.6*
25.4*
0.0
20.1*
51.1*
53.0*
0.0
12.5*
17.9*
30.2*
0.0
45.7*
0.0
25.3*
0.0
17.6*
8.9
13.5*
0.0
8.3
19.9*
13.2*
Note: * = significantly different from zero at 5%
It is not surprising that respondents highly value private rooms and private bathrooms as it
can help maintain the person’s sense of dignity. In addition, having a private room provides
the opportunity for residents to be surrounded with personal items, which can maintain a
sense of independence. Respondents noted:
I believe that it is cruel to expect a person who has worked their whole life to
acquire a few worldly items to down size into half a room or less when they move
into residential care. All facilities should have private rooms.
I feel that a sense of dignity is required, such as own personal space, therefore if
a choice included a private bathroom, then it was high on my list of priorities.
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Making choices: future dementia care
Shared rooms feel very clinical, like a hospital and not an environment where
people can have a sense of dignity and self-respect.
However, some NCC members suggested that private facilities may not be necessary if the
person with dementia has advanced dementia and the savings are spent providing significant
improvements in dementia care, such as more qualified nurses.
The ability of a residential care facility to accommodate cultural backgrounds and
recreational needs provides a significant value to respondents: The more individualised the
programs, and the more frequently that cultural and recreational needs are met, the more
value respondents place on these services. For example, a residential facility that is able to
accommodate cultural background and recreational needs on special occasions only will
experience a 13% increase in demand compared to a facility that cannot meet these needs.
The ability of a facility to meet cultural and recreational needs regularly on a group basis will
experience an increase in demand of around 18% more than a facility that cannot meet these
needs. A facility that can accommodate these types of needs on an individual basis is valued
the most, increasing demand by around 30% compared to a facility that cannot
accommodate these needs. Respondents noted:
What was really important to me was the quality of care. My mother was
introduced to a range of activities including painting with weekly workshops with a
trained artist along with visiting musicians, games, activities and outings. This all
took place in a group of 8-10 allowing lots of time for individual attention. The
staff were incredibly warm and caring and gave full attention to each individual.
Such individual attention allowed me as a carer to feel fully supported and to be
able to relax and leave the facility knowing that she was in such good care.
I would like to see staff that are sensitive to the individual person and their needs,
and take into account the client's cultural and professional background.
Respondents highly value staff that are specialised in dementia care beyond a minimum
standard required by law. Given the trade-offs that may have to be made in other areas of a
residential facility, a facility that employs staff specialised in providing dementia care will
have around 46% more demand than a facility that has staff trained to a minimum standard.
In fact, this is the third most highly valued level of care, which is not surprising given the
specialised needs of people with dementia in residential care facilities. It may also be in
response to the inability of some respondents to find residential care facilities that provide
staff with specialised training in dementia. Respondents noted:
I feel people caring for dementia patients have to have special qualities of
patience and compassion and even then need quality backup from trained
personnel at all times.
The most important thing is to be in care that specialises in dementia care, if care
is good then sometimes things like travel time and private facilities can be
overlooked.
It is important to me that staff communicate with the client on their level and keep
them stimulated. For this to happen, staff need to specialise in dementia care.
Open comments from the survey suggest that respondents also value a stable workforce
within a care facility to ensure continuity in care, and they also value a greater number of
staff per resident. One respondent noted:
83
Making choices: future dementia care
The 'high-care' cottage had no staff trained in 'dementia care', and no appropriate
activities. Once a resident becomes chair-bound they miss all the outings too. By
the time Dad died, in March 08, only one person per-shift had any nursing
training at all and very few staff had been in the facility longer than Dad had (only
3 years). Well-meaning care is no substitute for care by trained, experienced
staff. Trained nursing staff are essential in a nursing home, and deserve to be
paid much more than the incompetent managers who know nothing about caring
for people.
In addition, NCC members believe people providing formal care to someone with dementia
must have special personal qualities that cannot be obtained through training alone.
Consequently, they believe more money should be invested in providing good working
conditions to attract these types of people into formal dementia care.
The capacity to accommodate all stages of dementia is also valued by respondents. A facility
that can accommodate a person with dementia from early and moderate stages to late
stages of dementia, thereby negating the need for moving a resident as the condition
advances, will have around 25% more demand than a facility that can only accommodate
early and moderate stages of dementia. However, respondents did not place as much value
on the capacity to accommodate a person across all stages of dementia compared to other
residential care attributes, such as private facilities, specialised skills, and a short travelling
distance. This may be because a large proportion of respondents have used, or expect to
use, residential care when the person with dementia enters the advanced stage of the
condition when only high care is required. Respondents noted:
My mother was with me until very recently and I find the care is essential - but
moving her would create great confusion.
I would like to see those with only early and moderate stages of dementia
together as I think it can be disturbing to those with early dementia to live daily
with those who have advanced dementia.
Flexibility in visiting hours is valued by respondents, although results suggest respondents
would prefer some restrictions placed on visiting hours (that is, too much flexibility in visiting
hours may be a bad thing). For example, a residential care facility that has opening hours
between 7am and 10pm will have around 18% more demand than a residential care facility
that only allows visiting hours between 8am and 11am and 5pm and 8pm. This suggests that
respondents value the additional time allowed for visits between the hours of 7am and 10pm,
and that this period covers the likely visiting period demanded by most respondents.
However, when comparing the increase in demand for a facility that has more flexible hours
than 7am and 10pm, the demand for these types of facilities decreases. For example, there
is an increase in demand of around 9% for a facility that is fully flexible where family and
friends cannot stay overnight, and an increase in demand of around 14% for a facility that is
fully flexible where family and friends can stay overnight.
Although respondents prefer a facility that allows family and friends to stay over if visiting
hours are fully flexible, the greater value placed on a facility that has visiting hours between
7am and 10pm suggests respondents prefer a more routine visiting time schedule. One
reason may be that respondents want a more structured lifestyle for the person with
dementia in a residential care facility so that others (partners or siblings, for example) cannot
disturb the routine of the person in the residential care facility. One respondent noted:
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Making choices: future dementia care
I believe that staff need to work closely with carers so that they do not reinvent
the wheel in developing strategies to work with the client. For this to happen, the
facility needs to be transparent and have extended visiting hours.
The need for flexible visiting times is important due to the times most appropriate
for my wife's enjoyment.
As expected, the greater the bond required for a residential care facility, the less demand for
that facility. Table 3–18 shows a residential care facility that requires a bond of $300,000 will
have around 8% more demand than a facility that has a bond of $400,000. However, this is
not significantly different from zero, which means respondents do not believe there is a large
difference between these two bond amounts. One reason for this is that some respondents
may not be able to afford a $300,000 or a $400,000 bond and therefore place the same
value on both. Several respondents commented within the survey that they would have
difficulty paying the bonds presented within the experiment. This is despite the bond levels
being developed in consultation with the NCC and reflecting the large differences in bonds
across Australia and across urban environments (for example, city residential care facilities
typically require higher bonds than rural facilities).
A $200,000 bond will result in an increase in demand for a facility of around 20% compared
to a facility that requires a bond of $400,000. A bond of $100,000 is also more valued than a
bond of $400,000 and will result in an increase in demand of around 13%. However, the
lower expected increase in demand for a $100,000 bond compared to a $200,000 bond
suggests that respondents would rather pay a bond of $200,000 than $100,000. This may be
the case if respondents are attaching some quality of care attribute to the $200,000 bond
within the experiment that is not observed. For example, if respondents believe that a
residential care facility requiring a $200,000 bond will provide better care than a residential
facility that requires a $100,000 bond, then this result would make sense. However using a
Wald test suggests there is no significant difference between the two coefficients attached to
these bond levels. This result seems plausible considering both amounts would typically
require a person to sell their home or an asset of similar value in order to finance the bond.
There were many respondent comments relating to the prohibitive cost of accommodation
bonds. Some of these include:
I was surprised that there is little or no provision for those dementia clients who
have little or no financial backing to make a bond payment. Perhaps larger per
day payments with little or minimal bond payments could be a good suggestion.
Dementia sufferers have no choice in the matter of their disease. Their financial
situation should however not prevent them from having good care when the need
arises.
…if it hadn't been for the introduction of the accommodation bond we would have
put our father into a hostel many years ago. We've heard all the arguments on
why the bonds needed to be introduced but for us it was not an option for my
siblings. And yes, you do get most of the accommodation money back but this is
minus interest and/or capital gain which when divided among several siblings will
not amount to much.
I think there should be more places available to people with dementia who don't
have the funds to pay the money bond.
85
Making choices: future dementia care
I had not realised how expensive it would be to have full care for my husband
and realise that if there was a $400,000 bond and a daily charge of even as little
as $30 it would be impossible for me to put him in full time care.
Ideal would also be if the person's pension would be enough to cover the care. In
our position the bond and daily fees would have been too much as my father only
received a little overseas pension and was not eligible for any Australian pension.
Ranking levels of residential care from most important to least important
The impact on demand for each residential care attribute and a complete ranking of levels
associated with residential care attributes from most important to least important are shown
in Figure 3-8.
FIGURE 3-8: RANKING OF RESIDENTIAL CARE ATTRIBUTES
Private facilities - Room, bathroom, outdoor
Private facilities - Room and bathroom
Skills - Specialised in providing dementia care
Cultural and recreational - Individual basis
Distance - 10 minutes
Capacity - Can accommodate all stages of dementia
Private facilities - Room only
Bond - $200,000
Distance - 30 minutes
Cultural and recreational - Group basis
Visiting hours - 7am to 10pm
Distance - 60 minutes
Visitng hours - Fully flexible, can stay overnight
Bond - $100,000
Cultural and recreational - Special occassions
Visitng hours - Fully flexible but cannot stay overnight
Bond - $300,000
0
10
20
30
40
50
60
Impact on probability (% change)
Figure 3-8 shows that the most valued attributes within a residential care facility are those
that focus on the person with dementia as an independent person with an individual
personality and individual needs and does not try to fit that person into a ‘dementia mould’.
For example, a facility that can provide a private room, private bathroom, and private outdoor
area was most highly ranked, as this has the greatest impact on the probability of choosing a
hypothetical residential care option. A residential care facility that can provide a private room
and private bathroom but a common outdoor area is ranked second. Not surprisingly from
respondent comments, a facility with staff specialised in providing dementia care is ranked
86
Making choices: future dementia care
third, while a facility with the capacity to accommodate cultural and recreational needs on an
individual basis is fourth. A facility that is 10 minutes away from the respondent’s home is
ranked fifth.
Table 3–19 shows the relative importance of levels and attributes to respondents. For
example, a facility with a private room, bathroom, and outdoor area (represented by A in the
table) is valued around the same as one which offers a private room and bathroom only
(represented by B in the table), and around 1.2 times more than a facility with staff
specialised in dementia care (represented by C in the table). These relative values were
calculated by dividing the impact on probability for the former (53.0%) by the impact on
probability from the latter two levels (51.1% and 45.7% respectively). However the results
presented in Table 3–19 for those attribute levels that were not found to have a significant
impact on demand (for example, paying a $300,000 bond compared to paying a $400,000
bond) must be interpreted with caution.
87
Making choices: future dementia care
TABLE 3–19: RELATIVE VALUE OF LEVELS ATTACHED TO RESIDENTIAL CARE ATTRIBUTES
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
A
B
C
D
E
F
G
H
I
J
K
L
M
N
O
P
Q
1.0
1.0
1.2
1.8
2.1
2.1
2.6
2.7
2.8
3.0
3.0
3.5
3.9
4.0
4.2
5.9
6.4
.
1.0
1.1
1.7
2.0
2.0
2.6
2.6
2.8
2.9
2.9
3.3
3.8
3.9
4.1
5.7
6.2
.
.
1.0
1.5
1.8
1.8
2.3
2.3
2.5
2.6
2.6
3.0
3.4
3.5
3.7
5.1
5.5
.
.
.
1.0
1.2
1.2
1.5
1.5
1.6
1.7
1.7
2.0
2.2
2.3
2.4
3.4
3.6
.
.
.
.
1.0
1.0
1.3
1.3
1.4
1.4
1.4
1.7
1.9
1.9
2.0
2.8
3.1
.
.
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.
.
1.0
1.3
1.3
1.4
1.4
1.4
1.7
1.9
1.9
2.0
2.8
3.1
.
.
.
.
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.
1.0
1.0
1.1
1.1
1.1
1.3
1.5
1.5
1.6
2.2
2.4
.
.
.
.
.
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.
1.0
1.1
1.1
1.1
1.3
1.5
1.5
1.6
2.2
2.4
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.
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.
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1.0
1.0
1.1
1.2
1.4
1.4
1.5
2.1
2.2
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.
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.
1.0
1.0
1.2
1.3
1.4
1.4
2.0
2.2
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1.0
1.2
1.3
1.3
1.4
2.0
2.1
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1.0
1.1
1.2
1.2
1.7
1.8
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1.0
1.0
1.1
1.5
1.6
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1.0
1.1
1.5
1.6
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1.0
1.4
1.5
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1.0
1.1
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.
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.
.
1.0
A = Private facilities - Room, bathroom, outdoor
B = Private facilities - Room and bathroom
C = Skills - Specialised in providing dementia care
D = Cultural and recreational - Individual basis
E = Distance - 10 minutes
F = Capacity - Can accommodate all stages of dementia
G = Private facilities - Room only
H = Bond - $200,000
I = Distance - 30 minutes
J = Cultural and recreational - Group basis
K = Visiting hours - 7am to 10pm
L = Distance - 60 minutes
M = Visiting hours - Fully flexible, can stay overnight
N = Bond - $100,000
O = Cultural and recreational - Special occasions
P = Visiting hours - Fully flexible but cannot stay overnight
Q = Bond - $300,000
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Making choices: future dementia care
3.4
MODELLING GAPS IN DEMENTIA CARE IN FUTURE
An economic model was built in Excel 2007 to examine the impact of three scenarios on
potential gaps in the future supply of dementia care from 2008 to 2029. The model reports
separately on informal care (alone), HACC, CACP, EACH (including EACH-D) and high and
low care provided in residential facilities.
The model has two ‘modules’. The first module estimates the demand for different types of
care over time and the second estimates the supply of each different type of care over time.
The modules are discussed next, followed by the scenarios and the modelling results.
3.4.1
ESTIMATING FUTURE DEMAND FOR DIFFERENT TYPES OF CARE
The total demand for dementia care services is derived from the prevalence of dementia and
the severity of the condition. The greater number of people with dementia, the greater demand
for dementia care services. Also, an increase in severity (for example, if people with dementia
start to live longer at stages where a high level of care is required) means the total demand for
dementia care will increase, even if prevalence remained constant.
The total amount of dementia care used in the future, whether it is informal or formal care, was
calculated by forecasting the prevalence of dementia. This was done by multiplying the current
proportion of people with dementia (by five year age cohort and gender) by population
projections undertaken by Access Economics.
As outlined in Section 3.2.1, determining the demand for alternative types of dementia care is
less clear cut. Broadly speaking, demand for alternative types of care will be impacted by:
types of care available to the person with dementia;
characteristics of the person providing informal care (if available); and
needs and preferences of the person with dementia.
As it is problematic to determine the future choice between informal and formal care, it was
assumed in the base case that the total demand for dementia care was split into informal care,
formal community care, and residential care using the amount of hours within each type of
care being used by people with dementia in 2008. These data were sourced from the survey
undertaken by Access Economics as part of the choice modelling exercise, and publicly
available data from a variety of sources outlined in Chapter 2 of this report.
Demand parameters are summarised in Table 3–20. The derivation of the number of
dementia clients receiving each type of care is explained in detail in Chapter 2 (Sections 2.2
and 2.3). Notably:
the rate at which HACC services are demanded by people with dementia falls with age
(in part because age is a proxy for severity);
the rate at which CACP services are demanded remains relatively constant with age
except is significantly lower for those aged 95 or more years;
demand for EACH and EACH-D does not really vary with age;
demand for care in RAC facilities rises with age.
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Making choices: future dementia care
TABLE 3–20: NUMBER OF PEOPLE WITH DEMENTIA RECEIVING CARE, 2008
Number dementia
clients(a)
% receiving the % with dementia
service (b)
using the service
HACC
<65
65-74
75-84
85+
Total
10,334
7,913
14,662
8,255
41,165
25%
19%
36%
20%
100%
89%
23%
17%
9%
19%
CACP
<65
65-74
75-84
85-94
95+
Total
416
1,079
3,252
2,413
131
7,291
6%
15%
45%
33%
2%
100%
3.6%
3.1%
3.8%
3.0%
1.0%
3.2%
EACH
<65
65-74
75-84
85-94
95+
Total
124
140
435
591
78
1,368
9%
10%
32%
43%
6%
100%
1.1%
0.4%
0.5%
0.7%
0.6%
0.6%
EACH-D
<65
65-74
75-84
85-94
95+
Total
182
205
636
864
114
2,000
9%
10%
32%
43%
6%
100%
1.6%
0.6%
0.7%
1.1%
0.9%
0.9%
RAC Low care
<65
65-74
75-84
85+
Total
318
1,620
5,055
8,068
15,061
2%
11%
34%
54%
100%
3%
5%
6%
9%
7%
RAC high care
<65
65-74
75-84
85+
Total
1,050
4,461
22,595
47,001
75,107
1%
6%
30%
63%
100%
9%
13%
26%
50%
33%
(a) From Section 2.2 and 2.3. (b) HACC sourced from AIHW (2007) Older Australians at a glance Table 36.1.
CACP and EACH/EACH-D sourced from AIHW (2007) Table 5.47 and Table 5.6.
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Making choices: future dementia care
It is important to note that these forecasts of dementia care are not unconstrained demand,
since they are based on usage. Where there are supply constraints, demand may actually be
higher than usage. For example, a person with dementia may demand more informal care
than they are currently receiving, especially considering the person with dementia does not
pay for the informal care. However supply constraints of the family carer may mean the person
with dementia does not receive the total amount of care they would want (for free); possibly
only some part of their demand is met to a point which is deemed sufficient, or possible, by the
family carer. As such this might be more of a proxy measure of ‘need’ to retain a benchmark
(current) care level.
MODELLED TRENDS IN THE SUPPLY OF DEMENTIA CARE
3.4.2
Informal care
The starting point for supply of informal care was the number of people with dementia
receiving each type of care (see Table 2–23). This was multiplied by the number of informal
care hours received per person in receipt of each care type, and the proportion of people in
receipt of each type with an informal carer. Parameters were as follows:
The hours of care provided per head by carers were derived from the survey results —
estimated separately for informal care supplied on its own, informal care supplied in
conjunction with community care, and informal care supplied together with care provided
in residential aged care facilities.
The proportion of people with dementia receiving community care who also had a family
carer were derived from AIHW (2004a) for HACC, AIHW (2004b) for CACP and AIHW
(2007a) for EACH and EACH-D — (52% of people with dementia receiving HACC had a
family carer, 57% of those receiving CACP, and 97% of those receiving EACH and
EACH-D).
It was assumed that the proportion of people with dementia in RAC facilities who also
had a family carer was the same as for CACP.
The hours supplied in 2008 were then divided by the population to obtain the rate at which
dementia care was supplied per 1000 people. The age/gender breakdown for family carers
was based on ABS SDAC 2003 (Table 3–21). These age/gender rates were assumed to
remain constant over time, and were multiplied by population projections to estimate the total
amount of informal care available for people with dementia each year.
TABLE 3–21: PRIMARY AND NON-PRIMARY CARERS BY AGE, AND POPULATION GROWTH IN EACH
AGE GROUP 2008 TO 2029
Age of carers
Age
15-24
25-34
35-44
45-54
55-64
65+
Total
Males
4%
6%
9%
10%
9%
6%
45%
Population growth 2008 to 2029
Females
Males
4%
8%
13%
14%
11%
6%
55%
12%
23%
25%
15%
28%
100%
Females
11%
20%
18%
9%
27%
88%
Source: ABS SDAC 2003, AE DEM.
HACC, CACP and EACH
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Making choices: future dementia care
The starting point for HACC, CACP and EACH was the FTEs supplied in 2008 derived in
Chapter 2 and summarised in Table 2–23. To project FTEs over time, it was assumed that the
workforce increased at the same rate per year as the population aged 70 years or over. This
is consistent with Australian Government planning for the provision of RAC, EACH and CACP,
which is based on set ratios of care per person aged 70 years or more (see for example
SCRGSP, 2008).
RAC — high and low
The RAC workforce was assumed to be a combination of personal carers, other staff not
providing direct care and nurses. Personal carers and non-direct care staff were assumed to
increase each year at the same rate as the population aged 70 years or over (as outlined
above).
The supply of nurses in residential aged care facilities was based on data from a number of
sources, including AIHW (2008) and unpublished modelling by Access Economics for the
Australian Government of the demand for nurses in aged care. In addition, it was assumed
that the supply of nursing graduates continued to increase at the same average rate per
annum occurring between 2005 and 2007, but net migration remained the same over time as
in 2005. Nurses constituted a greater proportion of high care RAC staff than low care RAC
staff based on data for 2005, showing that nurses constituted 12% of the low care RAC
workforce and 41% of the high care RAC workforce (ACIL Tasman, 2003a).
3.4.3
BASE CASE PROJECTIONS
In the base case, demand for informal care far outstrips supply (Figure 3-9) as the annual
growth in the number of people with dementia requiring informal care (4%) is faster than the
rate of growth in the number of carers (1%) (Table 3–22).
92
Making choices: future dementia care
FIGURE 3-9: BASE CASE — PROJECTIONS OF DEMAND FOR AND SUPPLY OF INFORMAL CARE FOR
PEOPLE WITH DEMENTIA (HOURS ‘000)
450,000
400,000
Hours of informal care per year ('000)
350,000
Demand
Supply
300,000
250,000
200,000
150,000
100,000
50,000
0
2008 2009
2010 2011
2012 2013
2014 2015
2016 2017
2018 2019
2020 2021
2022 2023
2024 2025
2026 2027
2028 2029
Year
Source: Access Economics model built for this project.
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Making choices: future dementia care
Similarly, demand for high care RAC outstrips supply as the population with dementia ages,
driven in part by a shortage of nurses (Figure 3-10).
FIGURE 3-10: BASE CASE — PROJECTIONS OF DEMAND FOR AND SUPPLY OF HIGH CARE RAC
250,000
200,000
Hours of care per year ('000)
Demand
Supply
150,000
100,000
50,000
0
2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029
Year
Source: Access Economics model built for this project.
Gaps between demand and supply for all types of care are summarised in Table 3–22 and
depicted graphically in Figure 3-11. As the population ages (a proxy for the severity of
dementia), demand for high care community assistance (EACH, EACH-D) and residential
aged care increases at a faster rate than supply. In particular, a growing shortage of nurses
hampers growth in the capacity of residential aged care. This affects high care RAC facilities
especially, which have almost double the proportion of nurses than low care RAC facilities.
Conversely, as modelled there is an excess supply of HACC and CACP.
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Making choices: future dementia care
TABLE 3–22: BASE CASE — GAP BETWEEN DEMAND AND SUPPLY AND AVERAGE GROWTH PER
YEAR
Informal care hours (total ‘000) Excess demand
Hours per pwd per week Excess demand
Average growth per year in demand
Average growth per year in supply
HACC care hours (‘000) Excess supply
Hours per pwd per week Excess supply
Average growth per year in demand
Average growth per year in supply
CACP care hours (‘000) Excess supply
Hours per pwd per week Excess supply
Average growth per year in demand
Average growth per year in supply
EACH and EACH-D care hours (‘000) Excess demand
Hours per pwd per week Excess demand
Average growth per year in demand
Average growth per year in supply
RAC low care (excess demand for carers, FTEs)
Hours per pwd per week Excess demand
Average growth per year in demand
Average growth per year in supply
RAC high care (excess demand for carers, FTEs)
Hours per pwd per week Excess demand
Average growth per year in demand
Average growth per year in supply
2008
2029
0
-161,911
-6.58
4%
1%
142
0.01
3%
3%
410
0.02
3%
3%
-192
-0.01
4%
3%
-9,003
-0.37
4%
3%
-92,499
-3.76
4%
2%
0
0
0
0
0
Source: Access Economics model built for this project.
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Making choices: future dementia care
FIGURE 3-11: BASE CASE — PROJECTIONS OF THE GAP BETWEEN DEMAND AND SUPPLY — BY
CARE TYPE (HOURS PER PWD PER WEEK)
1.0
Hours of care per pwd per week
0.0
-1.0
-2.0
Informal care
-3.0
HACC
CACP
-4.0
EACH and EACH D
RAC Low
RAC High
-5.0
-6.0
-7.0
2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029
Year
Source: Access Economics model built for this project.
3.4.4
SCENARIOS
Three scenarios were modelled:
an increase in the proportion of people with dementia living in the community rather than
RAC facilities;
an increase in the participation of women in the workforce; and
an increase in the proportion of people living alone.
Scenario A — a continued increase in the proportion of people with dementia living in
the community
For the purposes of modelling, the increase in the proportion of people with dementia living in
the community was set at 1.1% per year based on Section 2.4.37 The outcome is a switch
from high care RAC facilities into EACH-D, and from low care RAC facilities into CACP (with
consequent increases in the need for informal care). The results for this scenario are
summarised in Table 3–23. There is a fall in the excess supply of CACP, an increase in
excess demand for informal care and EACH and EACH-D (in fact expansion in demand for
EACH and EACH-D increases average growth in demand per year from 4% in the base case
to 5% in the scenario) — and finally, there is a reduction in excess demand for care in RAC
facilities.
37
Doyle et al (2005) estimated 57% of people with dementia lived in the community in 2005, and Access
Economics estimated that 60.3% of people with dementia lived in the community in 2008.
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Making choices: future dementia care
Scenario B — increase in female labour force participation
IGR2 (Costello, 2007) projected that participation rates are likely to increase for women of all
ages, and by 2046-47 women participating in the workforce will be almost evenly distributed
between full-time and part-time work. The rate at which the participation in the labour force of
women aged 15+ was assumed to increase in the model was based on ABS (2008) — the rate
of increase experienced by females between September 2005 and September 2008. It was
assumed that the increase in labour force participation would lead to a reduction in the supply
of hours of informal care consistent with half the change in labour force participation (reflecting
that some of the change would be absorbed by women now at work). A consequent fall in
demand for community care was also modelled since community care and informal care are
complements for a high proportion of the population with dementia, with the need for RAC
services rising as a result.
The results are summarised in Table 3–23.
Scenario C — increase in the proportion of people living alone
Many of those caring for people with dementia are co-residents. The ABS (2004 household
and family projections Catalogue 3236.0) projected a rise in the proportion of people living
alone. The ABS projections by age were used to model a resulting switch in demand from
CACP to low care RAC, and EACH to high care RAC (and consequent effects on
requirements for informal care).
The results are summarised in Table 3–23.
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Making choices: future dementia care
TABLE 3–23: SCENARIO IMPACTS ON CARE HOURS DEMANDED AND SUPPLIED(A)
Base
case
Scenario A:
higher %
pwd in
community
Scenario B:
higher %
female
labour
participation
Scenario C:
higher %
people
living alone
2008
2029
2029
2029
2029
Informal care hours (‘000)
Hours per pwd per week
Av growth per year
demand
Av growth per year supply
0
-161,911
-6.58
-164,381
-6.68
-167,669
-6.82
-161,911
-6.58
4%
1%
4%
1%
4%
1%
4%
1%
HACC care hours (‘000)
Hours per pwd per week
FTEs(b)
Av growth per year
demand
Av growth per year supply
9
142
0.01
82
142
0.01
82
596
0.02
347
142
0.01
82
3%
3%
3%
3%
2%
3%
3%
3%
CACP care hours (‘000)
Hours per pwd per week
FTEs(b)
Av growth per year
demand
Av growth per year supply
0
410
0.02
239
166
0.01
96
510
0.02
297
432
0.02
251
3%
3%
3%
3%
3%
3%
3%
3%
-192
-0.01
-112
-1,626
-0.07
-946
-180
-0.01
-105
-175
-0.01
-102
4%
3%
5%
3%
4%
3%
4%
3%
-9,003
-0.37
-5,242
-8,520
-0.35
-4,960
-9,675
-0.39
-5,633
-9.046
-0.37
-5,267
4%
3%
4%
3%
4%
3%
4%
3%
-92,499
-3.76
-53,854
-89,758
-3.65
-52,258
-96,430
-3.92
-56,472
-92,533
-3.76
-53,873
4%
2%
4%
2%
4%
2%
4%
2%
EACH/EACH-D care hours
(‘000)
Hours per pwd per week
FTEs(b)
Av growth per year
demand
Av growth per year supply
0
RAC low care hours (‘000)
Hours per pwd per week
FTEs(b)
Av growth per year
demand
Av growth per year supply
0
RAC high care hours (‘000)
Hours per pwd per week
FTEs(b)
Av growth per year
demand
Av growth per year supply
0
(a) Note that a negative number signifies excess demand and a positive number signifies excess supply.
(b) FTEs calculated based on 38 hour week and 45.2 week year (see Chapter 2).
Source: Access Economics model built for this project.
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Making choices: future dementia care
3.5
CONCLUSIONS FROM THE MODELLING
Demographic change alone (population ageing) will lead to shortages in the supply of key
types of care for people with dementia — in particular — shortages of informal care and high
care RAC, with lesser shortages for EACH/EACH-D and low care RAC. As modelled, excess
supply of HACC and CACP may emerge over time. Notably, since informal care and
community care have complementary characteristics, a shortage of informal care exacerbates
the demand pressure on RAC facilities. If trends in other important drivers in the demand and
supply of care for people with dementia continue — that is, increases in the desire of women
to participate in the labour force and increases in the proportion of people living alone, the
shortage in RAC will become even worse. An increase in demand for community based care
in preference to RAC would ameliorate the shortage in RAC (although not eliminate it), but at
the same time would further exacerbate the shortage in informal care and EACH/EACH-D.
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Making choices: future dementia care
4. ISSUES AND CHALLENGES
This chapter reviews issues and challenges associated with the projections of the demand and
supply of different types of care services over time. First, the implications for ageing in place
are revisited, including consumer preferences, cost effectiveness and issues with the ACAT
recommendation process. Second, financing of care options is discussed, including capital
costs, equity (capacity to pay) factors, and alternative financing options. Next, in looking at
future workplace options, productivity enhancements and the adequacy of workforce training
pathways are explored, as well as respite and support options and potential workplace
initiatives. Finally, the special needs of people with dementia under 65, with severe
behavioural and psychological symptoms, Indigenous Australians, culturally and linguistically
diverse (CALD) Australians and people living outside metropolitan areas are reviewed, as
these groups all risk disadvantage if formal dementia care services are not adaptable and able
to provide a diverse range of care.
4.1
REVISITING AGEING IN PLACE
Ageing in place means the capacity for any individual to safely, independently and comfortably
continue to live in their ‘home’ (which may be in the community or in a nursing home) with
minimum disruption, regardless of age, financial circumstance or physical limitation.
In the community, the array of services from low-need (HACC) to very high need (eg, EACHD) are designed to enable people to remain in their own homes for as long as possible without
the compulsion to move.
In many RAC facilities, it is possible to receive care at low-level or high-level in the same place
of residence, avoiding the need to move as a result of changing care needs. An ageing in
place RAC policy is particularly beneficial for couples planning for a move from the family
home as it may enable them to remain together even if their care needs significantly change
over time. It also means people can maintain the relationships they have developed with staff
and residents. The staff will be qualified and trained to support older people needing varying
styles of care, including nursing, if needed. Ageing in place homes are designed to cater for
people with a variety of care needs, although there may still be a need for supplementary
services (including a potential role for Dementia Behaviour Management Advisory Services) –
such as when behaviours of concern associated with dementia develop that cannot be
managed, or if acute hospital care is needed.
4.1.1
CONSUMER PREFERENCES AND QUALITY OF LIFE
The literature review in Section 1.3, Section 3.2.2 on consumer-directed care strategies and
the survey findings suggest that people with dementia and their families and carers show
preferences for flexibility in service provision, as well as informed choice between what
services they are able to access at different times and locations. While many people prefer to
receive care in the community for as long as possible, there may come a time or set of
circumstances when residential care is preferred by many, for the wellbeing of the person with
dementia, their carer or both. Ideally, the combination of services available to be accessed
should maximise quality of life for the person with dementia and their carer, within budget
constraints, and enable people’s preferences to be met.
The survey suggested that, currently, more people would prefer to be able to access formal
services (recall the 42% of respondents who they were in some way compelled to undertake
care in Section 3.3.2). It appears from the modelling that the preference is for more residential
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Making choices: future dementia care
care services rather than more community care services, since the largest gaps are evident
between demand and supply in RAC. Scenario A showed that, if community care could be
made more desirable – eg, through better packages of options in line with consumer
preferences, this would ameliorate the shortage in RAC (although not eliminate it), but
community care services would need to be expanded at the high-care end of the spectrum.
4.1.2
COST EFFECTIVENESS
While consumers may have a preference for more RAC services or better options for formal
community care services, Chapter 2 showed that these are more expensive options in hourly
rate terms. Although not controlled for severity of the person cared for, on average, informal
care costs (in opportunity cost terms) $4.33 per hour relative to the formal cost of community
care estimated at $27.15 per hour. Moreover, in RAC facilities, costs per hour of care average
somewhere between $27.19 per hour (low estimate) and $37.81 per hour (high estimate). The
scope for potential productivity improvements in RAC and formal care service delivery are
discussed further on in Section 4.3.2.
4.1.3
AGED CARE ASSESSMENT TEAM (ACAT) RECOMMENDATION PROCESS
Before moving on to the financing implications of these findings, a final point that has been
highlighted in the survey responses and in the literature is the need for review of the ACAT
recommendation process and its effectiveness.
Some survey comments reflected a lack of community awareness regarding how the process
works:
The main challenge in accessing dementia care was that it seemed to rely to a
very high degree on the knowledge of carers, and their abilities to successfully
navigate bureaucracy. For example, my parents learnt about the role of ACAT
assessments from me; no medical or other community worker drew it to their
attention. I only knew about ACAT because, some years earlier, I'd been a
legislative drafter and had worked on the 1997 aged care legislation, which
established the role of ACAT assessments in accessing care and support. This
kind of randomness is unacceptable. Primary health care workers need to be far
more aware of the kinds of gatekeepers and services that dementia sufferers, and
their carers/supporters, can and should access.
Other comments reflected the need for additional assistance to families surrounding the ACAT
recommendation process, particularly for less severe dementia care:
The critical issue of when the family member with dementia should be assessed
and go to assisted accommodation is one that all families face. I believe that more
assistance should be given in this area particularly during and following ACAT
assessment where low level care is recommended.
A number of comments reflected dissatisfaction with the ACAT decision resulting in an inability
to access the type of care desired.
Looking at the origins of the problem my parent's GP should have picked this up
and contacted me. They lived interstate - I had to bring them back to Sydney where I live. That was a major project and the advice I was given by specialists at
the time (ACAT etc) was wide of the mark. As this becomes more common with
aging population I think there needs to be a general awareness campaign so that
early stage signs can be acted upon rather than when deterioration is too late. I
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Making choices: future dementia care
think the specialists tend to worry about the worst cases only....the community
should be trained to spot the emerging cases.
4.2
FINANCING
With the growing prevalence of dementia and the accompanying demand for dementia care in
both residential and community care settings, come large costs.
This section identifies the capital requirements for providing aged care to people with dementia
in Australia, considers the equity implications (of potential changes to subsidisation of aged
care) and discusses alternative financing models that may help finance the growing capital
and care requirements.
The take home message in relation to financing is that governments and communities need to
plan for the increasing demands for residential care, and also for growing dementia community
care services.
4.2.1
ACCOMMODATION AND CAPITAL
This section summarises the capital infrastructure associated with the various models of
dementia care. In light of the large projected expansion in the number of people with dementia
requiring care, planning is required to achieve appropriate levels of infrastructure.
Residential care
At June 2007, there were 2,873 residential care services in Australia and 167,070 operational
places (beds) in those services. The average number of operational places per service was
58.2, and the average occupancy rate was 94.5% meaning there was an average of
55 residents per service (SCRGSP, 2008).
In recent years, the provision of aged care services has been based on planning ratios defined
in terms of population aged 70+ (ie, X residential and community care places per 1,000
population aged 70 years and above). Demographic ageing implies that the average age of
this cohort is increasing and therefore the share of this population with dementia is expected to
increase. This implies that planning ratios will need to increase or be redefined (e.g. related to
an older population cohort).
The increased demand for residential care was discussed in Sections 2.2 and 3.4 in relation to
the increased demand for dementia care workers. Higher demand for residential care will also
require additional, and/or larger, residential care facilities. While the precise level of demand
for new facilities will be determined by preferences for community versus residential care, the
costs associated with providing appropriate facilities will be substantial and government will
need to plan for how these capital investments will be financed.
In addition to ensuring there are a sufficient number of facilities and beds for the growing
population of people with dementia, it will be important to focus on providing appropriately
designed facilities (e.g. that limit the number of people within a unit, and that provide secure
areas for people with dementia to be able to wander).
Respite care
Respite care is generally provided either in the home or in residential care facilities, as well as
in day centres and other facilities.
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It is important to account for the demand for respite care for people with dementia in the
planning of residential care facilities. If there are to be changes in the mix of dementia care
that is provided in community versus residential settings, then today’s level of provision of
places/beds for respite care may not be appropriate. Any increase in the share of dementia
care provided in the community will increase the demand for respite care.
Community care
As community-based dementia care involves the provision of care for people while they
remain in their homes, the associated capital requirements are less than those for residential
care. This is not to say there are no capital requirements associated with community care. To
enable people to remain in their homes, home modifications and specialised equipment are
often required.
Planning around the provision of community-based dementia care must address the need for
home modifications and equipment.
4.2.2
EQUITY CONSIDERATIONS AND CONSUMER CAPACITY TO PAY
As the share of the Australian population receiving dementia care (either residential or
community based) increases, there will be increased focus on the question of who finances
the costs of providing this care. In the absence of major changes, government will not be able
to pay for all residential and community care. In particular, it will be important for those people
with the capacity to pay to do so, allowing the government to continue to provide a safety net
for those without the financial means to cover their dementia care costs.
4.2.2.1
THE CURRENT SYSTEM FOR FINANCING RESIDENTIAL AND COMMUNITY CARE
RESIDENTIAL CARE
There are multiple components to the fees charged to residents of Australian Government
subsidised residential aged care facilities.
Low level care
People who enter low level care, or an ‘Extra Service’ place38, can be charged an
Accommodation Bond. Accommodation bonds are essentially interest free loans from care
recipients to care providers, where the care providers may retain any interest earnings.
Residential care facilities may also withdraw $280 per month for the first five years. The funds
from accommodation bonds are directed towards improving capital (buildings) and services.
The amount of the bond is negotiated between the care recipient and the residential care
facility upon entry, but cannot leave the care recipient with assets of less than 2.5 times the
annual single basic age pension ($34,500 at 20 March 2008)39. Payments may be in a lump
sum or as a regular payment. The remainder of the bond must be returned to the resident or
the resident’s estate on discharge or death.
38
‘Extra Service’ places provide a significantly higher standard of accommodation services and food (eg, ‘hotel’
type services), for an additional fee to the resident.
39
There are some cases when a person’s home may not be an assessable asset. There are also provisions that
mean some assets that have been gifted away may still be assessable.
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High level care
Individuals entering a high level care place may be charged an Accommodation Charge if their
assets are greater than 2.5 times the annual single basic age pension. There are rules which
cap the daily accommodation charge based on the resident’s level of assets, as well as an
absolute cap on the daily charge.
High and low level care
A basic daily care fee may be charged of all aged care residents regardless of their assets,
and is intended to cover living expenses like meals, laundry, heating/cooling, and also nursing
or personal care. This fee may not exceed 85% of the annual single basic age pension.
The Accommodation supplement is payed to residential care facilities for residents who cannot
afford to pay their accommodation payments. The payment rate varies according to the level
of assets of the resident.
COMMUNITY CARE (CACP, HACC, EACH, EACHD)
Different fee structures exist for the various community care programs.
HACC – fees vary between types of service and across states and territories. A person
cannot be denied service on the grounds that they cannot afford the fees.
CACP – recipients can be asked to pay a fee that is capped at 17.5% of the maximum
basic rate of pension, and for people on higher incomes no more than 50% of any
income above the maximum pension rate.
EACH/EACH-D – service providers can charge fees based on the same rules as for
CACP.
4.2.3
ALTERNATIVE FINANCING OPTIONS
Reasons why the current financing model is not sustainable in the future
As reported in Section 1.1, demographic ageing will put growing pressure on the ability of
government to fund aged care to the degree it does currently. The current transfers of funds
from the young to the old (intergenerational monetary transfers) will become more demanding
as the proportion of people aged over 65 years grows, while the growth of the labour force
stagnates. These scenarios place the sustainability of the current aged care system in doubt.
In contrast, increases in the value of homes, an accumulation of household wealth through
superannuation and real growth in the economy have meant that people are better placed to
contribute to their own health and aged care over time. The success of superannuation in
provisioning for future retirement incomes augurs well for the ability of Australians to also
provision specifically for out of pocket health and aged care expenses expected later in life.
However, superannuation alone is unlikely to be used for aged care needs (many people who
access super at age 55 years have spent it by the time dementia care is needed 30 years
later).
For young people, saving money for needs a long way off in later life tends not to be a natural
priority. Market failure may also occur as the current system of aged care financing does not
provide strong disincentives to individuals drawing down their assets before they require aged
care.
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Making choices: future dementia care
There is a range of financing options, many of which have been canvassed by governments at
various times:
increases in the Medicare Levy;
a levy on superannuation payouts;
reverse mortgages;
bonds for high care;
means testing for high level community care (CACP and EACH/D); and
Healthy Ageing Savings Accounts.
Dedicated savings vehicle for aged care (Healthy Ageing Savings Accounts)
The rationale for dedicated savings accounts for aged care is analogous to that for
superannuation. With an ageing population coupled with a stagnating pool of taxpayers and
an intrinsic ‘market failure’ of people saving adequately to provision for later life (partly due to
moral hazard), it will become harder for governments to continue to fund the health and aged
care system in its current design.
Healthy Ageing Savings Accounts (HASAs) have the ability to complement private health
insurance just as superannuation complements life and income protection insurance. Both are
provisioning mechanisms providing for future expected expenditure streams (health and aged
care cf. retirement income), to reduce dependence on public finance (health and ageing
expenditure cf. pensions) and supplemented by true risk-pooling vehicles for insurable risks
(catastrophic, unpredictable health or income-displacing events). With careful design and use,
HASAs increase access to health care when older, when health needs are greater and when
incomes are lower and assets harder to redeem (eg, the family home).
Dedicated HASAs for aged care must be additional to superannuation since otherwise people
(who can afford to) have incentives to spend their retirement incomes on less essential goods
and services (eg, leisure, travel) and fall back on public safety nets rather than provisioning for
their needs. This moral hazard underpins the need for a parallel, complementary saving
mechanism.
The gradual introduction of HASAs across the Australian population on a level playing field
with superannuation (in terms of tax incentives) could utilise successful models from overseas.
Review of international experience with HASAs suggests the following lessons for Australia.
Accounts encourage efficiency. A case study of Discovery Health in South Africa
(AON, 2006) found that members consumed less health care when paying from their
savings but short term benefits was not at the expense of longer term costs as
consumers invested more in preventive care. Consumers also shopped around, which
had a positive impact on price control more generally.
Accounts also deliver better health outcomes, particularly if coupled with wellness
programs (eg, screening participation, health checks, vaccinations, activity/QUIT/healthy
eating and other lifestyle modification programs) and health rewards (flyer points etc) as
consumers take greater responsibility for their health. Better health outcomes may also
reflect more flexible expenditure options rather than traditional models – eg, capital
contributions to home air conditioning for preventing asthma rather than hospitalisation
for an attack.
Lower income groups take up accounts, potentially more attracted to saving for their
own needs rather than pooling risks through insurance. In the United States (US
Department of the Treasury, 2006), a third of accounts have been taken up by previously
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Making choices: future dementia care
uninsured people and 42% were people with incomes below the median (ie, higher takeup than PHI among the disadvantaged).
Incentivisation is necessary to overcome moral hazard in relation to saving; in New
Zealand the product failed due to a lack of tax-deductibility.
With voluntary accounts, average per capita contributions may be in the ballpark of
around A$1,000 per annum. Depending on design and rollout mechanisms, take-up
may reach around 10% of the population within four years and continue to grow
thereafter, in line with international experience.
HASAs ideally would be used accounts to provision for the more predictable financing needs
of healthy ageing (hospital services, residential and community aged care services, dementia
specific services), as well as out of pocket expenses, deductibles, preventive health and other
approved items. The existence of HASAs would lead to a more appropriate role for private
health insurance as a risk-pooling device, while retaining publicly financed safety nets for
services to the disadvantaged. Such a system would be budget positive for the Australian
Government, ensuring efficiency, equity and sustainability in long term health and aged care
financing.
4.3
WORKPLACE OPTIONS
4.3.1
INTRODUCTION
As discussed in Section 1.1, as the population ages and there are fewer people of working age
to each older person outside the workforce, productivity improvements and initiatives aimed at
increasing labour force participation rates at any given age are important.
From above, of 227,350 people with dementia in 2007, approximately 60% were living in
the community — 52,058 had community care (HACC, CACP or EACH/D) and another
84,100 or so had no formal care assistance. If all of those with dementia living in the
community had informal care (some with both formal and informal), there were approximately
136,158 people with dementia with family carers. SDAC and other data suggest that the
majority of these carers are women aged 45 to 64 years. Evidence suggests that the caring
activities of these women limit their participation in the labour force. According to TOCC
(2006):
one in four employees with caring responsibilities is likely to leave the workforce in future
because of the cost of care;
one in four employees with caring responsibilities has already reduced their hours of
work because of the cost of care;
of employees with caring responsibilities, 35% would increase their hours of work if care
was more affordable; and
the cost of care influenced the departure of 64% of employees with caring
responsibilities from the workforce.
In addition, carers may take jobs that do not make full use of their skills. TOCC (2007) found
that nearly half (44%) of the carers surveyed chose a role below their skill level because it
gives them the flexibility they need to balance work and caring responsibilities. Aside from
improving labour force participation rates, facilitating participation in paid work by family carers
is likely to (TOCC 2006):
reduce the cash economy and increase tax revenue through the increased declaration of
income paid to carers;
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Making choices: future dementia care
increase productivity;
increase superannuation for carers and others remaining in the workforce;
decrease employee turnover costs; and
improve the quality of life of carers.
Facilitating paid work by carers may relieve some of the financial burden of caring, but quality
of life is just as important. Caring can adversely affect mental and physical health and
wellbeing, leading to depression, interrupted sleep, inflated blood pressure and lack of
physical exercise. Alzheimer’s Australia (2007) previously made some key points about the
needs of dementia carers.
Carer respite is extremely important, as is community transport.
Carers also need assistance with early intervention, counselling and guidance, personal
care, day care and respite care.
Carers need assistance to negotiate the various levels of government programs
available (HACC, CACP and EACH) and what types of care and levels of service they
should expect from each one.
An accreditation or other quality system is as important for community care as it is for
RACF.
The productivity of the caring workforce (productivity is defined in Box 4-1) can be improved by
increasing the capital to labour ratio and improving the skills and knowledge of carers.
Box 4-1 What does carer productivity mean?
In this report, carer productivity refers to the effectiveness of the care provided per
unit cost of care. Both effectiveness and cost incorporate a range of dimensions.
In brief, ‘effectiveness’ refers to the quality of care provided to the person with
dementia, and ‘cost’ includes the emotional burden on the carer, as well as
individual or government financial outlays on provision of aged care.
4.3.2
INVESTMENTS IN CAPITAL
Some improvements in the productivity of carers in their caring role can be achieved by
access to equipment. Some equipment is relatively expensive (e.g. lifting equipment to assist
in personal care), but may nevertheless be cost effective if it reduces the amount of time each
carer spends caring per day and also reduces the rate at which carers are injured thus
improving their quality of life and health.
Other home modifications may be negligible in cost (for example, pieces of coloured cloth
strategically placed over door handles or gate or door locks to prevent the person with
dementia entering unsafe areas or wandering outside the perimeters of the domestic
property). These types of investments are also likely to be cost effective, reducing the amount
of time carers spend caring each year and improving their quality of life and health. However,
carers must be made aware of these types of modifications. Training and information are
therefore important.
An example of the impact of the purchase of capital equipment on improvements in dementia
care is in Box 4-3, where the purchase of a kitchen blender improved the appetites and thus
health of people with dementia.
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Making choices: future dementia care
4.3.3
ADEQUACY OF WORKFORCE TRAINING PATHWAYS
Managing the behaviours sometimes associated with dementia (e.g. wandering, sundowning
and forgetting to eat) requires training as well as specialist support. Other elements of care
specifically important for people with dementia identified by Alzheimer’s Australia are in Box
4-2.
Box 4-2 Elements of care particularly important for people with dementia
Continuity of care is particularly important for people with dementia and their
carers. Key workers are required who can be a constant point of support and who
can provide access to diversified community services that have the opportunity to
be familiar with the circumstances of the person with dementia and their families
and carers. To assist in smoothing care pathways, Alzheimer’s Australia has
developed a ‘This is Your Life’ book as a way of assisting visitors, and non-familial
carers (for example, respite carers) of people with dementia.
Successful care programs for people with dementia attempt to accommodate the
anxiety and restlessness associated with a failing short term memory through the
use of orientation programs including signs and directions, maintenance of
routines, diversional therapy (familiar music and movies, occupational therapy
aimed at past skills and hobbies, periods of reminiscing, art, craft and memory
games), and alarm systems.
People with dementia are frequently taking a range of medications, so training and
assistance for carers in overseeing and managing medications is also
important.
It is difficult to determine the complete array of funding and programs for training in dementia
specific care. Some relevant programs from previous Australian Government Budgets are in
Table 4–1, but funding from broader aged care education and training programs (including
workplace training) and from the education budget (for example, nursing degrees at
universities) also incorporate training in dementia care. State and territory governments also
contribute to training, for example through their contributions to the funding of HACC, through
the vocational education and training system and through work based training in hospitals.
TABLE 4–1: AUSTRALIAN GOVERNMENT BUDGETS — EXPENDITURE SPECIFICALLY FOR CARER
TRAINING (CURRENT PRICES $ MILLION)
2005-06
Carer information and support
Dementia training for carers
Dementia education and
support
Securing the future of aged
care for Australians –
community care workforce
development
(a)
4.1
2006-07
6.8
2007-08
7.0
2008-09
2009-10
1010-11
7.2
(a)
7.9
7.9
8.0
8.2
(a) The Health and Ageing Portfolio Budget papers simply stated ‘Continue funding’.
Sources: Australian Government Health and Ageing Portfolio Budget Papers for the years 2005-06 and 2007-08.
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Making choices: future dementia care
Formal carers
Workforce shortages and staff turnover increase the need for training, while at the same time,
increasing the costs to employers of educating staff. A number of sources have noted the
shortage of nurses in Australia, including high attrition rates in aged care. Hogan (2004) listed
causes including wage discrepancies between nursing staff in aged care and other sectors,
shortage of trained staff, negative image of aged care, budget-driven rather than care-driven
nursing, coping with palliative care and bereavement, dealing with abusive residents and
unpleasant work. The job vacancy rate for the health and community services sector generally
was one of the highest vacancy rates among all industries, and steadily increased, in the
period 2000–05 (ABS 2005b). HACC funded organisations have also introduced staff
retention strategies in recognition of their importance (Sloan and Barnett, 2006). In an
evaluation of dementia care and management in Victorian acute care settings, Foreman and
Gardner (2005) found a significant minority of acute care staff registered that caring for people
with dementia was unrewarding or difficult.
One means of improving staff satisfaction and retention is the development of structured
career pathways and associated training. In particular, advising staff on how to deal with the
dementia behaviours will improve their productivity and work satisfaction as well as the care of
those with dementia. In acute care settings, Foreman and Gardner (2005) found that the level
of reported job satisfaction in working with patients with dementia showed a clear increase
after dementia specific education programs had been implemented in three projects where this
had been measured.
Staff education and training programs not only improve staff satisfaction and the quality of
dementia care provided to the person with dementia, but improve the care of comorbidities,
and protect other patients (for example, because of the potential for patients with dementia to
wander, act aggressively or engage in sexually inappropriate behaviour). Foreman and
Gardner (2005:8) stated:
The management of a person in an acute hospital is complicated when they have
dementia. Issues such as capacity for communication can affect an otherwise
straightforward management of a clinical condition. In addition, impaired mental
status is the most commonly identified factor in patients who fall while in hospital.
Four centres of training in dementia specific care for formal carers were funded by the
Australian Government over four years from 2005-06 under the Carer Education and
Workforce Training project. The Australian Government’s stated aim was to provide dementia
specific training for up to 9,000 aged care workers and up to 7,000 carers and community
workers. The centres were established in different locations across Australia, each with a
different approach and focus.
The Eastern Australia Dementia Training and Study Centre (EA DTSC) delivers tertiary based
education and training aimed at health care professionals. EA DTSC is led by the University of
Wollongong and partners with the Queensland University of Technology, Griffith University,
University of Sydney, Hammond Care Group, Uniting Care, Blue Care and RSL Care. The
EA DTSC has recently developed Dementia Education Online targeted mainly to
undergraduate students, but also for registered practitioners or support workers.
The WA Dementia Training Study Centre (WA DTSC), a joint initiative of Curtin University of
Technology, Edith Cowan University, University of Western Australia, Alzheimer’s Australia
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Making choices: future dementia care
WA and Industry partners also focuses on training health professionals.40 The stated aim of
WA DTSC is to reach approximately 4,000 health professionals over three years from 2007.
There are four levels of training: (i) undergraduate (including provision of guest lecturers for
undergraduate health courses), (ii) professional practice/staff development, (iii) advanced
clinical practice, and (iv) advanced specialist — the two last both involving formal tertiary
qualifications.
The WA DTSC advised via personal communication (10 July 2008) that the professional
practice/staff development stream in particular has experienced substantial demand. This
comprises a series of seminars and presentations (ten over two years so far) targeted to
Health Care Professionals caring for people living with dementia in both community and acute
care environments with the aim of providing suggestions for care which can be applied in the
workplace.41 The WA DTSC also advised (personal communication 10 July 2008) that since
their focus (and funding) is health professionals, in WA there is a gap in dementia specific
training for those working in aged care who are not health professionals, such as RACF
managers who might have a teaching background for example. WADTSC also advised that,
in groundwork undertaken to set up their curriculum, they discovered a need for training in
palliative dementia care and in person centred care.
The other DTSCs are the Training, Innovation, Mentoring and Education for dementia (TIME)
Centre serving the two states of Victoria and Tasmania (targeting allied health, medical and
nursing professionals and healthcare students) and the DTSC serving South Australia and the
Northern Territory — also aimed at health care professionals.
Certificates III and IV in Aged care work and Certificate III in Home and community care also
include dementia specific competencies and are a key source of education for enrolled nurses
and personal care and nursing assistants employed as direct carers (Table 4–2). These
certificates are part of the Australian Qualifications Framework42, so are recognised nationally,
facilitating movement of workers between locations. CHCAC15A (Provide care support which
is responsive to the specific nature of dementia) is a compulsory unit in Certificate III Aged
Care Work and Certificate III Community Care (Ageing & Disability).
One version of this competency is targeted at HACC service coordinators in
Queensland.43 This is consistent with the identification of dementia training as an area of
training need by HACC workers in SA (Sloan and Barnett, 2006) — 37% of SA HACC
workers surveyed nominated dementia training as an area of need.
The Aged Care Standards and Accreditation Agency has developed a version of this
course for staff working in RACF (demystifying dementia44).
Alzheimer’s Australia also offers a version of this course for respite care workers.45
40
Registered nurses, enrolled nurses, doctors, occupational health therapists, speech pathologists, psychologists,
physiotherapists, social workers and other allied health workers.
41
Competencies include the social context of growing old; the presentation of dementia and process of diagnosis;
approaches to explaining confusion, memory loss and other behaviours associated with dementia; living with
dementia after diagnosis; topics in support and care for people with dementia and their families; strategies to
prevent confusion and memory loss; and strategies for managing behaviours of concern.
42
The AQF is a unified system of national qualifications. The certificates (I-V) recognise skills and knowledge that
meet competency standards agreed by the relevant industry, enterprise, community or professional group (see
http://www.aqf.edu.au/).
43
http://www.health.qld.gov.au/hacc/Cert_III_HACC.asp
44
http://www.accreditation.org.au/DemystifyingDementia
45
http://www.Alzheimer’s.org.au/content.cfm?infopageid=2197
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TABLE 4–2: QUALIFICATIONS OF THOSE WORKING IN DIRECT CARE, 2002 (% OF WORKERS WITH
EACH QUALIFICATION)
Registered
nurse
Post graduate degree
Graduate diploma/certificate
Bachelor Degree
Advanced diploma or diploma
Certificate Level III or IV
Certificate Level I or II
Total with post school qualifications
Total with post school training
Total number employed
1%
8%
60%
25%
4%
1%
148,500
2,800
151,300
Enrolled
nurse
0
2%
6%
24%
56%
12%
25,500
1,700
27,200
Personal
care and
nursing
assistants
0
4%
10%
12%
47%
21%
25,700
18,100
43,800
Physiotherapists
10%
12%
67%
11%
11,200
(a)
11,200
(a) Too small to be meaningful.
Source: Table fully reproduced from The National Institute of Labour Studies (2003:14) Who cares for the elders?
What we can and can’t know from existing data, August. Original source was unpublished data from the 2002
Survey of Education and Work.
Training and awareness packages for health care professionals have also been developed, for
example, aimed at improving the care of people with dementia in hospital.46 The Australian
Government has also funded the Rural Health Education Foundation to produce a series of
educational television broadcasts to assist GPs, geriatricians, aged care workers and other
primary healthcare professionals to understand and be aware of dementia.47
An evaluation of whether or not training in dementia care is ‘adequate’ requires an assessment
of outcomes across a number of care dimensions. Improvements introduced at one dementia
specific home — Winston Lodge in NSW — provide an illustration of the range and types of
improvements possible with training (Box 4-3). Winston Lodge recently received a Better
Practice Award from the Australian Aged Care Standards and Accreditation Agency.
From the information available for this project, it appears that while there are
promising and valuable programs providing information and training for formal
carers of people with dementia, education packages are not offered consistently to
all formal carers (including GPs) Australia-wide, and access is limited depending
on the worker’s background (for example, health professional or other occupation)
and geographic area.
46
http://www.health.vic.gov.au/agedcare/downloads/ideas_education.pdf
47
http://www.rhef.com.au/programs/616/616s.html
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Box 4-3 Winston Lodge, NSW — a dementia specific nursing home
Behaviour Management Program
Winston Lodge is a dementia specific nursing home that has implemented
evidence based better practices in behaviour management to enhance residents’
quality of life. The practices adopted encompass restraint minimisation,
environmental adaptation, diversional therapy, pain management and a focus on
person centred care.
Better practices adopted include:
•
Reduction in psychotropic medications and elimination of chemical restraints:
We have become actively involved in monitoring use of these types of
medications and in consultation with residents’ doctors have been successful
in reducing their use.
•
Elimination of physical restraints: Restraints were removed to reduce anxiety
and frustration of residents and avoid physical de-conditioning. Extensive
consultation with residents’ family members and re-education of staff was
required to overcome opposition to this change arising from a belief that
restraints were required for resident safety.
•
Hip protectors: We provide hip protectors to all mobile residents to protect
them from injury in the event of a fall.
•
Physiotherapy: Each resident has an individually tailored exercise program
that has been designed by a physiotherapist.
•
Pain management: Better assessment of residents has resulted in better
control of pain with a corresponding reduction in disruptive and aggressive
behaviour.
•
Stimulating environment: Environmental changes were made to provide a
stimulating yet familiar environment and assist to orient residents. Families are
encouraged to bring in personal items to help create a homelike environment
for residents.
•
Resident portraits: We are fortunate to have a budding artist amongst our staff
who has produced sketches of each of our residents. These are decorative,
assist in resident orientation and demonstrate the person-centred approach
taken within our service.
These changes have resulted in:
•
20% reduction in falls
•
45% reduction in skin tears
•
71% reduction in aggressive incidents
The functional ability of two residents improved to such an extent that they were
able to move into a hostel for their ongoing care needs.
Staff Education Program
Winston Lodge is a dementia specific nursing home. We found that some of our
new staff reported feeling overwhelmed and lacked confidence in their abilities. We
reviewed our orientation and education systems to ensure staff are getting enough
support and are confident in their abilities to care for our residents.
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Making choices: future dementia care
A comprehensive competency based orientation program was introduced that uses
a package to facilitate self paced learning. The package is designed to be
completed over a period of seven days. The package includes questions and
activities to promote active learning. Photos are used extensively throughout the
package to demonstrate staff practices. Sample copies of forms are included in the
package. A mentoring system was adopted to support new staff and individual
learning and development plans were developed for all care staff.
In order to create a learning culture we implemented a policy that all carers will
undertake one hour of education per week during work hours. We also developed
a resource library for use by staff and family. Financial support is provided to staff
undertaking university education.
This program has assisted us to attract and retain staff. As a result, Agency
staff usage has reduced by 76%. Most importantly, our residents receive better
care as staff have a thorough understanding of our systems and residents’ needs,
are able to anticipate their needs and provide more individualised care.
Nutrition and Hydration Program
Many residents are prescribed a pureed diet and thickened fluids while in hospital
as part of their acute care. We engaged a speech pathologist to re-assess all
residents with dysphagia. We found that most no longer required a pureed diet. A
Robocou machine was purchased to enable meals to be prepared with a
consistency that meets each resident’s assessment needs and staff
education was provided on the preparation of different consistencies of
foods and fluids. These changes resulted in residents showing improved
appetite and 66% of residents gained weight over five months, with the
average weight gain being 2.2kgs. A policy has been introduced where speech
pathology assessments are arranged for residents who have an acute illness that
results in a change in diet, who has had a change in their appetite or who is found
to be losing weight.
Each resident’s weight and body mass index are regularly monitored as weight
loss and malnutrition are often associated with dementia and contribute to
impaired physical and cognitive functioning. A set of digital scales which can be
used with seated residents were purchased. Research showing how to use lower
leg length as an indication of height was applied to determine the body mass index
of those residents who are unable to stand or who have kyphosis.
Hydration was improved by the introduction of twice-daily jelly rounds, in addition
to morning and afternoon tea. Jelly is an alternative way to increase resident fluid
intake as water is the main ingredient. We have found that jelly is eagerly
consumed by most residents, including those who generally refuse fluids. Urinary
tract infections have reduced by 50% since the commencement of the hydration
program.
Source: http://www.accreditation.org.au/WinstonLodge
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Making choices: future dementia care
Family carers
A family member such as a wife, husband or adult child finds themselves gradually
taking on the role of ‘carer’, a new role for which they have probably had no
expectation, ambition or preparation (Shanley 2001:15).
A key aspect to success in informal care for people with dementia is early detection and
diagnosis. This requires education of community carers (including ACAP, HACC, CACP and
EACH staff) and of GPs and practice nurses. In 2006, Australian Government dementia
service development grants were provided to 16 organisations to increase research and
education, including to a Division of General Practice, some community health providers
(including a number of outreach services) and Alzheimer’s Australia for educational programs.
Cognitive Dementia and Memory Services Clinics (CDAMS) in Victoria also provide important
early diagnosis and advice services (Australian Institute for Primary Care 2003). These are
not the only early detection and awareness programs available, but it is difficult to determine
how broadly dispersed knowledge of dementia and the need for early detection is among
those closest to people with dementia and their carers. Links and networks between GPs,
community health providers, formal community service organisations (such as HACC etc) and
Alzheimer’s Australia are important so that people with dementia and their carers are linked
into the services they need. The Australian Institute for Primary Care (2003:10) concluded:
Although CDAMS have established strong relationships with community-based
support agencies such as AAV [Alzheimer’s Australia Victoria], responses from the
CDAMS coordinators suggest that in some regions community services that
address the specific needs of those with mild cognitive impairment are limited or, in
a small number of regions, non-existent; moreover, the surveys of General
Practitioners and support persons suggest a need for more information about
support services. Further development of community services for those with mild
dementia, enhanced coordination of these services with CDAMS, and improved
communication about such services to stakeholders are indicated.
While family carers would find some of the competencies in the formal qualifications outlined
above useful, these courses are not aimed at informal/family carers and there is a cost. The
full Certificate III courses might cost around $1,300 and individual competencies around $100
each. While family carers could purchase the materials (CDs or books) and undertake the
competencies at their leisure, contact with other family carers in a classroom environment
would be useful and potentially expand support networks.
In addition, informal/family carers may require different sorts of training to formal carers.
Family carers may need help to:
Plan ahead — with money, power of attorney, medical management and wills.
Ensure the house is suitable, safe and dementia friendly — eg. decluttering, arranging
locks or other systems to manage wandering, removing sharp corners, removing
furniture at hip level etc.
Adjust expectations, identify disease characteristics and recognise disease stages.
Develop skills in communicating with the care recipient and in managing the behaviours
associated with dementia.
Develop skills in personal care (including lifting and bathing).
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Making choices: future dementia care
Develop methods of self care, for example, dealing with the carer’s personal or
emotional response to the various behaviours that people with dementia may exhibit, the
potential lack of privacy and the responsibility associated with caring.
Manage medications, and interactions with the health system.
Engage outside assistance, for example, with personal care (eating, dressing, hygiene,
incontinence etc), and household tasks.
Develop care plans and routines that reflect circadian-type fluctuations in energy and
cognition of the person with dementia.
Select appropriate tasks and outings to entertain the person with dementia and/or keep
him or her interested and occupied — for example with small tasks around the house
(eg. sweeping or gardening), reminiscing, or walking to relieve a build up of energy.
The key source of assistance and training for family carers is Alzheimer’s Australia,
which offers free workshops for family and friends caring for a person with dementia. Content
includes: the nature of dementia, effective communication, the impact of dementia, activities
for living and pleasure, understanding behaviours of concern (aggression, sundowning and
repetition) and developing effective responses, managing continence, making your home a
dementia-friendly environment, legal issues, providing personal care, services available and
looking after yourself. Other educational and support services provided by Alzheimer’s
Australia include:
the Living With Memory Loss Program — a seven week workshop (two hour
sessions/week) that provides information and support for people diagnosed with early
stage dementia and their carers; and
the National Dementia Helpline including to people living outside the metropolitan area.
RESPITE AND SUPPORT SERVICES
4.3.4
Care needs change over time not only because of the progressive nature of dementia and the
resultant functional dependency of the person needing care, but also because of the range of
factors that may influence the sustainability of the care situation and the carer.
As noted in Chapter 1, generally, five stages of dementia can be identified: diagnosis,
early stage, intermediate stage, late stage and end of life stage. Dementia can also be
classified by severity: mild, moderate and severe.
The care situation varies with the carer’s emotional and physical health, changes in
family relationships and family responsibilities, personal goals and aspirations of the
carer, changes in finances, and social domains change. The relationship between the
carer and the person needing care also impacts on the care situation, with relationship
history, and the way conflict is managed important (Carers Australia 2005). Carers
Australia (2005) illustrated how care needs can vary even when the functional
dependency of the person with dementia is the same, with three examples:
3
3
3
a co-resident spouse carer who is frail and ill;
a co-resident spouse carer who is active and well and has assistance from two
daughters; and
a single daughter carer employed full time living 45 minutes away and with two
dependent children.
The nature and extent of services and supports therefore need to be responsive to both the
functional dependency of the person with dementia as well as the care situation and changes
in both of these over time.
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Making choices: future dementia care
Despite the failure of randomised trials and other research to identify efficable respite
programs — largely because of a lack of high quality research methods and difficult nature of
the research (Lee and Cameron, 2004; Forbes, 2002; Gormley, 2000) — surveys and other
communication with carers confirm that access to flexible respite care is a key factor in the
sustainability of community care of people with dementia, and that respite care that
maintains the quality of life of the person with dementia is highly valued by carers (studies
cited by Shanley, 2001). Provision of a broad range of different types of respite and support
services is important so that the spectrum of individual needs can be addressed. This
includes carer needs, for example:
very short, short and longer term timeframes to cover short trips to the bank to vacations
of several weeks;
respite that can be booked in advance (for example to cover a vacation) or that is
required urgently (for example, to cover for carer illness);
regular or irregular respite, for example, with a regularity that allows carers to continue
paid work;
respite and support at various times during the day or night; and
provision of a range of expertise (such as medication management, specialist advice on
handling dementia behaviours).
It also includes the needs of the person with dementia, ie. the service needs to provide care
that is suitable for the stage of disease (mild, moderate, or severe dementia) — including
security against wandering, visual cueing etc.
Shanley (2001) noted that to ensure the range, availability and flexibility of respite for people
living with dementia and their carers is as wide as possible it is essential to:
1
encourage family and friends, community organisations (such as sporting clubs,
professional associations, senior citizens, theatre and music, art or church groups) and
general programs for frail older people to be more inclusive of people living with
dementia and their carers. This will reduce the likelihood of social and emotional
isolation often experienced by these people.
2
encourage services that provide respite for people living with dementia to do this in as
flexible a way as possible.
3
encourage dementia-specific services and key people in the health and community care
sectors to work towards having a range of respite services in the local area to reflect the
many and varied needs of carers and people living with dementia.
Further, flexible respite and support services will be expanded by:
1
Improving access by people with dementia to non-dementia specific respite services —
although this is complicated by the potentially higher cost of care for people with
dementia including the need for building modifications to improve security and safety.
2
Ensuring funding and program guidelines are flexible and facilitate flexibility in provision
of care.
3
Ensuring that funding for dementia respite and support acknowledges the potentially
higher unit costs of dementia care noted earlier in Chapter 1, and furthermore,
acknowledges that for people with dementia entering certain types of respite care (for
example, residential care while their carer has a vacation) there may be higher unit costs
compared to other respite residents in addressing anxiety and consequent agitation
induced by the change in circumstances (even through temporary). Higher unit care
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Making choices: future dementia care
costs may constitute a barrier to some people with dementia and their carers in
accessing respite and other services.
4
Ensuring eligibility rules and requirements do not unnecessarily preclude people with
dementia and their carers benefiting from all types of respite or support.
5
Ensuring other barriers do not emerge (such as lack of cultural awareness or geographic
location).
6
Facilitating networking across service providers and between services and clients to
ensure awareness of what is available, identify gaps in service provision and to provide
continuity of care.
In all instances, awareness of and training in dementia specific care by broader
non-dementia-specific respite and support services and community organisations,
together with transport assistance for carers are vital complements, without which,
access to respite will be unnecessarily constrained. Notably, capacity for the last
component is rarely overtly or specifically funded.
The Australian Government reported the existence of over 430 community-based respite
services in 2008, including in-home, day centre, host family, residential overnight cottage-style
accommodation and vacation, with or without the support of a care worker.48 In addition,
Commonwealth Carer Respite Centres (CCRCs) specifically work with carers to provide
assistance. However, if the person with dementia is already receiving CACP or EACH,
CCRCs are limited in what they can provide. Eligibility for RACF respite care is determined by
an ACAT assessment. Each person is entitled to 63 days of respite care in a financial year,
with the possibility of extensions of 21 days at a time if necessary. The 63 days can be made
up of regular half days in a community day care centre, or shorter or longer bursts (eg a week
or more in residential care). There is a daily care fee for respite in a RACF. Receipt of a
Centrelink or Veteran’s allowance means the daily fee is at the pensioner rate. Self funded
retirees pay more. At 30 June 2007, the maximum basic daily care fee that a resident could
be asked to pay was $30.77 for means-tested pensioners and respite residents, and $38.35
for non-pensioners (DoHA 2007).
The Australian Government Portfolio Budget Papers for Health and Ageing, and the annual
Reports on the Operation of the Aged Care Act 1997 recorded expenditure on family carers for
respite and other types of support as per Table 4–3. The Australian Government estimated
there were 475,000 primary carers helping older Australians or younger people with a disability
to live at home and in their community (DoHA 2007:19) — and estimates in this report suggest
136,400 people with dementia were being cared for the community. With these quantitative
estimates of carers in mind, the Australian Government estimates of the total quantity of
respite care provided include:
38,806 people received residential respite in RACF in 2006-07 (DoHA 2007) including
1.17million days of respite care and 52,400 admissions.
Funding was provided for 20 new day respite sites in existing RACFs in 2007-08
(Australian Treasury, 2007). The nominated target for respite assistance in the 2008-09
Australian Government Budget, for 2008-09,49 was for
48
http://www.health.gov.au/internet/main/publishing.nsf/Content/ageing-carers-nrcp.htm#2
49
http://www.health.gov.au/internet/budget/publishing.nsf/Content/20082009_Health_PBS_sup4/$File/Health%20and%20Ageing%20Portfolio%20Budget%20Statements%202008-09.pdf
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more than 84,000 carers to receive respite assistance through respite services and
Commonwealth Respite and Carelink Centres funded under the National Respite
for Carers Program in 2007-08 (the most recent year for which data are available).
In 2006-07, there were over 600 respite services which provided respite in a
variety of settings including 71 overnight community respite services and 96 new
or expanded respite services for employed carers funded under the 2005-06
Overnight Community Respite and Employed Carer Budget initiatives (DoHA,
2007).
In rural and remote areas, the 2005-06 Australian Government Budget provided funding
for 30,500 days of respite care per year from 2005-06 to 2008-09 under the Senior
Australians Rural and Regional Respite Services Program (Australian Treasury, 2006).
Also, 94 Multipurpose Service sites received respite funding 2005-06 (Australian
Government Budget Health and Ageing Portfolio 2006-07).
In 2005-06, the Australian Government Budget provided $95.5 million over four years
to give working carers of the frail aged more opportunities and flexibility to combine
caring with work or training and study to enter the workforce. Under this measure,
96 new or expanded respite services were funded in 2005-06. The services
include respite delivered in centres and in the homes of carers. As part of this
initiative, the Department is piloting innovative models of respite for employed
carers through the Employed Carer Innovation Pilots. (DoHA 2006:18).
It is not clear to what extent these respite services were suitable for, or accessed by,
people with dementia. An example of respite for employed carers is in Box 4-4 — again the
respite care available for employed carers is not specifically aimed at people with dementia.
Some respite services are funded by state and territory governments (eg. HACC respite care)
and there is a funder/provider split so that community organisations and local government
providers are common. It can therefore be very difficult for carers to identify the services
available to them, and whether or not they are eligible. As TOCC (2007) stated, the
current system of support for carers is fragmented and there is a clear need for a ‘onestop shop’ for carers, linked to all organisations offering support services.
Provision of sufficient respite and support services that are easy to access is problematic
internationally. The survey by Alzheimer’s Europe (2007) concluded that over half the 1,200
carers surveyed lacked access to services such as home care, day care or residential/nursing
home care.
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Making choices: future dementia care
TABLE 4–3: AUSTRALIAN GOVERNMENT BUDGETS — EXPENDITURE ON RESPITE CARE — CURRENT
PRICES — ($ MILLION)
2005-06
Residential Aged Care respite
care(a 2006-07:46)
Demonstration sites for day
respite in RAC(b)
NRCP(a)
Senior Australians Rural and
regional respite services(b)
Senior Australians Overnight
cottage respite(b)
Senior Australians residential
respite funding(b)
Senior Australians respite to
assist employed carers(b)
Additional support for
community based respite care
2006-07
105.8
2007-08
2008-09
2009-10
1010-11
122.5
140.0
167.0
7.9
185.0
11.0
1.4
2.6
2.6
2.7
8.8
17.0
17.3
17.8
5.9
8.4
13.5
13.9
13.5
26.7
27.3
28.0
2.6
5.2
11.0
11.2
7.9
10.7
Sources: (a) DoHA annual reports on the Operation of the Aged Care Act. (b) Australian Government Health and
Ageing Portfolio Budget Papers.
Box 4-4 Innovative respite care targeted to employed carers and carers of
people with dementia
FSG Australia advertises that the R&R at Inala Program supports carers of older
Australians in the Brisbane South Region through offering extended hours and
overnight respite in a day respite centre environment.
Employed Carers Project - West Moreton
Flexible respite utilising a host family or in-home model to provide assistance to
employed carers of people over the age of 65 years living in the rural or hinterland
areas of the region. The host family worker provides support for up to two care
recipients whilst their carer attends their paid employment.
Employed Carers Project - Brisbane South
Provides a flexible respite package to carers of people over the age of 65 years
living in the Brisbane South region to assist them to continue or enter in the
workforce.
Bayside Dementia Cottage - Brisbane
The respite cottage provides a personalised respite experience in a home-like
environment. It will be a model of innovation in dementia respite care and will work
closely with other dementia and specialist services in responding to this special
needs group. It caters for overnight, weekend or longer, planned and unplanned
stays.
http://www.fsg.org.au/pages/page.php?page=46
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Making choices: future dementia care
4.3.5
POTENTIAL WORKPLACE INITIATIVES AND WORK-BASED CARE
TOCC (2007) found via surveying carers that:
The strategies which would most assist carers to balance their work and caring
responsibilities are (i) improved access to support services (ii) greater workplace
flexibility and (iii) improved quality of support services.
Workplace flexibility varies across and within organisations — carers have difficulty
accessing flexible work practices. Sometimes this is because of a lack of understanding
by managers suggesting a need for more empathy and awareness raising.
Those expecting to care for an aged person or a person with a disability in future
indicated they would like to manage this by: working more flexible hours (70% of those
surveyed), reducing their work hours (54%), taking leave (50%) or by working from home
(41%).
TOCC (2007) noted that the number of Employed Carer Innovative Projects (a cross portfolio
Australian Government initiative funded as per Table 4–3) is small relative to the number of
carers and the impact confined to a local community. Further, there is no apparent funding
from June 2008.
A key issue is how to ensure workplace flexibility. Increases in workplace flexibility may come
at a cost in some workplaces (for example, time spent by managers and supervisors
accommodating and coordinating staff leave and arrangements with respect to working hours)
— although notably there are productivity and other benefits to employers such as reduced
presenteeism, retention of valuable skills and a reduction in turnover costs. Managers and
supervisors may need training and advice on how to efficiently and effectively accommodate
the varying needs of carers. Extending training and education about the needs of carers to coworkers would also assist in implementation of family friendly workplaces.
Other incentives may also be required such as financial incentives for employers to participate
in programs facilitating carer participation in the labour force (TOCC 2007). Financial
incentives were discussed in Section 4.2 and legislative reform has also been suggested
(TOCC, 2007).
TOCC (2007) noted the Commonwealth Sex Discrimination Act 1984 has fallen behind
antidiscrimination legislation enacted by the states and territories (the latter being
generally broader) and thus leaves employers and employees uncertain about their
rights and obligations. Notably, TOCC (2007) quotes the Human Rights and Equal
Opportunity Commission conclusion that Federal antidiscrimination law provides
insufficient protection for those with carer responsibilities and an insufficient platform to
promote change.
Employment legislation covering paid and unpaid leave entitlements is also an option to
consider, including conversion of sick leave to carer’s leave and access to part-time
leave.
4.4
SPECIAL NEEDS
The groups with special needs discussed here include younger people with dementia,
Indigenous Australians, CALD Australians, those with severe behavioural and psychological
symptoms of dementia and people living outside metropolitan areas. None of these groups or
their carers are mutually exclusive but all risk disadvantage if formal dementia care services
are not adaptable and able to provide a diverse range of care.
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For Indigenous people and the CALD population, the impact of dementia on thinking, memory
and emotion, language and culturally appropriate care are important. Services at the regional
and local level need to be responsive to the particular profiles of the Indigenous and other nonEnglish speaking people with dementia and their carers. While language and communication
are important factors in service delivery, so too are the variety of cultural customs, traditions
and values. There is a diversity in perception and understanding of dementia across cultures.
The term dementia is meaningless in some communities while in others it is perceived as a
normal part of ageing. There are also beliefs that dementia is related to mental illness, with an
extreme of this being the perception that dementia is a form of ‘craziness’. In light of these
diverse perceptions it is important to improve community education and raise
awareness of dementia. Linguistically and culturally sensitive screening tools, carer
assistance and support are very important, requiring knowledge of communities and
their needs at a local level.
4.4.1
YOUNGER PEOPLE WITH DEMENTIA
In February 2009, Alzheimer’s Australia held the Younger Onset Dementia Summit in
Canberra, funded by the Australian Government. This Summit brought together over 100
participants from across the country – including 21 younger people with dementia and 49
family carers – to discuss the issues faced by younger people with dementia, and make
recommendations to the Government.
The Summit participants prepared a communiqué for the Australian Government asking that
they recognise the needs of people living with younger onset dementia by providing dedicated
funding for services that meet their unique needs.
The six priority areas that required action were identified as being:
increased awareness to reduce stigma and social isolation;
timely and accurate diagnosis;
access to appropriate services;
employment and financial needs;
legal and bureaucratic issues; and
increased investment in research.
Younger onset dementia is the term used to describe any form of dementia diagnosed in
people under the age of 65. It is estimated that younger onset dementia affects approximately
10,000 people in Australia today, which is approximately 4% of the total population with
dementia.
All people with dementia and their family carers want timely, quality and accessible services
that meet their individual and holistic needs throughout all stages of the disease process.
While many of the needs of younger people with dementia are similar to those of older people
with dementia, there are significant differences primarily because of the life stage at the onset
of dementia.
The issues younger people may face include (Alzheimer’s Australia, 2007c):
difficulty and/or delays in getting an accurate diagnosis;
family responsibilities including still actively raising a family;
currently working or being only recently retired;
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Making choices: future dementia care
having significant financial commitments based on previous earnings;
needing to revise their expectations of everyday life, such as work, finances, living
arrangements, social and sexual relationships, and independence and responsibility for
others;
future plans that are affected at an earlier stage in life;
being more likely to have a rarer form of dementia than Alzheimer’s disease or a
genetically-based cause; and
experiencing difficulty in accessing appropriate services, particularly as younger people
with dementia are often otherwise physically strong and healthy.
Timely and accurate diagnosis is particularly problematic for younger people because there is
low awareness, including among health professionals, that younger people may have
dementia. In many instances, accurate diagnosis can take several years, causing individuals,
their families and carers a great deal of anxiety.
The delays in diagnosis for younger people also lead to delays in access to services that
provide care and social support for younger people and their carers. People with younger
onset dementia are often at a different stage of life than older people with dementia, and as
such, require different or tailored services to support them and their families.
The medical classification of dementia as a condition associated with ageing also makes
diagnosis and support services problematic for people with younger onset dementia.
Dementia support is usually funded through the Aged Care Program. There is a need for
certainty about whether this program will continue to provide support for younger people with
dementia or whether in future it will be the responsibility of disability and/or mental heath
programs.
4.4.2
INDIGENOUS AUSTRALIANS WITH DEMENTIA
Little information is available about Indigenous Australians with dementia, or their carers
(informal or formal), although a number of research projects have recently commenced (eg, at
Flinders Aboriginal Health Research Centre and the University of NSW Dementia
Collaborative Research Centres).
In their assessment of the burden of disease in the Indigenous population, Vos et al (2007)
assumed the same dementia prevalence as the total Australian population — incidentally
calculating 498 disability adjusted life years from dementia among Indigenous people in 2003
— almost certainly an underestimate given key causes of dementia — diabetes,
cardiovascular disease and alcohol-related issues — are experienced at higher rates among
Indigenous Australians compared with other Australians (see for example, Vos et al 2007).
Epidemiological studies of rates of dementia (in particular because of its impact on thinking,
memory and emotion) among Indigenous Australians are affected by language and cultural
differences which limit the usefulness of white Australian diagnostic instruments used to
assess the disease. The Kimberley Indigenous Cognitive Assessment (KICA) is the only
assessment tool that has been tested and is considered suitable for older Aboriginal and
Torres Strait Islander people in rural and remote areas. The KICA was used in a sample of
400 Indigenous Australians aged 45 or over in the Kimberley (the total population in that age
group in the area is around 2,100 people). The prevalence of dementia in those aged 45 or
over was 12.4% (compared with 2.6% in the Australian population generally) (Table 4–4).
Notably, the prevalence rate among the Indigenous people aged 45-59 years in the sample
was 26 times the rate in the general population of that age, suggesting Indigenous people in
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Making choices: future dementia care
that area develop dementia substantially earlier than other Australians. The Australian
Government uses the age of 50 or over as an indicator for planning purposes for aged
care services for Indigenous Australians in view of their shorter life span and poorer
health. Dementia prevalence estimates from the Kimberley study suggest this age
threshold may be too high for Indigenous people.
TABLE 4–4: PREVALENCE OF DEMENTIA, INDIGENOUS AUSTRALIANS LIVING IN THE KIMBERLEY
Age
Number with
dementia in
sample
(indigenous)
Number of
people with
dementia in
Australia
Dementia
prevalence
rate in
sample
Australian
dementia
prevalence
rate
Prevalence
ratio
(sample to
national)
45-59
60-69
70-79
80+
5
12
11
17
3,539
12,322
49,804
108,713
0.026
0.169
0.164
0.567
0.001
0.009
0.040
0.190
26.0
19.9
4.1
3.0
Total
45
174,377
0.124
0.026
4.8
Source: Alzheimer’s Australia (2007).
Access Economics projections of the Indigenous population from Access Economics‘
Demographic Model of the Indigenous population (AE DEM-I) were used to generate
estimates of the number of Indigenous people with dementia for 2006 to 2018 (Table 4–5).
The high set of estimates is based on the prevalence rate estimates from the Kimberly study
(Alzheimer’s Australia 2007), and the low set of estimates based on prevalence rates for the
total Australian population (also from Alzheimer’s Australia, 2007). The totals in the high set of
estimates are nearly five times those in the low set. It is likely that the population of
Indigenous Australians with dementia falls between the low and high estimates.
If the life expectancy of Indigenous Australians improves over time, the number of Indigenous
people with dementia in future will increase, but the rate of increase will depend on what
happens to Indigenous dementia prevalence rates as Indigenous health outcomes improve.
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Making choices: future dementia care
TABLE 4–5: LOW AND HIGH ESTIMATES OF THE NUMBER OF INDIGENOUS AUSTRALIANS WITH DEMENTIA (‘000)
2006
2007
2008
2009
2010
2011
2012
2013
2014
2015
2016
2017
2018
2.1
4.9
1.7
3.0
15.7
2.2
5.1
1.8
3.0
16.3
2.3
5.3
2.0
3.0
16.8
2.3
5.5
2.2
3.0
17.3
Number of Indigenous people with dementia (‘000) based on prevalence rate estimates from the Kimberly
45-59
60-69
70-79
80+
Total
1.6
2.5
1.2
2.7
10.9
1.7
2.8
1.2
2.8
11.5
1.7
3.1
1.2
2.9
12.1
1.8
3.4
1.2
3.0
12.6
1.9
3.6
1.2
3.0
13.1
1.9
3.9
1.2
3.1
13.6
2.0
4.1
1.3
3.1
14.1
2.0
4.4
1.4
3.1
14.6
2.1
4.6
1.6
3.1
15.2
45-59
60-69
70-79
80+
0.1
0.1
0.3
0.9
0.1
0.1
0.3
0.9
0.1
0.2
0.3
1.0
0.1
0.2
0.3
1.0
0.1
0.2
0.3
1.0
0.1
0.2
0.3
1.0
0.1
0.2
0.3
1.0
0.1
0.2
0.4
1.0
0.1
0.2
0.4
1.0
0.1
0.2
0.4
1.0
0.1
0.3
0.4
1.0
0.1
0.3
0.5
1.0
0.1
0.3
0.5
1.0
Total
2.3
2.4
2.5
2.6
2.7
2.8
3.0
3.1
3.2
3.3
3.4
3.5
3.6
Number of Indigenous people with dementia (‘000) based on all Australian prevalence rate estimates
Source: AE DEM-I, and Alzheimer’s Australia (2007).
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Utilisation of aged care services by Indigenous people
In general (apart from CACPs) Indigenous people have lower rates of access to aged care
services, suggesting that Indigenous people with dementia similarly have lower service
utilisation rates.
Assessment and recommendation by ACATs are mandatory for admission to residential care
or receipt of a CACP, EACH package, EACH-D package or services under the Transition
Care Program. Rates of assessment among Indigenous people were lower than those
among all Australians (SCRGSP 2008). There was a lower rate of admission overall to aged
care services by Indigenous people (Table 4–6). The rate of receipt of CACP per 1,000
Indigenous people aged 50 or more is the exception, however (Table 4–7).
As well as accessing mainstream services, Indigenous Australians also receive Indigenousspecific services funded under the National Aboriginal and Torres Strait Islander Flexible
Aged Care Program (FACP). At 30 June 2007, there were 617 flexible places for Indigenous
people under the FACP (SCRGSP 2008). Most of these are in rural and remote locations.
In the 2006-07 Budget, funding was provided to extend the number of FACP places to 750.
TABLE 4–6: RECIPIENTS PER 1,000 BY AGE GROUP, PERMANENT AGED CARE, CACP AND EACH,
2007
All Australians
Persons
Males
Females
under 65
0.5
0.5
0.5
65–69
8.5
8.2
8.9
70–74
18.1
16.2
19.9
75–79
44.0
34.9
51.6
80–84
101.1
71.4
122.1
85+
275.6
183.4
320.9
under 50
0.3
0.2
0.3
50–54
6.3
5.6
7.0
55–64
21.5
17.3
26.0
65–74
75.8
54.6
98.4
75+
133.7
98.2
160.4
Indigenous Australians
Source: SCRGSP (2008).
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TABLE 4–7: INDIGENOUS AGED CARE RECIPIENTS PER 1,000 PEOPLE IN THE RELEVANT AGE
GROUP, 2007
Indigenous people
aged 50+
Type of program
Total Australian (all
Australians aged 70+
and Indigenous aged
50+)
High care RACF
15.1
53.3
Low care RACF
7.1
24.4
EACH
0.4
1.5
CACP
25.9
17.1
Total
48.61
96.26
Source: SCRGSP (2008).
Indigenous dementia care recipients
In the 2002 Census week, 121 CACP clients with dementia were identified as Indigenous –
2.6% of CACP clients with dementia and around 9% of Indigenous CACP clients (AIHW,
2007:chapter 5). If 9% of Indigenous CACP clients had dementia in 2006 then there were
108 Indigenous people with dementia receiving CACP (Table 4–8). There were also two
Indigenous Australians receiving EACH-D in 2006 (Table 4–8). Given that in 2006 —
according to Table 4–5, there were between 2,300 and 10,900 Indigenous people aged
45 years or more with dementia, the rate at which these Australians were receiving formal
assistance in the community was very low.
TABLE 4–8: INDIGENOUS RECIPIENTS OF COMMUNITY CARE, 30 JUNE 2006
Indigenous recipients
CACP
EACH
EACH-D
1,204
24
2
Indigenous status
unknown or not stated
134
12
0
Source: AIHW (2007a).
Indigenous dementia carers
Administrative data sets provide the following information about formal and family carers of
Indigenous Australians with dementia:
Around 162 Indigenous carers of people with dementia were assisted by a
Commonwealth Carer Respite Centre in 2004-05 (AIHW, 2006:122).
In 2007, 33.4 per 1,000 Indigenous people aged 50 years or over contacted Carelink
Centres50, compared with 102.2 per 1,000 people for all Australians aged 70 years or
over plus Indigenous people aged 50–69 (SCRGSP, 2008).
50
Commonwealth Carelink Centres are information centres for older people, people with disabilities, carers and
service providers. Information is provided on community services and aged care, disability and other support
services available locally or anywhere in Australia, the costs of services, assessment processes and eligibility
criteria.
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In 2001, Census data suggest that 2% of people classifying themselves as employed
caring for an aged or disabled person were Indigenous (1,037 Indigenous people)
(AIHW, 2003).
There were also 853 Indigenous health workers (AIHW, 2003). .
While it is difficult to draw hard and fast conclusions from these (inadequate) data, the
numbers imply either a shortage of formal carers/care services able to provide culturally
appropriate assistance to Indigenous Australians with dementia and their carers, or a
substantial need for training among non-Indigenous people in culturally appropriate dementia
care for Indigenous Australians.
Alzheimer’s Australia has prepared a number of information kits to assist with education and
training of those caring for Indigenous people with dementia.
4.4.3
CULTURALLY AND LINGUISTICALLY DIVERSE AUSTRALIANS
Culturally and linguistically diverse Australians with dementia have specialised care needs.
A number of studies have shown that the last language acquired is the first to be lost in
people with dementia. Older people who migrated to Australia from countries of a non
English speaking background may revert to their native language as a dementia
develops. That language may not necessarily be familiar to all family members or
carers, and there is a need to identify support people who speak the language to assist
during this time (Moonee Valley Melbourne Primary Care Partnership and Alzheimer’s
Australia 2007). Notably, loss of language is associated with dementia and other
causes of memory loss, not ageing itself (Howe, 2006).
People from CALD communities are likely to be diagnosed with dementia later and
often at crisis point due to the stigma associated with dementia, lack of knowledge of
the service system and lack of culturally appropriate tools (Moonee Valley Melbourne
Primary Care Partnership and Alzheimer’s Australia 2007).
Good knowledge and understanding of the person’s past plays a crucial role in
dementia care as many people from migrant backgrounds have had traumatic past
experiences (such as war) that can impact on family relationships and service provision
(Moonee Valley Melbourne Primary Care Partnership and Alzheimer’s Australia 2007).
The Alzheimer’s Australia ‘This is Your Life’ booklet has been developed to assist in
these circumstances.
Understanding the responsibility of care in culturally diverse communities is important.
With some traditional communities there is an expectation that the family will take on
the role of carers. However this is not always possible due to competing pressures of
the carer’s own family and work commitments. Feelings of guilt and resentment may
need to be addressed when deciding on the appropriate services (Moonee Valley
Melbourne Primary Care Partnership and Alzheimer’s Australia 2007).
Kyriazopoulos (2007) noted the need for cross cultural coordinators, awareness raising, and
linguistically and culturally sensitive screening tools in dementia care for the CALD
population.
A report for Alzheimer’s Australia by Access Economics (2006) found that, overall in the
period 2001 to 2050 there is projected to be a fall in the proportion of Australians speaking
English (83.8% to 82.4%) and other European languages (7.6% to 6.0%), with a greater
proportion speaking Asian (6.0% to 8.3%) and Middle Eastern (1.8% to 2.3%) languages.
The proportion of people with dementia who speak English at home is projected to increase
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Making choices: future dementia care
as a share of total prevalence and incidence to nearly 90%, before it starts to fall around
2040, reflecting that the oldest Australians are predominantly English speakers. In 2005, of
those aged over 80 years, around 90% spoke English and around 8% spoke other European
languages at home.
FIGURE 4-1: DEMENTIA PREVALENCE IN PEOPLE WITH NON-ENGLISH SPEAKING BACKGROUNDS IN
AUSTRALIA AND ENGLISH SPEAKERS, 2005-2050
700
Other European
45
600
40
Asian
500
35
30
400
25
300
20
15
In English speakers ('000)
In people from non-English speaking backgrounds ('000)
50
Middle Eastern
African & South
American
Other
200
Indigenous
10
100
5
English
2050
2040
2030
2020
2010
0
2005
-
Left axis: Other languages spoken at home. Right axis: English spoken at home.
Source: Access Economics (2006).
Provision and utilisation of aged care services by the CALD population
National Institute of Labour Studies (2004) undertook a survey of all residential aged care
facilities in Australia, together with a survey of 6,199 of the direct care workers whom they
employ. The surveys found that about 10% of facilities aim to cater for a specific ethnic or
cultural group (25% Italian, 12% Aboriginal, 12% Chinese, 11% Greek, 8% Dutch and 6%
Polish). About the same proportion stated that a large proportion of their direct personal care
workers came from a particular ethnic group (although this sometimes reflects ethnic
segmentation in labour markets due to networking and discrimination).
Overall, the CALD population were less likely to access aged care services than the average
(Table 4–9). However, for care recipients aged 75 years or older, use of both CACPs and
EACH packages in 2006 by people born overseas in countries where English is not the
predominant language is higher than for those born in Australia or other English-speaking
countries (AIHW, 2007a). On the other hand, use of permanent RACF in 2006 per 1,000
people aged 70 or over by people born overseas in non-English speaking countries was
lower than average in every age group (AIHW, 2007c).
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Making choices: future dementia care
TABLE 4–9: CALD AGED CARE RECIPIENTS PER 1,000 PEOPLE IN THE RELEVANT AGE GROUP,
2007
CALD population
aged 70+
Type of program
Total Australian (all
Australians aged 70+
and Indigenous aged
50+)
High care RACF
35.6
53.3
Low care RACF
12.5
24.4
EACH
1.5
1.5
CACP
15.1
17.1
Total
64.7
96.26
Source: SCRGSP (2008).
Dementia care for the CALD population
In 2004-05 (AIHW 2007):
18% of ACAP clients were born in non-English speaking countries;
21% of CACP clients were born in non-English speaking countries; and
28% of EACH clients were born in non-English speaking countries.
In 2006, 42% of EACH-D recipients were born in countries where English was not the main
language spoken (AIHW, 2007a) compared with 23.5% of people from a non-English
speaking country as a proportion of the total population aged 70 years or over (SCRGSP
2008:Table 13A.19).
The AIHW (2007:125) reported data from the 2003 SDAC showing that 63% of co-resident
carers and 57% of co-resident primary carers were born in Australia. Of people born
overseas, around 70% were born in countries other than the main English speaking
countries.
4.4.4
PEOPLE WITH DEMENTIA WHO NEED PSYCHOGERIATRIC SERVICES
The management of dementia is complicated by behavioural and psychological symptoms of
dementia (BPSD), such as psychosis, depression, agitation, aggression and disinhibition
(ie, unrestrained behaviour resulting from a lessening or loss of inhibitions or a disregard of
cultural constraints). BPSD is an umbrella term for a heterogeneous group of non-cognitive
symptoms that are almost ubiquitous in dementia. Rates of BPSD vary according to how
symptoms are ascertained, thresholds of severity, and setting. For example, rates of BPSD
have been estimated at 61%–88% among people with dementia in a community setting,
29%–90% in residents of Australian nursing homes, and 95% among hospitalised patients in
long-term acute care (LAMA Consortium, 2007).
BPSD create problems for the individual, the community and the healthcare system. They
are associated with lowered functional abilities and poorer prognosis, an increased burden
on caregivers and nursing-home staff, higher costs of care and earlier institutionalisation.
Hospitalised patients with BPSD are more difficult to discharge, because of the difficulty of
placing them elsewhere.
Currently, in Australia, services for people with BPSD remain ad hoc and fragmented. It is
unclear who should bear responsibility for this population – state or federal governments,
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Making choices: future dementia care
geriatric or psychogeriatric services, generic mental health services or specialist mental
health services for older people, primary or secondary health services. Some states have
developed specialised facilities — psychogeriatric nursing homes in Victoria, psychogeriatric
extended care units in Western Australia, and CADE (Confused And Disturbed Elderly) units
in New South Wales — to accommodate people with dementia who cannot be cared for at
home or in mainstream residential care facilities. However, these facilities are not equitably
distributed and do not necessarily have special resources for people with dementia and
severe behavioural complications.
The management of patients with BPSD is a particular problem in rural and remote areas,
where there is a dearth of specialist services and the many partners in care tend to work
independently. Modes of delivery that have been investigated in rural areas include
telemedicine and specialist fly-out clinics. Funding for services in rural and remote areas is
unreliable or non-existent. Previous federal government initiatives have not been sustained
or incorporated into routine practice. The availability of psychosocial interventions is limited.
Judiciously prescribed psychotropic medications can be effective, but there are legitimate
concerns about the excess or inappropriate use of medications for residents in nursing
homes (Brodaty et al, 2003).
People with dementia and their families and carers use a significant quantity of health
services, including GPs, hospitals, pharmaceuticals, state mental health services, as well as
aged care assessments, community care programs and residential aged care. A better
coordinated and integrated approach to health care system is important for all Australians
and people with dementia are no exception. People who have complex needs (for example,
acute psychiatric problems or intellectual disabilities) as well as dementia find it difficult to
access appropriate care because of the division of responsibility for aged, mental health care
and disabilities between the Australian Government and the state and territory governments.
The recent development of the Dementia Behaviour Management Advisory Services under
the Dementia Initiative may, over time, help to address these discontinuities and gaps in
service, but more remains to be done if the needs of those with dementia and BPSD are to
be met.
4.4.5
RURAL AND REMOTE AUSTRALIANS WITH DEMENTIA
Lower regional populations and population dispersion mean that dementia specific services,
like other services in regional areas, cost more per person to provide. To the extent that
governments are not prepared to wear these higher costs, carers of people with dementia
must accommodate the higher financial and other costs of caring, including by transporting
the person with dementia for relatively longer distances, or shifting to an area providing
dementia care services.
Based on the population distribution at Census 2006, there were potentially 21,000
Australians with dementia aged 60 years or over in outer regional, remote and very remote
regions (Table 4–10). These estimates need to be factored up for non-response to the
Census so the number of people with dementia is likely to be 21,500.51 Given that there
were around 210,800 people with dementia in Australia in that year (Access Economics,
2005), this represents around 10%. These estimates are likely to be misleading, however,
because some people with moderate or severe dementia may move to accommodation in
51
Population data directly from the Census underestimates the total estimated resident population (ERP) because
of non-response to the Census. In this case, the number people aged 60+ from the Census in 2006 was
3,602,466, whereas the ERP in 2006 was 3,674,961. The latter are not freely available by remoteness area.
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Making choices: future dementia care
inner regional areas or major cities, in part because of a lack of appropriate services in
regional areas. Consistent with this, the AIHW (2007) reported that,
69% of carer contacts with Alzheimer’s Australia DESP lived in major
Australia, with a further 25% living in inner regional Australia and 5.4%
outer regional Australia. Similarly, 73% of distinct people lived in major
Australia, with a further 20% living in inner regional Australia and 6%
outer regional Australia. Less than 1% of contacts or distinct people
remote regions of Australia.
cities
living
cities
living
lived
in
in
in
in
in
TABLE 4–10: NUMBER OF PEOPLE WITH DEMENTIA IN RURAL AND REMOTE AREAS, 2006
Age
Outer regional
Remote
Very remote
Total
60-64
65-69
70-74
75-79
80-84
85-89
90-94
95+
Male
638
727
1,128
1,459
1,788
1,230
693
193
Female
293
511
1,012
1,674
2,505
2,456
1,679
557
Male
90
95
131
166
177
120
68
26
Female
36
56
110
167
229
232
151
57
Male
38
36
46
52
55
40
21
10
Female
15
20
37
50
64
52
44
23
Male
766
858
1,305
1,677
2,020
1,390
782
229
Female
344
588
1,159
1,892
2,798
2,740
1,875
638
60+
7,857
10,689
874
1,038
297
305
9,028
12,032
Source: Prevalence rate estimates from Access Economics 2005, and population estimates by remoteness area
(ASGC) from ABS 2006 Census tables http://www.censusdata.abs.gov.au
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5. STRATEGIES AND RECOMMENDATIONS
This final chapter draws together the findings from the previous chapters, summarising the
implications of the research – literature review, survey, modelling and issues – and distils
elements important for strategic planning, concluding with a brief set of recommendations.
5.1
SUMMARY OF PREVIOUS CHAPTERS
In coming decades there will be a greater future need in Australia for care services for people
with dementia. In this report, ‘care’ incorporates both formal care services associated with
the funded health system (provided by paid care staff and some volunteers), and informal
care provided gratis by family carers, friends or neighbours.
An increase in the proportion of women participating in the labour force and the rise in the
proportion of people living alone have led to suggestions that the propensity to provide
informal care will fall. In concert, government resources available to pay for any type of care
are likely to become relatively more scarce over time reflecting demographic ageing,
epidemiological changes and the responsiveness of demand for health and aged care
services to higher incomes and technology over time. There is likely to be increased policy
emphasis on population, participation and productivity measures that can mitigate against
these factors. The impacts will be either greater fiscal cost (higher taxation since higher debt
is not sustainable long term), service reductions (unlikely to be preferred), or an increase in
private provisioning for care services.
Care needs vary depending on the stage of dementia, its variable symptoms, and the context
of the individual. Around the world, the large majority of people with dementia are cared for
at home, reflecting the lack of facilities in developing countries and a move to a philosophy of
community care and ‘ageing in place’ in developed countries.
Caring for a person with dementia can have a negative impact on the health and wellbeing of
the carer, particularly family carers over longer periods – depression, anxiety, stress,
physical health impacts and sleep disruption – more so than for other conditions. Carer
burden is caused by primary stressors (care recipient characteristics eg, particular
behaviours) and secondary stressors (eg, family and work issues). Access to flexible
support, information and respite services remain key needs for family carers, together with
workplace and community understanding. All carers need to be valued, and evidence
suggests that comprehensive, multidimensional dementia-specific training is of benefit.
THE DIMENSIONS OF CARE PROVIDED TO AUSTRALIANS WITH
DEMENTIA IN 2008
5.1.1
There are four distinct types of people who care for people with dementia:
(1) informal (unpaid) carers providing care usually for a close family member;
formal (paid) care staff providing care:
3
3
(2) in the community; or
(3) in residential aged care facilities (RACFs); and
(4) volunteers providing unpaid care associated with formal care services – residential
aged care (RAC), Home and Community Care (HACC), Community Aged Care
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Making choices: future dementia care
Packages (CACPs) and Extended Aged Care at Home (EACH) including the EACH
packages tailored for people with dementia (EACH-D).
Family carers may be the only source of care for some people with dementia (around 37% of
people with dementia in 2008). In 2008, people with dementia received around 203 million
hours of informal care from family carers, at an estimated cost per annum per person of
$33,367 using replacement valuation and $5,323 using opportunity cost valuation. The
productivity loss using the former approach and an average hourly valuation rate of $27.15
amounts to $5.5 billion per annum, while the latter approach amounts to $881 million per
annum. Only the opportunity cost method can be thought of as being borne by business,
individuals and government (in lost taxation revenue). The replacement valuation can be
thought of as the cost of replacing the family carers with paid carers. Using either method,
the cost includes only the carer’s personal time component and does not include
supplementary outsourced care or other support services, capital components (eg, building
depreciation, equipment or home modifications) or other cost inputs (eg, incontinence pads,
alarms, and so on). In 2008 there were an estimated 165,538 people providing informal care
to people with dementia.
The 63% of people with dementia who received formal care were cared for by 84,000 formal
(paid) FTE staff. Each person with dementia received around 1,012 hours of formal care.
Most formal care staff worked in RACFs (around 78,000 FTEs cared for the 90,200
people with dementia living in RAC).
The other paid formal care staff (5,855 FTEs) cared for 52,000 people with dementia
living in the community and receiving formal care.
In addition, volunteers provided up to 8.4 million hours of unpaid formal care in 2008.
Around 2,174 FTE volunteers contributed 3.73 million hours of care for people with
dementia in RACFs (41 hours per person with dementia in RAC).
Around 2,695 FTE staff, the vast majority of whom were volunteers,52 provided
4.63 million hours of care to people with dementia in the community who received
HACC, CACP, EACH and EACH-D (89 hours per person with dementia receiving
formal community care).
52
Given differences in staffing and delivery arrangements across community care organisations, it is not possible
to estimate the split between volunteers and paid staff in community care. These volunteers represent people
providing meals on wheels, transport trips and linen deliveries. Only the last is mainly commercial.
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Making choices: future dementia care
TABLE 5–1: PROVISION OF FORMAL (PAID) CARE TO PEOPLE WITH DEMENTIA (A)(B)(C), 2008
Residential location
People with
dementia (%)
Hours of
formal (paid)
care
Formal
(paid)
FTEs
Hours of
formal care
per pwd
Formal
FTEs per
pwd
Living in the community
with no assistance
85,125(37)
0
0
0
0.0
Living in the community
with HACC
41,399(18)
1,615,567
941
39
0.0
Living in the community
with CACP
7,291(3)
4,996,045
2,909
685
0.4
Living in the community
with EACH, EACH-D
3,368(2)
3,444,237
2,005
1,023
0.6
Living in RAC (RCS 5-8)
15,061(7)
20,408,293
11,882
1,355
0.8
Living in RAC (RCS1-4)
75,107(33)
113,531,075
66,099
1,512
0.9
143,995,217
83,835
Total
227,350(100)
1,012(d)
0.6(d)
(a) FTE based on 38 hours per week, adjusted for recreation leave, sick leave and long service leave. (b) Based
on an average of ANHECA and Bentley’s MRI estimates for high care RAC. (c) Excludes a large number of
HACC, CACP, EACH and EACH-D services provided to people with dementia living in the community such as
meals, linen deliveries and transport trips, as these are not measured in hours. (d) Averages calculated only for
people receiving formal care.
Source: Access Economics calculations.
Valuing these formal sector community care hours at the replacement valuation level ($27.15
per hour) suggests that the total cost per annum was $272.8 million in 2008, which
triangulates well with the published government data on the actual costs; this provides a low
estimate of $248.6 million and a high estimate of $288.1 million. Valuing the RAC services
using top-down and bottom-up estimates from published data sources provides estimates of
$3.6 billion and $5.1 billion respectively.
If volunteer hours are valued at the opportunity cost of family carers, they are worth
$16.2 million and $20.1 million and respectively. The table below provides a summary.
TABLE 5–2: PROVISION OF FORMAL (PAID) CARE TO PEOPLE WITH DEMENTIA (A)(B)(C)
Type of care
m hours
$m pa (low)
$m pa (high)
Informal care
Community care (paid)
Community care volunteers
RAC
RAC volunteers
203.4
10.0
4.6
133.9
3.7
881.2
248.6
20.1
3,641.0
16.2
5,523.5
288.1
20.1
5,064.3
16.2
Total
355.8
4,807.0
10,912.1
The analysis here suggests 60.3% of people with dementia (137,182) are living in the
community in 2008. This is lower than internationally but slightly higher than earlier
Australian estimates, which may reflect a trend increase in the number of people with
dementia living in the community over time.
5.1.2
FUTURE PROJECTIONS – CORE ISSUES
Threshold issues for modelling future projections of dementia carer supply and demand
included:
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Making choices: future dementia care
estimates of the numbers of people with dementia in the future, which were based on
previous Access Economics projections in turn from international and Australian
epidemiological literature;
whether care types are complements or substitutes, where it was concluded that there
is a complex interdependent relationship between informal care and formal care
services – they can occur simultaneously or can precede each other, and can
complement or substitute for each other;
what types of care do people with dementia and their families prefer? On this question,
while consumer-directed care (CDC) strategies are gaining popularity as they have the
potential to encourage a more efficient allocation of resources, key inputs are adequate
access to information about service and provider options and seeking the views of
consumers regarding their preferences. To this end, Access Economics developed a
survey to determine the preferences for attributes of community care and residential
care in order to determine what characteristics of care are valued the most, utilising a
choice modelling experiment (also known as a discrete choice experiment).
5.1.3
SURVEY METHODS AND FINDINGS
A web based survey was implemented that allowed respondents to take their time in
comparing attribute service levels across alternatives when making their most preferred
choice. Respondents were sourced using three means – pamphlets directing people to the
Internet survey that were given out to people visiting Dementia and Memory Community
centres, a link to the survey on the Alzheimer’s Australia web page, and the use of a
database of randomly selected individuals from Pureprofile, a private Internet surveying
company. Of the sample (n=564), 54% were currently providing dementia care and 46% had
done so previously. The sample distribution (in terms of age, gender, ethnicity, jurisdiction
and regionality) appeared to adequately reflect the population of dementia carers as
estimated from other sources. To determine the attributes and levels for formal community
care and residential care services, a literature review was initially used together with
consultation with Alzheimer’s Australia and the dementia care National Consumer Committee
(NCC).
Of informal dementia carers, 42% responded they were in some way compelled to undertake
care. These carers provided 24 hours per week of care on average, although the distribution
was bimodal – with nearly 20% of carers providing 0-4 hours and nearly 20% providing over
55 hours per week. Carers provided a wide range of services, with a negative impact on:
physical health in 31% of respondents;
mental health and emotional wellbeing in 53%; and on
lifestyle (in terms of reduced time for other activities) in 55%.
There were also negative impacts on work and finances. Around 20% of respondents had to
take leave of absence from work to provide care, around 13% had to permanently reduce
their work load, while around 8% of respondents had to stop work altogether in order to
provide care. Around 83% of respondents provide financial support to the person with
dementia – 6% providing more than $200/week and 43% providing more than $50/week.
The choice between different care options (informal, formal community care, and residential
care) made by the family carer and the person with dementia was complicated. A conditional
logit model was used to analyse the choices made by respondents in the community care
and residential care discrete choice experiments, to determine the most valued attribute
within care and to rank care attributes from most valued to least valued.
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Making choices: future dementia care
In the community:
Respite care services available daily and for extended periods of time were valued
highest; a care option including this attribute would have 48% higher demand than one
that did not include respite.
Home support services (such as respite care, shopping, transport and cleaning) were
also found to be valuable; the increase in demand for a care option with home support
once a fortnight compared to one with no home support was around 39%.
A community centre that offers counselling, recreational activities, education and
information services during the working week and on weekends would have 31%
higher demand than when a community centre was not available.
Dementia care case workers were also valued: a care option with a case worker that
can develop an individual care program and organise community care services will
have around 24% more demand than one that does not have a case worker available.
Less valued but still significant were helpline services, emotional support services and
home visits from a qualified specialised support person.
The importance of home support services and respite services is consistent with the finding
that most carers want to keep the person with dementia out of residential care for as long as
possible.
In residential care:
A private room and bathroom were most highly valued, with over 50% higher demand
than an option without these facilities, and a willingness to pay (WTP) $49.50/week for
this attribute.
Skilled RAC workers specialised in providing dementia care was next most highly
valued, with 46% higher demand compared to minimum legal standards of care and a
WTP $41.80/week.
The ability to accommodate cultural and recreational needs on an individual basis was
also valued, with 30% higher demand compared to these needs unable to be met and
a WTP $30.00/week.
Distance from the family carer was next most important, with 25% higher demand for a
facility 10 minutes away compared to one 90 minutes away, and a WTP $26.20/week.
Almost identical in preference was the capacity of the service to accommodate all
stages of dementia, which also generated 25% higher demand than one requiring a
move, with a WTP $22.50/week.
Less important were the visiting hours (WTP $20.10/week preferred for 7am to 10pm
compared to 8am-11am plus 5pm-8pm) and bond amount, although the latter effect
was somewhat inconsistent – possibly influenced by the fact that all the bond options
would typically require a person to sell their home or an asset of similar value in order
to finance the bond.
5.1.4
MODELLING RESULTS
An economic model was built in Excel 2007 with two ‘modules’ – the first module quantifying
future requirements for the different types of dementia care (demand for care) and the
second module quantifying the future supply of each different type of care over time. The
model reports separately on informal care (alone), HACC, CACP, EACH (including EACH-D)
and high and low care provided in residential facilities.
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Making choices: future dementia care
In the base case, demographic change alone (population ageing) will lead to shortages in the
supply of key types of care for people with dementia — in particular — shortages of informal
care and high care RAC, with lesser shortages for EACH/EACH-D and low care RAC. As
modelled, excess supply of HACC and CACP may emerge over time. Notably, since informal
care and community care have complementary characteristics, a shortage of informal care
exacerbates the demand pressure on RAC facilities.
Scenario analysis shows that an increase in demand for community based care in preference
to RAC (Scenario A) would ameliorate the shortage in RAC (although not eliminate it), but at
the same time would further exacerbate the shortage in informal care and EACH/EACH-D.
However, if trends in other important drivers in the demand and supply of care for people
with dementia continue — that is, increases in the desire of women to participate in the
labour force (Scenario B) and increases in the proportion of people living alone (Scenario C),
the shortage in RAC will become even worse.
TABLE 5–3: BASE CASE PROJECTIONS OF GAP BETWEEN DEMAND AND SUPPLY BY CARE TYPE
(HOURS PER PWD PER WEEK)
1.0
Hours of care per pwd per week
0.0
-1.0
-2.0
Informal care
-3.0
HACC
CACP
-4.0
EACH and EACH D
RAC Low
RAC High
-5.0
-6.0
-7.0
2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029
Year
pwd = people with dementia
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Making choices: future dementia care
TABLE 5–4: SCENARIO IMPACTS ON CARE HOURS DEMANDED AND SUPPLIED
Base
case
Scenario A:
higher %
pwd in
community
Scenario B:
higher %
female
labour
participation
Scenario C:
higher %
people
living alone
2008
2029
2029
2029
2029
Informal care hours (‘000)
Hours per pwd per week
0
-161,911
-6.58
-164,381
-6.68
-167,669
-6.82
-161,911
-6.58
HACC care hours (‘000)
Hours per pwd per week
FTEs(b)
9
142
0.01
82
142
0.01
82
596
0.02
347
142
0.01
82
CACP care hours (‘000)
Hours per pwd per week
FTEs(b)
0
410
0.02
239
166
0.01
96
510
0.02
297
432
0.02
251
0
-192
-0.01
-112
-1,626
-0.07
-946
-180
-0.01
-105
-175
-0.01
-102
RAC low care hours (‘000)
Hours per pwd per week
FTEs(b)
0
-9,003
-0.37
-5,242
-8,520
-0.35
-4,960
-9,675
-0.39
-5,633
-9.046
-0.37
-5,267
RAC high care hours (‘000)
Hours per pwd per week
FTEs(b)
0
-92,499
-3.76
-53,854
-89,758
-3.65
-52,258
-96,430
-3.92
-56,472
-92,533
-3.76
-53,873
EACH/EACH-D care hours
(‘000)
Hours per pwd per week
FTEs(b)
(a) Note that a negative number signifies excess demand and a positive number signifies excess supply.
(b) FTEs calculated based on 38 hour week and 45.2 week year (see Chapter 2).
Source: Access Economics model built for this project.
5.1.5
ISSUES AND CHALLENGES
The projections, together with the survey findings and literature review, highlight various
issues and challenges for Australia in caring for people with dementia in coming decades.
Consumer preferences: This research suggests that the current preference is for more
RAC services rather than more formal community care services, since the largest gaps are
evident between demand and supply in RAC. If community care could be made more
desirable – eg, through better packages of options in line with consumer preferences, this
would ameliorate the shortage in RAC (although not eliminate it), but community care
services would need to be expanded at the high-care end of the spectrum.
Cost-effectiveness: Formal care services are more expensive options in hourly rate terms,
however. Although not controlled for severity of the person cared for, on average, informal
care costs $4.33 per hour (opportunity cost) relative to the formal cost of community care
estimated at $27.15 per hour. Moreover, in RAC facilities, costs per hour of care average
somewhere between $27.19 per hour (low estimate) and $37.81 per hour (high estimate).
ACAT processes: There is also a need to review whether there is sufficient awareness of
ACAT processes, support for people receiving particular ACAT recommendations and
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Making choices: future dementia care
satisfaction with ACAT decision making, with an emphasis on understanding consumer
preferences.
Rethinking capital expenditures: Due to ageing, the share of the population with dementia
is increasing in those aged 70 years and older, but planning ratios for RAC places are based
only on the total 70+ growth rates. This implies planning ratios need to increase or be
redefined, with more emphasis on dementia-specific aspects (including facility design,
appropriate respite services from RAC facilities or separate day facilities). There is also a
need in financial planning to cater for the capital needs of community care (eg, home
modifications and equipment).
New private financing mechanisms: The current system for co-financing aged care
includes mean-tested bonds in low-level RAC and accommodation charges in high level
RAC, fee structures for HACC, CACP, EACH and EACH-D, and Carer Payment and Carer
Allowance (currently being reviewed). The current levels of government support for these
services are unlikely to be able to be continued in future as needs burgeon. It will become
increasingly important for people with the capacity to pay (through accumulated household
wealth) to do so, allowing the government to continue to provide a safety net for those
without the financial means to cover their dementia care costs. Dedicated Healthy Ageing
Savings Accounts (HASAs) for aged care must be additional to superannuation since
otherwise people (who can afford to) have incentives to spend their retirement incomes on
less essential goods and services (eg, leisure, travel) and fall back on public safety nets
rather than provisioning for their needs. This moral hazard underpins the need for a parallel,
complementary saving mechanism.
Workplace options: Reliance on females aged 45-64 years to provide informal care is likely
to have an increasing toll on productivity (and health outcomes) in this cohort. The
productivity of the informal and formal caring workforce can be improved by increasing the
capital to labour ratio and improving the skills and knowledge of carers.
While there are promising and valuable programs providing information and training for
formal carers of people with dementia, education packages are not offered consistently
to all formal carers (including GPs) Australia-wide, and access is limited depending on
the worker’s background (eg, health professional or other occupation) and geographic
area. The key source of assistance and training for family carers remains Alzheimer’s
Australia.
Awareness of and training in dementia specific care by broader respite and support
services and community organisations is a vital component, together with transport
assistance for carers, without which access to respite will be unnecessarily
constrained. It is not clear to what extent new respite service initiatives are suitable for,
or accessed by, people with dementia. Taskforce on Care Costs (2007) concluded that:
3
3
the current system of support for carers is fragmented and there is a clear need
for a ‘one-stop shop’ for carers, linked to all organisations offering support
services; and
the strategies which would most assist carers to balance their work and caring
responsibilities are (i) improved access to support services (ii) greater workplace
flexibility and (iii) improved quality of support services.
Special needs groups include Indigenous Australians, culturally and linguistically diverse
(CALD) Australians and people living outside metropolitan areas.
(Poor quality) data imply there is a shortage of formal dementia care for Indigenous
Australians and a substantial need for training among non-Indigenous people regarding
culturally appropriate care.
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Making choices: future dementia care
CALD people with dementia are likely to access services later and there may be
cultural sensitivities regarding institutionalisation, with consequent over-representation
of CALD groups in formal community care programs.
In regional areas, formal care services cost more to provide, placing higher burden on
family carers and/or requiring a locational move.
5.2
IMPLICATIONS AND STRATEGIES
The 2005 Australian Government Dementia National health Priority Initiative provided
$320.6 million over five years to support research into care and early intervention, additional
EACH places (the EACH-D program) and dementia specific training for carers of people with
dementia. The Initiative recognised the significant and increasing emotional, social, and
financial burden of dementia. A National Evaluation is currently underway with a view to
informing the direction of the Dementia Initiative and future Australian Government initiatives.
5.2.1
STRATEGIES TO PREVENT OR DELAY DEMENTIA ONSET
The projections of dementia prevalence presented in Section 3.1 are based on a continuation
of the current epidemiological prevalence rates in each age and gender group. Although the
aetiology of dementia is still not well understood, risk factors apart from age include family
history (genetics), female gender (for some dementia types) and possibly lower education or
environmental/occupational exposures.53 (Access Economics, 2005a). Importantly,
cardiovascular risk factors, stroke-related and atherogenic causes contribute to vascular
dementia and there is increasing evidence that they also contribute to Alzheimer’s disease.
These include high blood pressure (severe systolic hypertension), narrowing of the arteries
(atherosclerosis), irregular heartbeat (atrial fibrillation), ischaemic (coronary) heart disease
and attacks (myocardial infarction), diabetes, smoking, high saturated fat and low-density
lipoprotein cholesterol intake. Coronary artery bypass graft surgery may also contribute to
vascular dementia. Protective factors may include diet (antioxidants, fish, moderate wine
consumption and Gingko biloba), use of some pharmacotherapies (eg, non-steroidal antiinflammatory drugs (NSAIDs) – and statins, the most widely used cholesterol-lowering drugs.
Thus, although there is no cure, there are ways to reduce risk factors – especially the
cardiovascular risk factors – and hence reduce its incidence and prevalence. Prevention
includes elimination or postponement of onset till later in life by addressing contributing
medical or psychological factors, such as head trauma or cardiovascular disease and its risk
factors (smoking, diet, physical activity, overweight and obesity, hypertension, high
cholesterol). Although there is now ample evidence that lifestyle and health interventions
can reduce the risk or delay onset of dementia, there is limited awareness of this among
Australians, with 48% not knowing that lifestyle behaviours directly affect their risk of
dementia (Farrow, 2008).
Recent developments in neuroscience, genetic and medical technology suggest that
prevention in terms of slowing the progression of dementia is possible, although there is a
need for further research and, in particular, large randomised prevention trials.
Alzheimer's Australia has developed a (Trust funded) evidence-based dementia risk
reduction program called Mind your Mind® (Woodward et al, 2007). It promotes a ‘brain
53
Other possible risk factors include depression, diabetes, high levels of homocysteine (an amino acid) in blood,
previous thyroid diseases, head trauma (eg, from motor vehicle accidents or boxing) and excessive alcohol
intake. There has been some evidence of lower prevalence rates for Alzheimer’s disease in some developing
countries and in rural areas, although the evidence regarding ethnic and cultural influences is unclear.
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Making choices: future dementia care
healthy’ lifestyle, addressing the benefits of mental, physical and social activity, a healthy
diet, avoiding head injury, not smoking, not drinking excessively, and maintaining healthy
blood pressure, cholesterol and weight. That program now requires Government preventative
health funding to be taken to the wider Australian population.
Dementia research remains underfunded in relation to cardiovascular and cancer research
(Brodaty et al, 2008). Yet there is scope for huge savings from investment in research for
cause, prevention and care (Access Economics, 2003). If any of these or other future
prevention strategies could delay the onset of dementia even modestly, the total years of
disabled life may be significantly reduced, with associated substantial public health resource
allocation implications (Access Economics, 2004). Moreover, this report underscores the
need for further research in relation to optimal CDC initiatives.
In addition, early diagnosis may reduce overall costs and burden associated with dementia
care. Improved diagnosis is now possible through new neuroimaging technologies54. Early
diagnosis means the person and the family benefit from drug treatments, support and
planning strategies. This helps those involved have more control over the disease and their
lives and can slow progression due to early access to pharmacotherapies. Financial and
legal plans can be made, with the full agreement of the person with dementia. The individual
and family can adjust better to the diagnosis, understand the illness and learn how to cope
better through adequate counselling and education, remaining productive longer and
improving quality of life. This can reduce carer stress and enhance informal care supply,
which would help alleviate the shortfalls identified in the modelling.
5.2.2
STRATEGIES TO PROVIDE GREATER CHOICE FOR FAMILY CARERS
This research suggests that the current preference is for more RAC services rather than
more formal community care services, since the largest gaps are evident between demand
and supply in RAC. If community care could be made more desirable – eg, through better
packages of options in line with consumer preferences, the Scenario A modelling suggested
this would ameliorate the shortage in RAC (although not eliminate it), but community care
services would need to be expanded at the high-care end of the spectrum.
The survey also identified also a need to review whether there is sufficient awareness of
ACAT processes, support for people receiving particular ACAT recommendations and
satisfaction with ACAT decision making, with an emphasis on understanding consumer
preferences.
Ultimately, it will be important to expand consumer choices based on research – such as the
discrete choice modelling used in this research project – on the views of Australian
consumers and whether they have an interest in more consumer directed care, including
options such as:
providing cash, vouchers or budgets in place of the current packages that can be used
for the services of the person’s choice;
giving people with dementia and their carers genuine choice between residential and at
home care – between residential low care and high care and CACPs and Dementia
EACH/ respectively; and
54
For example, the Australian Imaging, Biomarkers and Lifestyle (AIBL) Flagship Study of Ageing has
demonstrated that a neuro-imaging scan called PiB PET can be used to identify people who will develop
Alzheimer’s disease up to 18 months earlier than currently available diagnostics.
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Making choices: future dementia care
allowing carers to choose how ‘brokerage’ funds are spent for respite.
While consumer-directed strategies are gaining popularity as they have the potential to
encourage a more efficient allocation of resources, key inputs are adequate access to
information about service and provider options and seeking the views of consumers
regarding their preferences.
5.2.3
STRATEGIES TO ENHANCE FORMAL COMMUNITY SERVICES
Support, counselling, education and memory loss programs through all stages of dementia
progression also enhancing informal care supply, which helps relieve the excess demand
modelled. Psycho-education can help the person and their family carer learn to manage
certain symptoms – such as cognitive behaviour therapy – and can help prevent secondary
morbidity such as depression or anxiety in the person with dementia and/or their family
members.
The survey found that family carers are well able to rank their preferences in relation to the
attributes of community care services that they most value.
Home support services (such as shopping, transport and cleaning) were valued
highest; the increase in demand for a care option with home support twice a week
compared to one with no home support was around 55%.
Respite care services available daily and for extended periods of time were also valued
highly; a care option including this attribute would have 48% higher demand than one
that did not include respite.
A community centre that offers counselling, recreational activities, education and
information services during the working week and on weekends would have 31%
higher demand than when a community centre was not available.
Dementia care case workers were also valued: a care option with a case worker that
can develop an individual care program and organise community care services will
have around 24% more demand than one that does not have a case worker available.
Less valued but still significant were helpline services, emotional support services and
home visits from a qualified specialised support person.
5.2.4
STRATEGIES TO ENHANCE RAC SERVICES
The survey also found that family carers are well able to rank their preferences in relation to
the attributes of residential care services that they most value, and place consistent values
on what they are willing to pay (WTP) for these attributes.
A private room and bathroom were most highly valued, with over 50% higher demand
than an option without these facilities, and a WTP $49.50/week for this attribute.
Skilled RAC workers specialised in providing dementia care was next most highly
valued, with 46% higher demand compared to minimum legal standards of care and a
WTP $41.80/week.
The ability to accommodate cultural and recreational needs on an individual basis was
also valued, with 30% higher demand compared to these needs unable to be met and
a WTP $30.00/week.
Distance from the family carer was next most important, with 25% higher demand for a
facility 10 minutes away compared to one 90 minutes away, and a WTP $26.20/week.
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Making choices: future dementia care
Almost identical in preference was the capacity of the service to accommodate all
stages of dementia, which also generated 25% higher demand than one requiring a
move, with a WTP $22.50/week.
Less important were the visiting hours (WTP $20.10/week preferred for 7am to 10pm
compared to 8am-11am plus 5pm-8pm) and bond amount, although the latter effect
was somewhat inconsistent – possibly influenced by the fact that all the bond options
would typically require a person to sell their home or an asset of similar value in order
to finance the bond.
5.2.5
FINANCIAL PROVISIONING
Rethinking capital expenditures: Due to ageing, the share of the population with dementia
is increasing in those aged 70 years and older, but planning ratios for RAC places are based
only on the total 70+ growth rates. This implies planning ratios need to increase or be
redefined, with more emphasis on dementia-specific aspects (including facility design,
appropriate respite services from RAC facilities or separate day facilities). There is also a
need in financial planning to cater for the capital needs of community care (eg, home
modifications and equipment).
New private financing mechanisms: The current system for co-financing aged care
includes mean-tested bonds in low-level RAC and accommodation charges in high level
RAC, fee structures for HACC, CACP, EACH and EACH-D, and Carer Payment and Carer
Allowance (currently being reviewed). The current levels of government support for these
services are unlikely to be able to be continued in future as needs burgeon. It will become
increasingly important for people with the capacity to pay (through accumulated household
wealth) to do so, allowing the government to continue to provide a safety net for those
without the financial means to cover their dementia care costs. Dedicated HASAs for aged
care must be additional to superannuation since otherwise people (who can afford to) have
incentives to spend their retirement incomes on less essential goods and services (eg,
leisure, travel) and fall back on public safety nets rather than provisioning for their needs.
This moral hazard underpins the need for a parallel, complementary saving mechanism.
5.2.6
WORKPLACE INITIATIVES
Reliance on females aged 45-64 years to provide informal care is likely to have an increasing
toll on productivity (and health outcomes) in this cohort. The productivity of the informal and
formal caring workforce can be improved by increasing the capital to labour ratio and
improving the skills and knowledge of carers (see box next page).
While there are promising and valuable programs providing information and training for
formal carers of people with dementia, education packages are not offered consistently
to all formal carers (including GPs) Australia-wide, and access is limited depending on
the worker’s background (for example, health professional or other occupation) and
geographic area. The key source of assistance and training for family carers remains
Alzheimer’s Australia.
Awareness of and training in dementia specific care by broader respite and support
services and community organisations is a vital component, together with transport
assistance for carers, without which access to respite will be unnecessarily
constrained. It is not clear to what extent new respite service initiatives are suitable for,
or accessed by, people with dementia. TOCC (2007) concluded that:
3
the current system of support for carers is fragmented and there is a clear need
for a ‘one-stop shop’ for carers, linked to all organisations offering support
services;
143
Making choices: future dementia care
3
3
the strategies which would most assist carers to balance their work and caring
responsibilities are (i) improved access to support services (ii) greater workplace
flexibility and (iii) improved quality of support services; and
options to this end include paid and unpaid carer leave entitlements (including
converting sick leave to carer leave), awareness and potentially financial
incentives to employers to assist in introducing flexible work practices for carers
and innovations such as work-based aged care.
Promoting an understanding of what is quality dementia care; features of
quality person-centred care (Rosewarne et al, 1997) include the need to:
redefine problems and understand behaviours of people with dementia – ie,
focus on the person and not just target the behaviours;
plan and implement specialised activity programs – to stimulate interest and
encourage activities designed to address specific psychosocial needs and
preferences;
personalise the care – emphasising intimate knowledge of who the person is –
their history, family connections, values and current circumstances;
give carers ownership and care responsibility – build relationships by subdividing
large numbers of care recipients into small working groups, for whom designated
carers are responsible;
create domestically scaled social environments – clustered residential designs,
with kitchen-dining focus areas, have been successful in creating a homelike
environment and building social interactions in residential care services;
provide flexibility of care routines and practices – a relaxed organisational
environment using strategies that focus on timing, routines and needs, preventing
resistive responses;
cultivate professionalism of care and support of carers – create a culture of doing
something innovative, progressive and worthwhile, rather than a task-oriented
‘completion of jobs’ approach;
include relatives in the life and care of the resident – expend effort to maintain
continuity in the person’s life through encouraging ongoing contact with family
and others who can provide undivided personal attention.
5.2.7
SPECIAL NEEDS
Special needs groups include Indigenous Australians, CALD Australians and people living
outside metropolitan areas. It will be increasingly important to improve community education,
raise awareness of dementia and adopt linguistically and culturally sensitive screening tools,
with carer assistance and support requiring knowledge of communities and needs at a local
level.
(Poor quality) data imply there is a shortage of formal dementia care for Indigenous
Australians and a substantial need for training among non-Indigenous people regarding
culturally appropriate care.
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Making choices: future dementia care
Younger people with dementia have a particular need for timely, accurate diagnosis
and, because they are at a different stage in life (eg, still in paid work or with young
children to provide for), services that are tailored to these specific needs are crucial in
providing quality of life.
CALD people with dementia are likely to access services later and there may be
cultural sensitivities regarding institutionalisation, with consequent over-representation
of CALD groups in formal community care programs.
Tailored services for people with dementia and BPSD need to be more
comprehensively integrated into community, residential care and hospital settings,
given their high prevalence, with clear lines of responsibility and specialised facilities
distributed equitably (especially in rural and remote areas).
In regional areas, formal care services cost more to provide, placing higher burden on
family carers and/or requiring a locational move.
5.3
RECOMMENDATIONS
It is recommended that eight major issues need to be addressed.
i)
Planning aged care and dementia services
Due to ageing, the share of the population with dementia is increasing in those aged 70
years and older, but planning ratios for RAC and community care packages places are based
only on the total 70+ growth rates. This implies planning ratios need to increase or be
redefined, with more emphasis on dementia-specific aspects (including facility design,
appropriate respite services from RAC facilities or separate day facilities). There is also a
need in financial planning to cater for the capital needs of community care (eg, home
modifications and equipment). It is recommended that:
ii)
the planning ratios for aged care be reviewed and consideration given to establishing
as part of the ratio the provision needed for dementia specific community and
residential care services.
The balance of community and residential care services
This report suggests that consumers value choice in their residential and community care
options. In economic terms there is an argument for consumer sovereignty, recognising that
consumers should be better positioned to determine the care they need in respect of their
own individual circumstances.
If community care services are to be more attractive to consumers there is a need to
restructure and reform community care so that care is available to respond to the range of
needs, without inflexible boundaries. There is a need also to introduce consumer-directed
models of care in the delivery of care packages and respite care to enable those people with
dementia and their carers who wish to do so to determine the services that would meet their
needs either through cash or individual budgets. It is recommended that:
consumer-directed models of care should be introduced to empower consumers who
wish to do so to make choices in the mix of community care and residential care
services that would best meet their needs including through cash options and individual
budgets managed by agencies;
community care be reformed so that care is calibrated to respond to the range of
needs: and,
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Making choices: future dementia care
iii)
community (including EACH –D packages) and residential care services for people with
dementia should be adequately increased to meet projected community demand, with
enhanced consumer choice in tailoring services and ongoing consumer consultation.
Information and consumer support
The survey work in this report demonstrates the complexity of the choices that consumers
make. It also demonstrates the need for consumers to be well informed to make choices,
including through Aged Care Assessment Teams and organisations such as Alzheimer's
Australia, including their National Dementia Support Program (NDSP).55 The ACAT role is
critical in ensuring that people with dementia are properly assessed and their families and
carers receive appropriate advice in terms of future care. It is recommended that:
access to information and carer support should be enhanced and expanded through
the National Dementia Support Program and the Commonwealth Respite and Carelink
Centres; and,
consumer awareness and satisfaction with ACATs is reviewed.
iv)
Quality dementia care
There is an important emphasis in the Dementia Initiative on training. The survey findings in
this report support that priority and for building on it in the next five years. Currently,
dementia specific training options are available at the Certificate IV and Diploma level while
the Dementia Collaborative Research Centres promote a focus on knowledge transfer so
that research evidence is translated into practice. The Dementia Training Study Centres
develop pathways that provide career opportunities and training for those with a commitment
to dementia care. It is recommended that:
the consistency and coverage of dementia skills training is improved by extending
access to dementia training for formal and family carers, promoting pervasive
understanding of quality person-centred dementia care, and monitoring outcomes: and,
the delivery of Certificate IV and Diploma in Dementia Practice is increased to create
dementia care specialists in the workplace.
v)
Workforce options for carers
Reliance on females aged 45-64 years to provide informal care is likely to have an increasing
toll on productivity (and health outcomes) in this cohort. The productivity of the informal and
formal caring workforce can be improved by increasing the capital to labour ratio and
improving the skills and knowledge of carers. It is recommended that the action that would
most assist carers to balance their work and caring responsibilities are:
improved access to long day respite care (potentially through greater prioritisation of
dementia respite services in the National Carers Respite Program); and
greater workplace flexibility.
vi)
Special needs groups
55
The NDSP provides a national approach to the provision of information, awareness and core support services,
including counselling, support groups, education for carers and Living With Memory Loss Programs. Other
agencies play an important role, including the Commonwealth Respite Carelink Centres.
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Making choices: future dementia care
There are five groups that are particularly disadvantaged in access to dementia care
services. It is recommended that action is taken to give a higher priority to the provision of
dementia services to:
younger people with dementia;
Indigenous people;
people from Culturally and Linguistically Diverse backgrounds;
those with dementia and psychiatric issues who fall between the aged care and mental
health systems; and
those in rural and remote areas.
vii)
Research
The potential for reducing dementia incidence, prevalence and disability burden of dementia
in the longer term will be dependent on research and dementia risk reduction. Available
evidence suggests dementia research is under-resourced in comparison to other chronic
diseases and that there are huge potential savings from investment in research that results in
delay in the onset of dementia. There is no acknowledgement in government health
prevention policies of the potential for dementia risk reduction or the links between dementia
and other chronic diseases such as vascular disease and diabetes. It is recommended that:
investment in dementia research and prevention should continue to be expanded; and
awareness of dementia risk reduction is promoted eg, through the Mind your Mind
program.
viii)
Develop new financing mechanisms
The current system for co-financing aged care includes mean-tested bonds in low-level RAC
and accommodation charges in high level RAC, fee structures for HACC, CACP, EACH and
EACH-D, and Carer Payment and Carer Allowance (currently being reviewed). The current
levels of government support for these services are unlikely to be able to be continued in
future as needs burgeon. It will become increasingly important for people with the capacity
to pay (through accumulated household wealth) to do so, allowing the government to
continue to provide a safety net for those without the financial means to cover their dementia
care costs. A parallel, complementary savings mechanism would overcome the moral
hazard in the current superannuation and insurance modesl, since currently people who can
afford to have incentives to spend their retirement incomes on less essential goods and
services (eg, leisure, travel) and fall back on public safety nets rather than provisioning for
their needs. It is recommended that:
dedicated Healthy Ageing Savings Accounts (HASAs) for aged care are introduced that
are additional to superannuation.
147
Making choices: future dementia care
APPENDIX A – CONDITIONAL LOGIT MODEL
The model used to analyse respondents’ choices within the community care experiment and
residential care experiment is based on random utility theory. Although individuals make their
choices based on the levels of the attributes for all alternatives, there is a random component
in measuring their choices, either because the researcher cannot observe characteristics that
impact their decision to choose, or there is randomness in respondent preferences. The
utility function for respondent i for alternative j can therefore be specified as:
Uij = Vij + εij
where Vij is the non stochastic (explainable) component of utility and εij is the error term (or
random component across individuals and alternatives). The probability that respondent i
chooses option j within scenario s is the probability that the expected utility derived from
option j is greater than all other options within option s.
Pijs = (Vijs + εijs > Viks + εiks for all j≠k)
The difference in utility between the chosen alternative and all other alternatives is
unobservable, so y is an indicator for the event Pr(yis=j). The law governing the probability of
choosing an alternative can therefore be represented by:
P ( y is = j | x, β ) = F ( x, β )
Assuming that utility is a linear function of the attributes of community and residential care,
utility for respondent i choosing option j in scenario s can be represented by:
Uijs = βiXijs + εijs
The coefficient βi is known to the respondent but not to the researcher. If we knew the
individuals tastes, that is, if we knew βi, then the probability of a respondent choosing a given
care scenario could be easily calculated. However because we do not know the individual
tastes of respondents, as tastes vary in the population with a density denoted f(β|θ)56, it has
been assumed that the value of βi takes the value of β. That is, the impact of attributes on the
probability of choosing a community care option or residential care option is the same for all
respondents.
Different assumptions about the distribution of the error term will lead to different choice
models. In this study, it has been assumed that the error terms are independently and
identically distributed (i.i.d) extreme value (which is also known as a type I extreme value or
Gumbel distribution). The density and cumulative distribution function of the error term for
individual i choosing alternative j can be represented by:
f (ε ni ) = e −ε ni e −e
−ε ni
( − εni )
F (ε ni ) = e( −e
)
56
Where θ are the parameters of the distribution, for example the mean and standard deviation of the taste
parameters in the population of households.
148
Making choices: future dementia care
This gives rise to the standard conditional logit model (McFadden, 1974). The probability that
respondent i chooses alternative j in scenario s can therefore be calculated by:
Pijs =
exp( β ' X ijs )
exp( β ' X ijs ) + exp( β ' X iks )
Within this study the conditional logit model is solved using maximum likelihood estimation.
As a respondent faces a sequence of choice sets, the probability of observing the sequence
of choices made by the respondent can be expressed as the product of the probability of
choosing each alternative (assuming choices are independent). In a two choice situation this
can be represented by:
∏
S
P (Y = y i | x, β ) =
F ( xt ,β )y is [1 − F ( xt , β )]1− y is
t =1
where yi is equal to 1 if the individual chooses alternative i in scenario s and not equal to 1 if
the individual chooses some other alternative.
The benefit of using a conditional logit model is that the choice probabilities are globally
concave in parameters, which makes estimation by maximum likelihood less complicated.
However there are some limitations to the model. Although the conditional logit model can
represent taste variation that relates to observed respondent characteristics, it cannot
represent random taste variation, that is, tastes that cannot be observed. The conditional
logit model also imposes the condition that substitution across alternatives is proportional,
which is a restriction on the cross-elasticities of probabilities. This property is known as
Independence from Irrelevant Alternatives (IIA) and is a concern if the alternatives within the
choice sets are close substitutes. Within this study, it is assumed that the alternatives are
distinct such that the IIA holds. Finally, the conditional logit model treats unobserved factors
that affect choices over alternative and scenarios as being independent such that each
choice by each respondent is treated as a separate observation.
In using the conditional logit model, coefficient estimates are not directly interpretable so do
not provide the same type of information as coefficients from an Ordinary Least Squares
(OLS) model, for example. Regardless, coefficient estimates and their standard errors for the
community care experiment and the residential care experiment are shown in Table A–1 and
Table A–2 respectively.
A more natural way of interpreting results from a conditional logit model is to determine the
impact on the probability of choosing a care option by changing one variable while holding all
others constant. This can be done by determining the probability of choosing between option
A and option B when both options have the same care levels and then changing one attribute
level in one option to predict the impact on the probability of choosing the option that has
experienced the change. For example, by setting all care attributes at their worst care levels
for both options and then changing one level for one attribute (say a change in Home
Support services from ‘not available’ to ‘available once a fortnight’) will provide an estimate
on the probability of choosing the option that has the improved service level and implicitly
provides a value for that level of care. This provides an indication on the demand for each
level of care given the trade-offs in other levels of care that would have to be made.
149
Making choices: future dementia care
TABLE A–1: MODEL RESULTS FROM COMMUNITY CARE EXPERIMENT
Attribute levels
Coefficient
Home Support
Available once a fortnight
Available once a week
Available twice a week
Case Worker
Can develop an individual care program and
organise community care services
Qualified person
Available once a month
Available once a fortnight
Available once a week
Community Centre
Available on weekends only
Available during the working week only
Available during the working week and on
weekends
Helpline
Available during working hours
Available between 7am and 10pm
Available 24 hours a day
Emotional Support
Provided over the phone by a counsellor
Provided through group meetings with a
counsellor at a clinic
Provided by a counsellor at a clinic on an
individual basis
Respite
Available for emergencies/special events only
Available daily but only for part of a day at a time
Available daily and for extended periods of time
(including holidays)
Cost ($ per week)
ASC – Option A
Model diagnostics
Observations
Log Likelihood (null)
Log Likelihood (model)
Degrees of freedom
Akaike Information Criteria
Bayesian Information Criteria
Robust S.E.
0.610
0.697
0.861
0.089*
0.097*
0.086*
0.384
0.049*
0.024
0.210
0.317
0.089
0.097*
0.085*
0.026
0.154
0.483
0.079
0.099
0.077*
0.216
0.270
0.295
0.082*
0.098*
0.088*
0.232
0.275
0.090*
0.098*
0.265
0.083*
0.396
0.559
0.757
0.087*
0.095*
0.085*
-0.006
0.453
0.001*
0.480*
4512
-1563.74
-1338.91
21
2719.81
2854.52
* = significant at 5%
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Making choices: future dementia care
TABLE A–2: MODEL RESULTS FROM RESIDENTIAL CARE EXPERIMENT
Attribute levels
Coefficient
Distance from residential care
60 minutes
30 minutes
10 minutes
Private
Limited private facilities (room only)
Some private facilities (room and bathroom only)
All private facilities (room, bathroom, and
outdoor area)
Cultural background and recreational needs
On special occasions only
On a group basis
On an individual basis
Skills
Specialised in providing dementia care
Capacity
All stages of dementia. The resident will not
have to move locations as the condition
advances
Visiting
Restricted to between 7am and 10pm
Fully flexible but family and friends CANNOT
stay overnight
Fully flexible, but family and friends CAN stay
overnight
Bond
$100,000
$200,000
$300,000
Cost ($ per day)
ASC – Option A
Model diagnostics
Observations
Log Likelihood (null)
Log Likelihood (model)
Degrees of freedom
Akaike Information Criteria
Bayesian Information Criteria
Robust S.E.
0.248
0.301
0.409
0.086*
0.099*
0.085*
0.324
0.823
0.854
0.084*
0.099*
0.081*
0.204
0.290
0.486
0.090*
0.099*
0.086*
0.735
0.050*
0.376
0.050*
0.286
0.146
0.087*
0.097
0.220
0.084*
0.215
0.322
0.136
-0.177
0.418
0.089*
0.098*
0.087
0.027*
0.050*
4512
-1563.74
-1284.11
19
2606.21
2728.09
* = significant at 5%
151
Making choices: future dementia care
APPENDIX B – COMPARING PREFERENCES ACROSS
GROUPS
The results presented in Section 3.1.3 were derived from a pooled sample of respondents
with alternative individual preferences. Consequently, results represent average preferences.
However, preferences for alternative service characteristics will differ across individuals as
each family carer has their own individual needs and wants depending on their own specific
caring situation. In order to gain a greater insight on how preferences differ across different
types of respondents, the sample was split into six groups (sub-samples) and the choices
were re-modelled using the conditional logit model. These groups include:
respondents derived from the Alzheimer’s Australia network (Dementia and Memory
Community Centres and the Alzheimer’s Australia web page link) versus respondents
derived from Pureprofile;
respondents who are current carers versus respondents who were previous carers;
and
respondents who provide 0 to 14 hours of care per week compared to respondents
who provide 15 hours or greater of care per week.
The following tables present the impact on demand from changing service levels (relative to
the base case as presented in the tables) across the six groups mentioned above. They also
show the ratio of the impact of demand between two comparison groups, which has been
calculated by dividing the impact of demand for the first group by the second. This provides
an indication on the relative impact on demand between two groups.
A qualifying remark must be made when comparing results across alternative groups.
Attributing differences in the impact on probability within the following tables to specific subsample characteristics, and drawing solid policy conclusions from these results, may be
problematic. This is because creating a sub-sample based on specific criteria may also
inadvertently lead to other differences in the sub-samples that confound the results. For
example, splitting the sample into Alzheimer’s Australia and Pureprofile respondents
inherently splits the samples into an older and younger demographic, as Pureprofile
respondents were typically younger. Consequently any differences found between two
groups may be due to age rather than their affiliation with the Alzheimer’s Australia network.
Furthermore, it is uncertain whether those sourced through Pureprofile do not have
experience with services offered by Alzheimer’s Australia. Similarly, differences in current
carers versus previous carers may also be due to differences in age rather than their current
caring situation, while differences in the level of care provided may be due to the severity of
the condition, rather than the amount of care being provided.
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Making choices: future dementia care
TABLE A–3: DIFFERENCES IN THE IMPACT ON DEMAND FROM CHANGING SERVICE LEVELS WITHIN THE COMMUNITY CARE EXPERIMENT
Home Support such as shopping,
transport, and cleaning
Not available
Available once a fortnight
Available once a week
Available twice a week
Dementia care case worker
Not available
Can develop an individual care program
and organise care services
Qualified person who can provide
support at home for a specific need
Not available
Available once a month
Available once a fortnight
Available once a week
Community centre that offers
counselling, recreational activities,
education and information services
Not available
Available on weekends only
Available during the working week only
Available during the working week and on
weekends
AA
PP
Ratio
Current
Previous
Ratio
< 15hrs
≥ 15 hrs
Ratio
0.0
51.8*
61.4*
77.5*
0.0
33.0*
36.0*
42.8*
0.0
1.6
1.7
1.8
0.0
41.6*
46.9*
58.3*
0.0
36.5*
41.7*
50.8*
0.0
1.1
1.1
1.1
0.0
39.3*
36.3*
51.0*
0.0
38.8*
44.3*
54.5*
0.0
1.0
0.8
0.9
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
37.5*
17.5*
2.1
26.4*
22.5*
1.2
26.4*
24.2*
1.1
0.0
5.9
15.7
18.8*
0.0
-0.5
12.4**
21.8*
0.0
-11.1
1.3
0.9
0.0
-6.0
1.8
8.6
0.0
8.9
24.6*
31.9*
0.0
-0.7
0.1
0.3
0.0
2.9
8.5
19.3*
0.0
1.5
13.1*
19.9*
0.0
2.0
0.6
1.0
0.0
-1.9
17.7
0.0
4.0
6.0
0.0
-0.5
3.0
0.0
-2.3
11.2
0.0
6.0
7.7
0.0
-0.4
1.5
0.0
-1.5
0.6
0.0
1.6
9.5
0.0
-0.9
0.1
40.6*
25.6*
1.6
34.0*
27.7*
1.2
18.9*
30.6*
0.6
Note: * = significantly different from zero at 5% ** = significantly different from zero at 10%
Continued next page
153
Making choices: future dementia care
TABLE A–4: DIFFERENCES IN THE IMPACT ON DEMAND FROM CHANGING SERVICE LEVELS WITHIN THE COMMUNITY CARE EXPERIMENT CONTINUED
Helpline that can provide advice,
information, and referral to services
Not available
Available during working hours
Available between 7am and 10pm
Available 24 hours a day
Emotional support for those caring for
someone with dementia
Not provided
Provided over the phone by a counsellor
Provided through group meetings with a
counsellor at a clinic
Provided by a counsellor at a clinic on an
individual basis
Respite care
Not available
Available for emergencies/special events
only
Available daily but only for part of a day at
a time
Available daily and for extended periods
of time (including holidays)
No. of observations
Log likelihood (model)
AA
PP
Ratio
Current
Previous
Ratio
< 15hrs
≥ 15 hrs
Ratio
0.0
24.0*
28.5*
26.2*
0.0
8.0
12.5**
16.1*
0.0
3.0
2.3
1.6
0.0
16.9*
22.3*
12.0
0.0
10.1
11.8
25.2*
0.0
1.7
1.9
0.5
0.0
10.1
20.8*
18.2*
0.0
13.5*
16.9*
18.5*
0.0
0.7
1.2
1.0
0.0
18.1*
0.0
13.8*
0.0
1.3
0.0
18.1*
0.0
11.0
0.0
1.6
0.0
23.1*
0.0
14.5*
0.0
1.6
29.1*
11.6
2.5
19.9*
15.0*
1.3
20.9*
17.2*
1.2
13.1
19.1*
0.7
14.2**
18.9*
0.8
31.3*
16.6*
1.9
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
28.4*
24.7*
1.2
25.6*
25.4*
1.0
30.0*
25.0*
1.2
46.8*
30.6*
1.5
35.9*
36.2*
1.0
37.9*
35.4*
1.1
67.7*
38.6*
1.8
50.5*
46.2*
1.1
43.7*
48.0*
0.9
114
-506.22
168
-819.31
na
na
147
-690.81
135
-639.30
na
na
133
-627.74
149
-1338.9
na
na
Note: * = significantly different from zero at 5% ** = significantly different from zero at 10%
154
Making choices: future dementia care
TABLE A–5: DIFFERENCES IN THE IMPACT OF DEMAND FROM CHANGING SERVICE LEVELS WITHIN THE RESIDENTIAL CARE EXPERIMENT
Distance from residential care
90 minutes
60 minutes
30 minutes
10 minutes
Private facilities
No private facilities (room, bathroom,
outdoor)
Limited private facilities (room only)
Some private facilities (room and
bathroom only)
All private facilities (room, bathroom, and
outdoor area)
Ability to accommodate cultural
background and recreational needs
Cannot be met
On special occasions only
On a group basis
On an individual basis
Skills of the staff in providing
dementia care
At a minimum standard required by law
Specialised in providing dementia care
AA
PP
Ratio
Current
Previous
Ratio
< 15hrs
≥ 15 hrs
Ratio
0.0
15.0**
20.3*
21.5*
0.0
16.3*
19.1*
30.2*
0.0
0.9
1.1
0.7
0.0
22.9*
21.7*
19.6*
0.0
6.8
15.6**
34.9*
0.0
3.3
1.4
0.6
0.0
8.7
19.6*
24.3*
0.0
15.3*
18.6*
25.4*
0.0
0.6
1.1
1.0
0.0
34.9*
0.0
8.3*
0.0
4.2
0.0
18.1*
0.0
23.2*
0.0
0.8
0.0
22.3*
0.0
20.1*
0.0
1.1
67.6*
38.5*
1.8
40.6*
66.8*
0.6
52.6*
51.1*
1.0
57.5*
51.1*
1.1
49.7*
59.2*
0.8
52.2*
53.0*
1.0
0.0
19.0*
24.0*
39.0*
0.0
8.6
15.4*
24.3*
0.0
2.2
1.6
1.6
0.0
8.9
9.8
23.8*
0.0
17.1**
30.2*
39.6*
0.0
0.5
0.3
0.6
0.0
15.1*
24.0*
27.4*
0.0
12.5*
17.9*
30.2*
0.0
1.2
1.3
0.9
0.0
59.1*
0.0
34.3*
0.0
1.7
0.0
43.6*
0.0
50.3*
0.0
0.9
0.0
39.3*
0.0
45.7*
0.0
0.9
Note: * = significantly different from zero at 5% ** = significantly different from zero at 10%
Continued next page
155
Making choices: future dementia care
TABLE A–6: DIFFERENCES IN THE IMPACT ON DEMAND FROM CHANGING SERVICE LEVELS WITHIN THE RESIDENTIAL CARE EXPERIMENT CONTINUED
Capacity to accommodate all stages of
dementia
Early and moderate stages of dementia
All stages of dementia. The resident will
not have to move locations as the
condition advances
Visiting hours
Restricted between 8am and 11am and
5pm and 8pm
Restricted to between 7am and 10pm
Fully flexible but family and friends
CANNOT stay overnight
Fully flexible, but family and friends CAN
stay overnight
Bond
$400,000
$300,000
$200,000
$100,000
No. of observations
Log likelihood (model)
AA
PP
Ratio
Current
Previous
Ratio
< 15hrs
≥ 15 hrs
Ratio
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
29.4*
18.9*
1.6
22.0*
25.1*
0.9
25.4*
23.3*
1.1
0.0
28.5*
0.0
9.3
0.0
3.1
0.0
23.3*
0.0
11.2
0.0
2.1
0.0
5.9
0.0
17.6*
0.0
0.3
14.2
4.9
2.9
14.4**
1.9
7.4
-1.9
8.9
-0.2
21.4*
8.3
2.6
14.8*
12.9
1.2
8.7
13.5*
0.6
0.0
13.1
27.2*
13.4**
0.0
5.2
14.5**
13.6**
0.0
2.5
1.9
1.0
0.0
7.8
22.8*
17.1*
0.0
9.3
16.3**
7.2
0.0
0.8
1.4
2.4
0.0
13.1**
24.9*
25.7*
0.0
8.3
19.9*
13.2*
0.0
1.6
1.2
1.9
148
-632.40
134
-637.18
na
na
160
-735.59
122
-536.57
na
na
135
-621.55
147
-1284.1
na
na
Note: * = significantly different from zero at 5% ** = significantly different from zero at 10%
156
Making choices: future dementia care
REFERENCES
Access Economics (2008) Testing the distribution of the first 33,000 ACFI appraisals, Report
for the Department of Health and Ageing, September, available at
http://health.gov.au/internet/main/publishing.nsf/Content/B2C4741F1912E497CA2574
C6001976FB/.
Access Economics (2006) Dementia in the Asia Pacific region: the epidemic is here, Report
for Asia Pacific members of Alzheimer’s Disease International, September.
Access Economics (2005a) Dementia estimates and projections: Australian states and
territories, Report for Alzheimer’s Australia, February.
Access Economics (2005b) The Economic Value of Informal Care, Report for Carers
Australia, October.
Access Economics (2004) Delaying the Onset of Alzheimer's Disease: Projections and
Issues, Report for Alzheimer’s Australia, Canberra, September.
Access Economics (2003) The dementia epidemic: economic impact and positive solutions
for Australia, Report for Alzheimer’s Australia, March.
ACIL Tasman (2003) Employment Frameworks in the Residential Aged Care Sector,
Prepared for the Department of Health and Ageing, 15 October.
ACIL Tasman (2003a) Efficient workforce structures in the Australian aged care sector, Final
report to the Department of Health and Ageing, November
Alzheimer Europe (2007) Who cares? The state of dementia care in Europe, available at
http://www.alzheimereurope.org/upload/SPTUNFUYGGOM/downloads/C9AE88C5E59C .pdf
Alzheimer’s Association (2002) Alzheimer’s Disease: The Costs to US Businesses in 2002,
available at http://www.alz.org/national/documents/report_alzcosttobusiness.pdf
Alzheimer’s Association (2007) Alzheimer’s disease Facts and Figures 2007, available at
http://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf
Alzheimer’s Australia (2007) Dementia, a major health problem for Indigenous people,
briefing prepared for Parliamentary friends of dementia, paper no. 12, August SCRGSP
2008 Report on Government services 2008, Productivity Commission, Melbourne.
-
(2007a) A guide to practice for managers in residential aged care facilities,
http://www.alzheimers.org.au/upload/QDC21.pdf, accessed 22 January 2009
-
(2007b) Practice in residential aged
care facilities for all
http://www.alzheimers.org.au/upload/QDC11.pdf, accessed 22 January 2009
-
(2007c) Exploring the Needs of Younger People with Dementia in Australia,
http://www.alzheimers.org.au/upload/YoungerOnset.pdf, accessed 28 March 2009.
staff,
157
Making choices: future dementia care
-
(2003) Quality dementia care. Position paper 2, Alzheimer’s Australia,
http://www.Alzheimer’s.org.au/upload/QualityDementiaCare.pdf,
accessed
22
January 2009
Alzheimer’s Society (2007) Dementia UK - The full report, available
http://www.Alzheimer’s.org.uk/ downloads/Dementia_UK_Full_Report.pdf
at
Anders W (2002) ‘Time spent on informal and formal care giving for persons with dementia in
Sweden’ Health Policy 61:255-268.
AON (2006) The Impact of Consumer-Directed Health Plans with Integrated Health
Improvement Services on Health Care Consumers, AON Consulting Inc.
Armstrong M (2000) ‘Factors affecting the decision to place a relative with dementia into
residential care’ Nursing Standard 14:33-37.
Australian Bureau of Statistics (2008) Labour Force, Australia, ABS Cat No 6202.0.
Australian Bureau of Statistics (2007) Voluntary work Australia, 2006, ABS Cat No 4441.0.
Australian Bureau of Statistics (2005a) Disability, Ageing and Carers 2003: Summary of
Findings, Australia, ABS Cat No 4430.0, Canberra.
Australian Bureau of Statistics (2005b) 2003 Disability, Ageing and Carers, Australia: Caring
in the Community, Cat No 4430.0.55.003, Canberra.
Australian Bureau of Statistics (2004) Australian Social Trends, Cat No 4102.0.
Australian Council of Trade Unions (2008) ACTU Submission to the Better Care for our
Carers Parliamentary Inquiry, Submission No. 725 to the House of Representatives
Standing Committee on Community Affairs, Housing and Youth, available at
http://www.aph.gov.au/house/committee/fchy/carers/subs/sub725.pdf
Australian Institute of Health and Welfare (2009) Health and community services labour
force. National health labour force series No 42, Cat No HWL 43, Canberra.
Australian Institute of Health and Welfare (2008) Nursing and midwifery labour force 2005
National health labour force series No 39, AIHW Cat No HWL 40, Canberra.
Australian Institute of Health and Welfare (2007a) Aged care packages in the community
2005–06: a statistical overview. Aged Care Statistics Series No 25, AIHW Cat No 55,
Canberra.
Australian Institute of Health and Welfare (2007b) Older Australia at a glance: 4th edition.
AIHW Cat No AGE 52, Canberra.
Australian Institute of Health and Welfare (2007c) Australia’s Welfare 2007, Cat No AUS 93,
Canberra.
Australian Institute of Health and Welfare (2007d) Welfare expenditure Australia 2005–06,
Health and welfare expenditure series No 31, AIHW Cat No HWE 38, Canberra.
Australian Institute of Health and Welfare (2007e) Residential Aged Care in Australia 2005–
2006: a statistical overview, Aged care statistics series 24, AIHW Cat No AGE 54,
Canberra.
158
Making choices: future dementia care
Australian Institute of Health and Welfare (2006) Dementia in Australia: National data
analysis and development, AIHW Cat No AGE 53, Canberra.
Australian Institute of Health and Welfare (2004). Residential aged care in Australia 2002–
03: a statistical overview, Aged Care Statistics Series No 18, AIHW Cat No AGE 38,
Canberra.
Australian Institute of Health and Welfare (2004a) Carers in Australia: assisting frail older
people and people with a disability, AIHW Cat No AGE 41, Canberra.
Australian Institute of Health and Welfare (2004b) Extended Aged Care at Home (EACH)
Census: A report on the results of the census conducted in May 2002, AIHW Cat No
AGE 33 (Aged Care Statistics Series No 15), Canberra.
Australian Institute of Health and Welfare (2003) Health and community services labour force
2001, AIHW Cat No HWL 27 and ABS Cat No 8936.0, National Health Labour Force
Series No 27, Canberra.
Australian Institute for Primary Care, Lincoln Gerontology Centre, Centre for Applied
Gerontology, Bundoora Extended Care Centre (2003) Review of the Cognitive
Dementia and Memory Service Clinics, A report prepared for the Department of Human
Services, Final Report, January.
Australian Treasury (2007) Budget 2007-08, Portfolio Budget papers, health and ageing.
Australian Treasury (2006) Budget 2006-08, Portfolio Budget papers, health and ageing.
Bentleys MRI Chartered Accountants and James Underwood and Associates (2005) National
Residential Aged Care Survey, 2004/05, Overview and Key Findings,
https://www.bentleys.com.au/bris_secure/files/200405NationalSurveySynopsisComplete.pdf
Bentleys MRI Chartered Accountants and James Underwood and Associates (2006) National
Residential
Aged
Care
Survey,
2005/06,
http://www.bentleysbenchmarking.com.au/agedcaresurvey/BentleysMRI_samplereport
_2006.pdf
Bosanquet N, Huttin C, Kurz A, Trabucchi M, Wenk Lang A, Johnson N (1997) ‘Alzheimer’s
disease: an international perspective on care delivery’ Health Policy Review 11.
Brodaty H, Draper B, Low L-F (2003) ‘Behavioural and psychological symptoms of dementia:
a seven-tiered model of service delivery’ MJA 178(5):231-234.
Brodaty H, Low L-F, Gomes L (2008) Australian Dementia Research: current status, future
directions? A report for Alzheimer’s Australia, Paper 16, June.
Broe A (2002) Population Ageing, Human Lifespan and Neurodegenerative disorders: a fifth
epidemiological transition, Swets and Zeitlinger Publishers, US, July 2002.
Burns A (2001) ‘Dementia’ Factsheet for Personal Social Services Research Unit, North
West Dementia Centre, University of Manchester, NHS Executive North West, UK.
Carers Australia (2005) Carer eligibility and needs assessment for the National Respite for
Carers Program, Comments by Carers Australia and the state/territory Carers
159
Making choices: future dementia care
Associations on the consultation paper ‘Carer eligibility and needs assessment for the
NRCP’.
http://www.carersvic.org.au/Assets/pdfs/PolicyDocs/ResponseEligibilityNeedsAssessm
entNRCP.pdf
Costello P (2007) Intergenerational Report 2007, Commonwealth of Australia, April.
Department of Health and Ageing (2007) Report on the operation of the Aged Care Act 1997,
1 July 2006 to 30 June 2007, DoHA.
Department of Health and Ageing (2006) Report on the Operation of the Aged Care Act
1997, 1 July 2005 to 30 June 2006, DoHA.
Doyle C, Ward S, Rees G (2005) EACH-Dementia development research project – review of
best practice in dementia care, Unpublished report to Department of Health and
Ageing.
Dura JR, Haywood-Niler E, Kiecolt-Glase JK (1990) ‘Spousal carers of persons with
Alzheimer’s and Parkinson’s disease dementia: a preliminary comparison’ The
Gerontologist 30:332-336.
Eager K, Owen A, Williams K, Westera A, Marosszeky N, England R, Morris D (2007)
Effective Caring: a synthesis of the International evidence on carer needs and
interventions, Centre for Health Service Development, University of Wollongong,
available
at
http://www.health.gov.au/internet/main/publishing.nsf/Content/ageingpublicat-effective-caring-v1.htm
Edwards B, Higgins DJ, Gray M, Zmijewski N, Kingston M (2008) The nature and impact of
caring for family members with a disability in Australia, Australian Institute of Family
Studies
Research
Report
No
16,
available
at
http://www.aifs.gov.au/institute/pubs/resreport16/report16pdf/rr16.pdf
Epp T (2003) Person centred dementia care: a vision to be refined, Canadian Alzheimer’s
Disease Review, April.
Farrow M (2008) Dementia risk reduction: what do Australians know? Alzheimer’s Australia,
Canberra.
Forbes D (2002) ‘Does training family care givers of individuals with dementia to view their
role in a more clinical manner reduce adverse events associated with care giving?’
Evid. Based Nurs. 5;21- doi:10.1136/ebn.5.1.21
Foreman P, Gardner I (2005) Evaluation of Education and Training of Staff in Dementia Care
and Management in Acute Settings, Lincoln Centre for Ageing and Community Care
Research Latrobe University, for the Aged Care Branch, Department of Human
Services, April.
Gormley N (2000) ‘Editorial - The role of dementia training programmes in reducing caregiver burden’ Psychiatric Bulletin 24:41-42.
Grafström M, Fratiglioni L, Sandman P-O, Winblad B (1992) ‘Health and social
consequences for relatives of demented and non-demented elderly. A populationbased study’ Journal of Clinical Epidemiology 45:861-870.
160
Making choices: future dementia care
Haley W (1997) ‘The family care giver’s role in Alzheimer’s disease’ Neurology 48:S25-S29.
Hall RE, Jones CI (2005) The Value of Life and the Rise in Health Spending, October,
available at http://www.frbsf.org/economics/conferences/0511/3_ValueOfLife.pdf
Harvey RJ, Skelton-Robinson M, Rossor MN (2003) ‘The prevalence and causes of
dementia in people under the age of 65 years’ Journal of Neurology Neurosurgery and
Psychiatry, 74(9):1206–9.
Hensher DA, Rose JM (2005) ‘Respondent behaviour in discrete choice modelling with a
focus on the valuation of travel time savings’, Journal of Transportation and Statistics,
8(2):17-30.
Hensher DA, Shore DN, Train K (2005) ‘Households’ willingness to pay for water service
attributes’, Environmental & Resource Economics, 32: 509-531.
Hepburn KW, Tornatore J, Center B, et al (2001) ‘Dementia family carer training: affecting
beliefs about caregiving and carer outcomes.’ J Am Geriatr Soc 49:450–7.
Hogan W (2004) Review of Pricing Arrangements in Residential Aged Care, Final Report,
available at http://www.health.gov.au/internet/ministers/publishing.nsf/Content/healthmediarel-yr2004-jb-bis033.htm?OpenDocument&yr=2004&mth=3.
Hole AR (2007) ‘A comparison of approaches to estimating confidence intervals for
willingness to pay measures’ Health Economics, 16: 827-840.
Hooker K, Bowman S, Coehlo DP, Lim SR, Kaye J, Guariglia R, Li F (2002) ‘Behavioural
Change in Persons with Dementia: Relationships with Mental and Physical Health of
Carers’ The Journals of Gerontology 57:453-460.
Howe A (2006) Cultural diversity, ageing and HACC: trends in Victoria in the next 15 years
A project commissioned by Aged Care Branch Department of Human Services,
Victoria.
Howe A (2003) Is Consumer-Directed care: A Direction for Australia? Paper commissioned
by Alzheimer’s Australia.
Jenkins A, Rowland F, Angus P, Hales C (2003) The future supply of informal care, 2003 to
2013: alternative scenarios. AIHW Cat No AGE 32. Canberra: AIHW.
Krinsky I, Robb AL (1990) ‘On approximating the statistical properties of elasticities: A
correction’, Review of Economics and Statistics, 72:199-209.
Krinsky I, Robb AL (1986) ‘On approximating the statistical properties of elasticities’, Review
of Economics and Statistics, 68:715-719.
Kyriazopoulos H (2007) Dementia Has No Barriers, power point slides presented to Cultural
Diversity in Ageing 2007 National Conference, sponsored by the Centre for Cultural
Diversity and Ageing.
LAMA Consortium (La Trobe University - Australian Institute for Primary Care, Applied Aged
Care Solutions, University of Melbourne and Access Economics) (2007) Helping
Australians with Dementia, and their Carers Dementia National Health Priority Initiative
161
Making choices: future dementia care
National Evaluation Framework, October, last accessed
http://www.latrobe.edu.au/aipc/projects/DHPI/PDF/framework.pdf.
28 March
2009
Lee H, Cameron M (2004) ‘Respite care for people with dementia and their carers’.
Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD004396. DOI:
10.1002/14651858.CD004396.pub2.
Leong J, Madjar I, Fiveash B (2003) ‘Needs of family carers of elderly people with dementia
living in the community’ Australasian Journal on Ageing 20:133-138.
LoGiudice D, Waltrowicz W, McKenzie S, Ames D, Flicker L (1995) ‘Prevalence of dementia
among patients referred to an aged care assessment team and associated stress in
their carers.’ Australian Journal of Public Health, 19:275-79.
Light E, Lebowitz BD eds. (1994) Stress effects on family carers of Alzheimer’s patients:
Research and Interventions, Springer, New York.
Lincoln Centre for Ageing and Community Care Research (2006) Aged Care Assessment
Program Minimum Data Set Annual Report: Victoria July 2004–June 2005, Report for
the Victorian Department of Human Services.
Lobo A, Launer L, Fratiglioni L, Andersen K, Di Carlo A, Breteler M, et al (2000) ‘Prevalence
of dementia and major subtypes in Europe: A collaborative study of population-based
cohorts’ Neurology 54(Suppl 5):S4-9.
Matsumoto N, Ikedaa M, Fukuhara R, Shinagawaa S, Ishikawa T, Mori T, Toyota Y,
Matsumoto T, Adachi H, Hirono N, Tanabe H (2007) ‘Carer Burden Associated with
Behavioural and Psychological Symptoms of Dementia in Elderly People in the Local
Community’ Dementia and Geriatric Cognitive Disorders 23:219-224.
McFadden D (1974) Conditional logit analysis of qualitative choice behaviour, Frontiers in
Econometrics, edited by P. Zarembka, Elsevier, New York, Chapter 4, pp. 105-142.
Metlife Mature Market Institute (2006) The MetLife Study of Alzheimer’s Disease: The
Caregiving Experience.
Misplon S et al (2004) ‘Care time and costs of care for elderly persons with dementia’ Arch
Public Health 62:143-156.
Moise P, Schwarzinger M, Um, M-Y and the Dementia Experts’ Group (2004) Dementia Care
in 9 OECD Countries: A Comparative Analysis, OECD Health Working Papers No 13,
Organisation
for
Economic
Cooperation
and
Development,
Paris.
http://www.oecd.org/dataoecd/10/52/33661491.pdf
Moonee Valley Melbourne Primary Care Partnership and Alzheimer’s Australia (2007)
Interagency Dementia Care Planning Protocol to assist transitions in care for people
with dementia and their carers’ at home.
Moore MJ, Zhu CW, Clipp EC (2001) ‘Informal Costs of Dementia Care – Estimates from the
National Longitudinal Carer Study’ The Journals of Gerontology Series B:
Psychological Sciences and Social Sciences 56:S219-S228.
Morris RG, Morris LW, Britton PG (1988) ‘Factors affecting the emotional wellbeing of the
carers of dementia sufferers’ British Journal of Psychiatry 153:147-156.
162
Making choices: future dementia care
National Alliance for Caregiving and AARP (2004) Caregiving in the US, April, available at
http://www.caregiving.org/data/04finalreport.pdf
National Centre for Social and Economic Modelling (2004) Who’s going to care? Informal
care and an ageing population NATSEM, University of Canberra.
National Institute of Labour Studies (2003) Who cares for the elders? What we can and can’t
know from existing data, Josh Healy and Sue Richardson, August
National Institute of Labour Studies (2004) The care of older Australians, a picture of the
residential aged care workforce, Professor Sue Richardson and Associate Professor
Bill Martin, February.
Office for the Ageing, Department of Families and Communities, Government of South
Australia (2006) Home and Community Care South Australia, 2006 Workforce Planning
Project, OFTA SA, June
Ory MG, Hoffman RR 3rd, Yee JL, Tennstedt S, Schulz R (1999) ‘Prevalence and impact of
caregiving: a detailed comparison between dementia and nondementia carers’
Gerontologist 39:177-185.
Ory MG, Yee JL, Tennstedt SL, Schulz R (2000) ‘The Extent and Impact of Dementia Care:
Unique Challenges Experienced by Family Carers’ in Schulz R, Handbook on
Dementia Caregiving: Evidence-based Interventions for Family Carers, New York.
O’Shea E (2000) The costs of caring for people with dementia and related cognitive
impairments, National Council on Ageing and Older People, Centre for Ageing Studies,
University of Ireland, Galway.
Ostbye T, Crosse E (1994) ‘Net economic costs of dementia in Canada’ Canadian Medical
Association Journal 151:1457-1464.
Pot A, Zarit S, Twisk J, Townsend A (2006) ‘Transitions in Carers’ use of paid home help:
Associations with stress appraisals and well-being’ Psychology and Aging 20:211-219.
Proctor R, Martin C, Hewison J (2002) ‘When a little knowledge is a dangerous thing…: a
study of carers’ knowledge about dementia, preferred coping style and psychological
distress’ International Journal of Geriatric Psychiatry 17:1133-1139.
Productivity Commission (2008) Implications and policy challenges of ageing for Australia,
2020 Summit Round table presentation by Ralph Lattimore, 18 April.
Productivity Commission (1999) Nursing Home Subsidies, Inquiry Report, AusInfo, Canberra.
Raivio M, Eloniemi-Sulkava U, Laakkonen M-L, Saarenheimo M, Pietilä M, Tilvis R, Pitkälä K
(2007) ‘How do officially organized services meet the needs of elderly carers and their
spouses with Alzheimer’s Disease?’ American Journal of Alzheimer’s Disease and
Other Dementias 22:360.
Ritchie K, Kildea D, Robine JM (1992) ‘The relationship between age and prevalence of
senile dementia: a meta-analysis of recent data’ International Journal of Epidemiology,
21(4):763–9.
163
Making choices: future dementia care
Ritchie K, Kildea D (1995) ‘Is senile dementia ‘age-related’ or ‘ageing-related’? Evidence
from meta-analysis of dementia prevalence in the oldest old’ Lancet 346:931-4.
Rosewarne R, Opie J, Ward S (2000) ‘Dementia specific care in Australia: an overview and
future directions’ RPAD Vol 4: Special Care Units.
Rosewarne R, Opie J, Bruce A, Ward S, Doyle C, Sach J (1997) ‘Care Needs of People with
Dementia and Challenging Behaviour Living in Residential Facilities’ Aged and
Community Care Service Development and Evaluation Reports Nos 24, 26-31,
Commonwealth Department of Health and Family Services, Australian Government
Publishing Service, Canberra.
Schofield H (1998) Family carers: Disability, illness and ageing, St Leonards, Australia.
Shanley C (2001) Promoting flexible respite for people living with dementia: An information
and resource package Department of Ageing, Disability and Home Care Funded as
part of the NSW Action Plan on Dementia 1996-2001.
Sloan J, Barnett K (2006) Home and Community Sought Australia 2006 Workforce Planning
Project, Report for the Office for the Ageing, Department for Families and
Communities, Government of South Australia.
Steering Committee for the Review of Government Service Provision (2008) Report on
Government Services 2008, SCRGSP, Productivity Commission, Canberra.
StollzNow Research Pty Ltd (2007) Australians’ Understanding of Alzheimer’s and Dementia,
Market research report prepared for Pfizer Australia and Alzheimer’s Australia.
Suh G-H, Knapp M, Kang C-J (2002) ‘The economic costs of dementia in Korea’
International Journal of Geriatric Psychiatry 21:722-728.
Taskforce on Care Costs (2006) Where to now? 2006 TOCC Final
http://www.tocc.org.au/media/TOCC_2006_Final_Report_16_Oct_2006.pdf
Report.
Taskforce on Care Costs (2007) 2007 TOCC Report: The hidden face of care: Combining
work and caring responsibilities for the aged and people with disability.
http://www.tocc.org.au/
media/Final_TOCC_2007_Report_The_Hidden_Face_of_Care_15_Nov_2007.pdf
Teri L (1994) ‘Behavioural treatment of depression in patients with dementia’ Alzheimer
Disease and Associated Disorders 8:S66-S74.
Tilly J, Rees G (2007) Consumer-directed care: A way to empower consumers? Alzheimer’s
Australia Paper 11, May.
United States Department of the Treasury (2006) Fact sheet: Dramatic growth of Health
Savings Accounts (HSAs), United States Department of the Treasury,
http://www.ustreas.gov/offices/public-affairs/hsa/pdf/fact-sheet-dramatic-growth.pdf,
accessed 3 April 2008.
Victorian Government Department of Human Services (2006) Pathways to the Future, 2006
and Beyond Dementia, Framework for Victoria, April, Melbourne.
164
Making choices: future dementia care
Volicer L (2007) ‘Carer burden in dementia care: Prevalence and health effects’ Current
Psychosis and Therapeutics Reports 3:20-25.
Vos T, Barker B, Stanley L, Lopez AD (2007) The burden of disease and injury in Aboriginal
and Torres Strait Islander peoples 2003. Brisbane: School of Population Health, The
University of Queensland.
Warner J, Butler R (2000) ‘Alzheimer’s Disease’ Clinical Evidence 3:419-425.
Wilson MR, Houtven CH, Stearns SC, Clipp EC (2007) ‘Depression and Missed Work among
Informal Carers of Older Individuals with Dementia’ Journal of Family and Economic
Issues 28:684-698.
Wimo A, Nordberg G, Jönsson L (2007) ‘An estimate of the total worldwide societal costs of
dementia in 2005’ Alzheimer’s & Dementia 3.
Woodward M (in association with Pofessor Henry Brodaty, Associate Professor Marc Budge,
Associate Professor Gerard Byrne, Dr Maree Farrow, Professor Leon Flicker, Dr Jane
Hecker, Dr Srikanth Velandai) (2007) Dementia risk reduction: the evidence.
Alzheimer’s
Australia,
Canberra,
last
accessed
28 March
2009
http://www.alzheimers.org.au/upload/RiskReductionSept07.pdf.
165