Carers Queensland Inc. submission to the
Brisbane North Primary Health Network
Mental health and suicide prevention needs assessment
June 2016
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Submission
Title:
Date:
Author:
Approved by:
Submission to the Brisbane North Primary Health Network
Mental health and suicide prevent needs assessment
June 2016
Sarah Walbank, Policy and Research Officer
[email protected]
Debra Cottrell, Chief Executive Officer
Carers Queensland Inc.
[email protected]
15 Abbott Street
Camp Hill
Queensland 4152
Phone: (07) 3900 8100
Website: www.carersqld.asn.au
ABN: 20 061 257 725
© Carers Queensland Inc. 2016
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CARERS QUEENSLAND INC.
Family and friend carers provide unpaid care and support to family members and
friends who have a disability, mental illness, chronic medical condition, terminal illness
or are frail aged.
The activity and impact of providing care is best understood in terms of its context; as
a relationship between two or more individuals, rooted in family, friendship or
community. Caring is a role rarely chosen by most, nor does it discriminate. Children
and young people, people of working age and older people, people with disability,
people who identify as culturally and linguistically diverse, indigenous Australians,
people with diverse bodies, genders, relationships and sexualities and those living in
rural and remote Queensland provide care to a family member or friends on a daily
basis. For some caring is a short term commitment whilst for others, it is a role that
literally lasts a lifetime.
Carers Queensland Inc. is the peak body representing the diverse concerns, needs and
interests of carers in Queensland. Carers Queensland believes that all carers
regardless of their age, disability, gender identification, sexual orientation, religion,
socioeconomic status, geographical location or their cultural and linguistic differences
should have the same rights, choices and opportunities and be able to enjoy optimum
health, social and economic wellbeing and participate in family and community life,
employment and education like other citizens of the State. Carers Queensland’s
mission is to improve the quality of life of all carers throughout Queensland.
We believe we are in a unique position to advocate on behalf of the 484,400 carers
living in Queensland. We aspire to provide an independent platform from which to
advance the issues and concerns of carers and believe our knowledge and expertise in
carer issues means that we are able to provide the Government and industry with
relevant and trusted information that will ensure that the needs of carers will be
recognised, respected and acted upon. Our ambition is to ensure that carers are
recognised and included as active partners in the development of government health
and social policy, legislation and service delivery practices.
This submission reflects the concerns of Queensland’s carers, those citizens who
provide unpaid care and support to vulnerable family members and friends. This
submission has been informed by consultation with Queensland’s carers and
Australian and international research.
Carers Queensland Submission – BN PHN Mental health and suicide prevention needs assessment
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CARER DEMOGRAPHICS
In 2012, 2.7 million1 people, including an estimated 78,000 young carers under 15
years of age2, provide informal care and support to family and friends who have a
disability, mental illness, chronic medical condition, terminal illness or are frail aged.
Nationally carers provide more than 1.9 billion hours of care and support per year
(equivalent to each carer providing 673 hours per year or 13 hours per week).
Carers are the ‘invisible and unpaid workforce’ providing more than 74%3 of the
assistance required by the people they care for and support, complementing the
formal disability, mental health and aged care sectors. Conservative national
estimates suggest the replacement value of family provided care is $60.3 billion dollars
per annum (equivalent to 3.8% of GDP and 60% of the health and social work
industry).4 The contribution of the 484,400 carers in Queensland is estimated to be
between $10.2 and $10.5 billion per annum.
AIHW data indicates that 97.5% of people with severe and profound limitations of
working age live in the community and 84% co-reside with the carer5 and that 92% of
Australians with a severe or profound limitation received informal care and support of
which 38% received care and support from informal carers only.6
Research from the Australian Centre on Quality of Life7 clearly articulates the
relationship between caring responsibilities and diminished health and wellbeing:
•
Carers have the lowest collective wellbeing of any group yet researched
•
Carers have an average rating on the depression scale that is classified as
moderate depression
•
Female carers have a lower wellbeing than male carers
•
Sole parent carers have the lowest wellbeing of all carers
•
More than one-fifth of carers are unemployed
•
Having a significant medical or psychological condition is associated with
lower wellbeing
•
Not receiving treatment is extremely damaging to wellbeing
•
The wellbeing of carers is less than that of the general population even when
the level of carer support is rated 10/10
•
The wellbeing of carers decreases linearly as the number of hours spent
caring increases
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Failure to recognise, acknowledge and support carers, in both their capacity as a carer
and as a citizen, heightens their risk of becoming collateral casualties, further
compromising their health and wellbeing, reducing the efficacy of the care and
support they provide and increasing the cost burden to the health and social service
systems. Well supported and respected carers are more likely to provide better care
for the individual and improve recovery outcomes.
RECOMMENDATION
Carers Queensland is grateful for the opportunity to review the draft mental health
and suicide prevention needs assessment.
Having reviewed the draft document we are disappointed that family and friend carers
have not been recognised as a population cohort in their own right. Australian and
international data clearly shows the relationship between diminished physical and
psychological health and wellbeing and social and financial inclusion and the caring
role.
The Carer Recognition Act 2010 (Cth) and the Carers (Recognition) Act 2008 (Qld)
stipulates that carers should be recognised and respected as partners with other care
providers in the provision of care, recognised as individuals with their own needs and
supported to achieve greater economic and social wellbeing.
Having regard for the enormous contribution of carers to both the individual care
recipient and the health and social service systems, the poorer health and wellbeing
of carers and State and Commonwealth carer recognition legislation, Carers
Queensland believes the business and moral imperative to include carers as a
separate population cohort cannot be overlooked.
As such Carers Queensland respectfully requests that carers are included as a
population group in their own right in the needs assessment profiles. We provide the
following peer reviewed data and reputable grey literature for inclusion into the final
needs analysis.
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4.0 Brisbane North PHN profile
4.3 Carer Demographics
Carer
Brisbane North
Qld
Estimates (‘000)
Age
Less than 65 years
65 years of more
Gender
Males
Females
Equivalised gross Lowest and 2nd quintiles
household
3rd,4th & 5th quintiles
income quintiles Income unknown
Relationship
Spouse/partner
Parent
Other
114.1
42.3
73.0
84.1
42.4
54.0
60.3
53.1
26.4
38.0
381.20
104.8
209.4
275.0
187.9
151.6
146.8
159.3
92.0
119.6
Source: Survey of Disability, Ageing and Carers, 2012 data at SA4 level
5.0 MENTAL HEALTH AND SUICIDE PREVENTION HEALTH NEEDS
5.1 Children and young adult carers
Young carers (10 -18 years of age) and young adult carers (18 to 25 years of age) can
be either primary or secondary carers, providing care and support to (one or more) sibling, parent, grandparent, other family or friend.
Research indicates that:
•
•
•
•
•
•
•
Between 4% and 10% of children and young adults will regularly provide care
and support during their formative years8
There are higher rates of young carers in culturally and linguistically diverse
families
56% of young carers and 53% of young adult carers live in a household in the
lowest two-fifths of income9
There are higher rates of young carers in local government areas with relatively
high rates of lone parent households
Young adult carers encounter greater disadvantage than young carers with
respect to non-participation in education and employment10
Young carers in receipt of income support are nine times more likely to live in
areas of high socio-economic disadvantage11
Sibling carers have a significantly increased risk of depression12
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5.2 Adult carers
Adults of working age can be either primary or secondary carers to one or more
members of the extended family – children, spouse, parents and parent-in-law,
grandparents, grandchildren, other family and friends.
Research from the Australian Institute of Family Studies13 indicates that:
•
•
•
•
•
•
•
Adult carers have significantly worse mental health and vitality and higher
rates of depression than the general population.
51% of female and 30.7% of male carers reported being depressed for six
months or more since commencement of their caring role.
The risk of a depressive episode of 6 months or more is greatest in the first
year of caring (13%) but over the next 20 years is stable (3%).
20.8% of carers of a person with a cancer diagnosis experience clinical
depression within three months of the diagnosis; 18.6% six weeks later,
dropping to 10% at six months post diagnosis.
Primary carers have higher levels of clinical depression (37.7%) and anxiety
(44.1%) than secondary carers (18.6% and 15% respectively).
Carers who care for a person with high care needs have lower energy levels
and poorer mental health.
Carers who care for two or more people have significantly poorer mental
health than carers of one person.
Research from the Australian Unity Wellbeing Index14 indicates that:
•
•
•
•
19% of carers exhibit severe levels of depression
Male carers have a higher level of personal wellbeing than female carers but
both experience lower levels of wellbeing than their non-caring counterparts
Females have significantly higher levels of depression and stress than male
carers.
Sole parents have the highest levels of depression and partnered parents with
a child the highest level of stress.
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The impact on a carer’s physical and emotional wellbeing is very much related to the
duration and intensity of their caring responsibilities. The greater number of hours
committed to the caring role often results in greater physical and emotional wellbeing
costs, particularly for the primary carer who carries the greater burden.
Adverse physical and emotional impact on the
primary carer
overall physical health and emotional wellbeing changes
felt weary and lacking energy
felt worried or depressed
diagnosed with a stress related disorder
suffer sleep interruption
20 or
less
hours
22%
24%
24%
8%
28%
40
plus
hours
43%
39%
36%
14%
63%
Source: Australia’s Welfare 2013.
5.2.2 Mental health carers
Unfortunately our own experience as a service provider highlights that carers in
Queensland are not consistently recognised as partners in the treatment planning or
recovery journey or as individuals deserving recognition and support in their own right
despite carrying a care burden comparable to prolonged and challenging
responsibilities of dementia carers.15
Beyondblue16 research suggests that more than half of carers experience moderate
levels of depression and a further fifth experience severe depression.
Wesley Mission17 research indicates that carers:
•
•
•
•
Feel downhearted and blue
Feel agitated and find it difficult to relax
Carers of a spouse or partner with mental health problems are more likely to
experience agitation and have difficulty with relaxing
Drink more alcohol to cope (25% male and 23% female )
5.2.3 Dementia carers
The majority of people with dementia living in the community are cared for and
supported by a family carers and 25% of those carers provide 40 hours or more of care
per week. More than two-thirds of carers maintain that level of care for more than a
year, with one-third caring at that level for five years or more.18
Caring for a person with dementia, managing the increasing cognitive impairment and
behavioural problems, is acknowledged to be more burdensome than caring for a
person with a physical disability.19 As a consequence carers of people with dementia,
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particularly those who provide intense support and/or care over a prolonged period,
experience higher than normal rates of depression, anxiety and hopelessness20 with
estimates of depression ranging from 25% to 70%.21
5.2.4 Lesbian, Gay, Bisexual, Transgender or Intersex carers
Prevalence:
9% of adult men and 15% of adult women report same sex attraction or have had
sexual contact with someone of the same sex although only approximately 2% identify
as lesbian, gay or bisexual.
International evidence suggest the prevalence of transgender people as being 1:500
and 1:11,50022 and intersex people from 1:200 to 1:2000 depending on the conditions
included.23
Queensland Association for Healthy Communities (QAHC) suggest that there are
between 72,000 and 370,000 lesbian, gay, bisexual or transgender people living in
Queensland or between 2.5% to 15% of the population.24
Disability:
Private Lives 225 data suggest that nearly one-quarter of the LGBTI population have a
long term health condition or disability:
• 40.8% reported a physical or diverse disability
• 31.1% reported a psychiatric disability
• 22.1% reported “other”
Mental health:26
•
•
•
•
•
36.2% of trans people and 24.4% of gay, lesbian and bisexual people currently
meet the criteria for experiencing major depressive episodes
Lesbian, gay and bisexual people a twice as likely to have high/very high level
of psychological distress as their heterosexual peers
31%of homosexual/bisexual people experience anxiety disorders
18.2% experience affective disorders
Intersex adults show psychological distress at levels comparable with
traumatized non-intersex women (e.g. those with a history of severe physical
or sexual abuse)
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LGBTI carers:
Little is known about LGBTI carers in Australia. However, we do know that older LGBTI
people are more likely to be carers and rely on intimate partners and friend carers.
This is attributed to the facts that older LGBTI people have limited contact with
biological family and they are less likely to have children. It has also been attributed
to their historical experiences of discrimination – which for many has contributed to
delays accessing formal services due to fear of discrimination.27
5.6 SUICIDE AND SELF-HARM
5.6.1 Dementia carers:
•
•
•
Australian research indicates that 26% of carers of a person with dementia
think about suicide; of which approximately 33% were considered likely to
attempt suicide in the future. 28
Homicidal ideation is a real and significant phenomenon among family carers
of people with dementia.29
Of the homicides-suicides committed by older and elderly adults research
indicates that 50% of homicides-suicides were committed by spousal carers,
with 20% of those caring for a spouse with dementia. 30
5.6.2 LGBTI carers:
•
•
•
•
•
•
•
Suicidal ideation was reported by more than 50% of the primary caregivers of
gay and bisexual men with AIDS.31
LGBTI people have the highest rates of suicidality of any population in
Australia
20% of trans people and 15.7% of lesbian, gay and bisexual people report
current suicidal ideation
Up to 50% of trans people have attempted suicide at least once
Same sex attracted people have up to 14 times higher rates of suicide
attempts than their heterosexual peers; rates are 6 times higher for same sex
attracted young people
The average age of first suicide attempt is 16 years, often before coming out
Many LGBTI people who attempt suicide have not disclosed their sexual
orientation, gender identity or intersex status to other or only very few
people.32
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REFERENCES
1
Australian Bureau of Statistics. (2013). Survey of Disability, Ageing and Carers. 44300Do003_2012
Deloitte Access Economics. (2010). The Economic Value of Informal Care in 2015. Report for Carers
Australia, October. Canberra: Carers Australia
3
The Allen Consulting Group. (2007). The Future of Community Care. Report to the Community Care
Coalition. http://www.agedcare.org.au/what-we-do/community-care/Allen-consulting-future-ofcommunity-care-report.pdf
4
Deloitte Access Economics. (2010). The Economic Value of Informal Care in 2015. Report for Carers
Australia, October. Canberra: Carers Australia
5
Australian Institute of Health and Welfare. (2008). Trends in prevalence, education employment and
community living. Bulletin 61. Canberra: Author
6
Australian Institute of Health and Welfare. (2011). Australia’s welfare 2011. Australia’s welfare series
no. 10 Cat. No. AUS 142. Canberra: Author. http://www.aihw.gov.au/publication-detail
7
Cummins, R., Hughes, J., Tomyn, A., Gibson, A., Woerner, J. & Lai, L. (2007). The Wellbeing of
Australians – Carer Health and Wellbeing. Australian Unity Wellbeing Index Survey 17.1. Canberra:
Carers Australia. http://www.deakin.edu.au/reserach/acqol/index.htm
8
Moore, T. & McArthur, M. (2007). We’re all in it together: supporting young carers and their families
in Australia. Health and Social Care in the Community 15(6), 561-568
9
Australian Bureau of Statistics. (2012). Caring in the community. Australia: summary of findings,
2012. ABS cat. No. 4436.0.
10
Cass, B., Brennan, D., Thomson, C., Hill, T. Purcal, C., Hamilton, M. & Adamson, E. (2011). Young
carers: Social policy impacts of the caring responsibilities of children and young adults. Report
prepared for the ARC Linkage Partners. Sydney: University of New South Wales Social Policy Research
Centre.
11
Moore, T. & McArthur, M. (2007). We’re all in it together: supporting young carers and their
families in Australia. Health and Social Care in the Community 15(6), 561-568
12
Edwards, B., Higgins, D. J., Gray, M., Zmijewski, N. & Kingston, M. (2008). The nature and impact of
caring for family members with a disability in Australia. Research Report No. 16. Canberra: Australian
Institute of Family Studies
13
Edwards, B., Higgins, D. J., Gray, M., Zmijewski, N. & Kingston, M. (2008). The nature and impact of
caring for family members with a disability in Australia. Research Report No. 16. Canberra: Australian
Institute of Family Studies
14
Cummins, R., Hughes, J., Tomyn, A., Gibson, A., Woerner, J. &Lai, L. (2007). The Wellbeing of
Australians – Carer Health and Wellbeing. Australian Unity Wellbeing Index Survey 17.1. Canberra:
Carers Australia. http://www.deakin.edu.au/reserach/acqol/index.htm
15
Wrosch, C., Amir, E. & Miller, G. E. (2011). Goal Adjustment Capacities, Coping, and Subjective WellBeing: The Sample Case of Caregiving for a Family Member with Mental Illness. Journal of Personality
and Social Psychology, 100(5), 934-946. Doi:10.1037/a0022873
16
Beyondblue. (2012). beyond blue Guide for carers. http://www.beyondblue.org.au
17
Wesley Mission. (2012). The Wesley Report. Keeping minds well: caring till it hurts. Sydney: Author
18
Access Economics. (2010). Caring Places: Planning for aged care and dementia 2010-2050.
Canberra: Author
19
Access Economics. (2009). Making choices: Future dementia care – project, problems and
preferences. Canberra: Author. http://www.fightdementia.org.au/research-publications/accesseconomics-report.aspx
20
Pinquart, M., & Sorenson, S. (2003). Differences between caregivers and non-caregivers in
psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250-267.
21
Access Economics. (2009). Making choices: Future dementia care – project, problems and
preferences. Canberra: Alzheimer’s Australia. http://www.fightdementia.org.au/researchpublications/access-economics-report.aspx
22
Davies, S. (2015). Good Practice Guide. Many shades of blue: enhancing service delivery to address
the mental health needs of the LGBTI populations. Brisbane: Queensland AIDS Council
23
Rosenstreich, G. (2013). LGBTI people: mental health and suicide (Revised 2nd edition). Sydney:
National LGBTI Health Alliance.
2
Carers Queensland Submission – BN PHN Mental health and suicide prevention needs assessment
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24
Queensland Association for Health Communities. (2010). Improving the lives of LGBT
Queenslanders: a call to action. Brisbane: Author.
http://www.qahc.org.au/search/node/improving+the+lives+of+LGBT+Queenslanders%3A+a+call+to+
action
25
Leonard, W., Pitts, M., Mitchell, A., Lyons, A., Smith, A., Patel, S., Couch, M. and Barratt, A. (2012).
Private Lives 2: The second national survey of the health and wellbeing of gay, lesbian, bisexual and
transgender (GLBT) Australians. Monograph Series Number 86. Melbourne: The Australian Research
Centre in Sex, Health and Society, La Trobe University.
http://www.latrobe.edu.au/news/articles/2012/article/private-lives-2
26
Rosenstreich, G. (2011). LGBTI people: mental health and suicide. Briefing Paper, 2011. Sydney:
National LGBTI Health Alliance.
27
Barrett, C; Crameri, P. (2015). An extra degree of difficulty: An evidence based resource exploring
the experiences and needs of older LGBTI carers and the carers of older LGBTI people. Melbourne:
Australian Research Centre in Sex, Health and Society, La Trobe University.
28
O’Dwyer, S., Moyle, W., Zimmer-Gembeck, M., De Leo, D. (2013). Suicidal ideation in family carers
of people with dementia: a pilot study. International Journal of Geriatric Psychiatry
29
O’Dwyer, S., Moyle, W., Taylor, T., Creese, J. & Zimmer-Gembeck, M., (2015). Homicidal ideation in
family carers of people with dementia. International Journal of Geriatric Psychiatry
30
Bourget, D., Gagne, P., & Whitehurst, L. (2010). Domestic homicide and homicide-suicide: The older
offender. Journal of the American Academy of Psychiatry and the Law, 38, 305-311.
31
Snmrosengard, C. & Folkman, S. (1997). Suicidal ideation, bereavement, HIV serostatus and
psychosocial variables in partners of men with AIDS. AIDS Care: Psychological and Socio-medical
Aspects of AIDS/HIV, 9(4), 373-384. Doi: dx.doi.org/10.1080/713613168
32
Rosenstreich, G. (2011). LGBTI people: mental health and suicide. Briefing Paper, 2011. Sydney:
National LGBTI Health Alliance.
Carers Queensland Submission – BN PHN Mental health and suicide prevention needs assessment