International Psychogeriatrics: page 1 of 11 © International Psychogeriatric Association 2016
doi:10.1017/S1041610216002003
The newly revised interview for deteriorations in daily living
activities in dementia (R-IDDD2): distinguishing initiative from
performance at assessment
...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Clarissa M. Giebel,1,2 David Challis3 and Daniela Montaldi2
1
School of Health Sciences, University of East Anglia, Norwich, UK
Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
3
Personal Social Services Research Unit, The University of Manchester, Manchester, UK
2
ABSTRACT
Background: Minimal evidence exists on the detailed deficits in complex instrumental activities of daily living
(IADLs) in mild dementia. The aim of this study was twofold, to validate a revised questionnaire focusing
measuring the initiative and performance of IADLs in mild dementia and to explore the relationship between
individual IADLs and patient and carer well-being.
Methods: A total of 183 carers of people with mild dementia completed a further modified Revised Interview
for Deterioration in Daily Living Activities 2 (R-IDDD2), which comprised new activities such as computer use,
as well as sub-activities on the performance scale. Carers also completed questionnaires assessing patient
quality of life (QoL-AD), carer quality of life (AC-QoL), and burden (GHQ-12).
Results: Persons with dementia were significantly poorer initiating than performing cleaning, doing repair work,
and preparing a hot or cold meal, whereas being poorer at performing dressing and following current affairs. Using
the computer, preparing a hot meal, finance, and medication management were most impaired, whereas more
basic activities of dressing, washing oneself, brushing hair or teeth, and preparing a hot drink were most preserved.
Poor initiative and performance on nearly all activities were significantly related to reduced carer and patient
well-being.
Conclusions: The R-IDDD2 offers a platform to comprehensively assess everyday functioning. Deteriorations
in initiative and performance need to be targeted separately in interventions, as the former requires effective
triggering and the latter structured training and support. Most activities were significantly associated with
well-being, particularly patient quality of life so that improving any activity should improve well-being.
Key words: instrumental activities of daily living, dementia, quality of life, carer burden, initiative, performance
Introduction
Losing the motivation or ability to perform
everyday activities is one of the primary symptoms
of dementia (Voigt-Radloff et al., 2012; Giebel
et al., 2016). Everyday activities are categorized
into basic activities of daily living (ADLs),
including bathing and maintaining continence
(Katz et al., 1963), and complex instrumental
activities of daily livings (IADLs), including food
preparation and shopping (Lawton and Brody,
1969). Of these, IADLs deteriorate to a great extent
Correspondence should be addressed to: Clarissa Giebel, School of Health
Sciences, University of East Anglia, Norwich, NR4 7TJ, UK. Phone: +441603-593259. Email: [email protected]. Received 8 Jun 2016; revision
requested 5 Sep 2016; revised version received 22 Sep 2016; accepted 22 Oct
2016.
in the preclinical and early stages of dementia
(Mioshi et al., 2007; Verlinden et al., 2015),
whereas some ADLs deteriorate to a greater extent
in the advanced stages (Giebel et al., 2015).
The limitations that IADL and ADL deficits
can place upon a person with dementia’s (PwD)
life can lead to institutionalization (Afram et al.,
2014) and constitute one of the highest cost
factors in dementia care (Jones et al., 2015).
Hence, promoting independence, well-being, and
management of dementia post-diagnosis are some
of the key priorities of recent governmental
initiatives (Norwegian Ministry of Health and
Care Services, 2007; Department of Health, 2009;
Alzheimer’s New Zealand, 2010).
There is little evidence on the detailed deterioration of IADLs in mild dementia (Griffith
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2
C. M. Giebel et al.
et al., 2003; Peres et al., 2008; Giebel et al.,
2016). The performance of finance management
tasks has received most attention in early dementia
(Griffith et al., 2003; Martin et al., 2013; Chiong
et al., 2014), with available evidence highlighting
difficulties with financial concept knowledge, cash
transactions, bill payment, and cheque book
management, among others (Marson et al., 2000;
Griffith et al., 2003). By understanding which
IADLs are mostly impaired, interventions can
target these IADLs specifically. In particular,
a recent review on the efficacy of cognitive
interventions for everyday activities showed that
targeting individual activities, rather than global
functioning, is more efficacious (Giebel and
Challis, 2015).
One important distinction in the assessment
of IADL abilities is the intention to perform an
activity and the performance itself. In the literature,
this distinction is rarely made and is picked
up specifically in the Interview for Deterioration
in Daily Living Activities in Dementia (IDDD)
(Teunisse et al., 1991). In previous studies on
mild and moderate dementia, variations between
initiative and performance deficits did not emerge
(Teunisse and Derix 1997; Voigt-Radloff et al.,
2012). In contrast, in a previous examination of
mild dementia only, the performance of IADLs
was found to be impaired to a greater extent than
initiation overall (Giebel et al., 2016). However,
one exception to this pattern of deficit lies in
the area of social activities, as carers reported
PwD as lacking the initiative to engage in hobbies
or maintain an active social life. It is important
to evaluate both aspects of behavior separately,
as PwD may be able to perform an activity
but fail to initiate the activity due to a lack
of motivation or through forgetting to perform
the task. Alternatively, PwD may initiate the task
without any prompts but struggle to complete it
successfully. Thus, these two sources of impairment
in everyday function can be very distinct from
one another and may often require different types
of support and interventions, which currently is
generally not available.
Limitations in independence impact negatively
on the PwD’ and carers’ well-being (Martyr et al.,
2014; Sutcliffe et al., 2016), although little is known
as to how individual IADLs are associated with
quality of life (QoL) and carer stress. In a previous
study employing a mildly modified version of the
IDDD, social activities in particular were found
to significantly correlate with PwD and carer wellbeing (Giebel et al., 2016). Indeed, evidence has
highlighted that general social activities, such as
music, singing groups, or art interventions, have
a positive effect on PwD QoL (van der Vleuten
et al., 2012; Camic et al., 2013). It is thus
important to understand which individual activities
are associated with well-being so that interventions
for PwD and their carers can directly target those
activities to improve overall QoL and reduce levels
of stress.
The aims of this study were twofold. The
first objective was to validate the new revised
IDDD2 (R-IDDD2) in a sample of carers of people
with mild dementia, and thus to assess the level
of changes in the initiative and performance of
IADLs. The second objective was to investigate the
relationship between the initiative and performance
of IADLs and carer and PwD QoL, as well as
carer stress. Based on previous findings (Giebel
et al., 2016), it was hypothesized that carers would
report more deficits in the performance than the
initiative of IADLs. Furthermore, social activities
were expected to be negatively associated with carer
stress, whereas overall everyday activity deficits
were expected to be associated with reduced PwD
QoL (Giebel et al., 2016) and reduced carer QoL
(Razani et al., 2014). Evidence about specific
IADL deficits in the early stages can help in the
timely diagnosis of dementia and in the development of interventions targeting initiative and
performance deficits using separate approaches.
Moreover, interventions can be developed that
focus on those activities associated with the
greatest extent with well-being, a primary objective
of national dementia strategies (Department of
Health, 2009; Alzheimer’s New Zealand, 2010;
Alzheimer Nederland, 2012).
Methods
Participants and recruitment
Carers of people with mild dementia were recruited
via convenience sampling through memory clinics
of nine NHS trusts across England and through the
national research directory Join Dementia Research.
Staff and research officers from the Greater
Manchester NIHR Clinical Research Network
identified suitable participants and distributed the
questionnaire. Mild dementia was defined by
having a Mini-Mental State Examination (Folstein
et al., 1975) score of 21 or above (Earnst
et al., 2001), a Montreal Cognitive Assessment
(Nasreddine et al., 2005) score of 15 or above,
or an equivalent score on the third version of
Addenbrooke’s Cognitive Examination (ACE-III)
(Hsieh et al., 2013). A lower cut off of 65
on the ACE-III was considered to classify mild
dementia. Only carers of PwD were considered
whose memory scores were obtained in the past six
months.
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The newly revised interview for deteriorations
Measures
R ev i s e d i n t e rv i e w f o r d et e r i o r at i o n i n
da i ly l i v i n g a c t i v i t i e s i n d e m e n t i a 2
(R-IDDD2)
The R-IDDD2 is based on the original IDDD
(Teunisse et al., 1991) and on a further adapted
version, the R-IDDD (Giebel et al., 2016),
and assesses everyday functioning initiative and
performance. The original IDDD investigates the
initiative to perform (nine items) and the performance (11 items) of individual daily activities,
which can be rated on a scale from “0” (never any
difficulties) to “4” (always difficulties). Although
the IDDD has good construct validity (VoigtRadloff et al., 2012), the questionnaire has poor
concurrent validity and lacks some crucial IADLs
such as medication management and transportation.
Therefore, Giebel et al. (2016) amended the IDDD
further and added activities, including monitoring
own day and following familiar routes. Carers were
also given the opportunity to elaborate on any
difficulties when rating an activity as impaired. This
R-IDDD was tested in an interview format with 20
carers of people with mild dementia.
Findings from this pilot study informed the
further development of the questionnaire into
the R-IDDD2. In particular, carers identified
additional activities, such as recognizing familiar
faces, though it also emerged that some existing
activities needed to be split into two separate items
because responses suggested that two separate
activities were subsumed under the one activity the
original version. For example, preparing a meal was
split into preparing a cold meal and preparing a hot
meal; using the telephone/computer was split into both
telephone use and computer use; transport was split
into public transport and driving. Engaging in hobbies
and maintaining an active social life were merged into
one item as responses on both were similar.
An additional amendment to the R-IDDD was
the addition of subcategories for each activity.
These subcategories emerged through asking carers
in the earlier study (Giebel et al., 2016) how
deficits manifested themselves when responding
“1”–“4” for an activity. In the R-IDDD2, each
IADL performance has three subcategories, each
of which can be rated from “0” to “4.” For
instance, if a PwD reportedly struggles with finance
management, carers are asked to rate performance
on the respective three sub-categories of difficulty
counting change, sorting out bills, and using the cash
point. Table 1 shows the detailed breakdown of each
activity. Some activities may not be relevant to
a PwD, if, for instance, they have never used the
computer or managed the finances, the total scores
for initiative and performance only consider the
3
number of relevant, or completed, activities. For
instance, a sum of 30 on 14 completed or relevant
activities suggests a higher level of impairment than
a sum of 30 on 20 completed or relevant activities.
Therefore, the total score is a percentage score
with a higher percentage indicating higher levels of
impairments.
G e n e r a l h e a lt h q u e s t i o n n a i r e ( G H Q - 1 2 )
The 12-item GHQ-12 (Goldberg and Williams,
1998) measures recent psychological distress. Items
cover the ability to concentrate, confidence, and
worthlessness, which are rated on a four-point
Likert scale. Participants compare the current level
of psychological distress to usual levels and rate
current experiences as similar, greater, or lower.
A higher score indicates greater psychological
distress.
A d u lt c a r e r q ua l i t y o f l i f e
q u e s t i o n n a i r e ( AC - Q o L )
The 40-item AC-QoL (Elwick et al., 2010) assesses
eight areas of carer QoL, including support for
caring, caring choice, and carer satisfaction. Each
item is rated as “never,” “some of the time,” “a
lot of the time,” and “always” by the carer, which
equates to a score between “0” and “3.” A higher
score (maximum 120) indicates better QoL.
Q ua l i t y o f l i f e i n A l z h e i m e r ’ s d i s e a s e
(QoL-AD)
The QoL-AD (Logsdon et al., 1999) is a reliable
measure of PwD QoL either from the PwD or from
a proxy perspective (Hoe et al., 2005). For this
study, the QoL-AD-Proxy version was employed.
The 13 items on the scale include living situation,
physical health, and ability to do things for fun,
which are rated from “1” (poor) to “4” (excellent).
Procedure
Ethical approval was obtained via NRES Ethics
Committee North West (14/NW/0241) prior to
study begin. Prior to the mail out, six carers
provided feedback on the questionnaire design.
For this purpose, the researcher (CG) visited the
carers in their own homes to be present while
they completed the questionnaire. This offered the
possibility for carers to feed back on the clarity
of instructions and color scheme, which could be
amended before the main send out. Completing the
questionnaire took approximately 20–30 minutes,
and the questionnaire was returned via free-post
envelopes. Data were collected from April 2014 to
October 2015.
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4
C. M. Giebel et al.
Table 1. Performance sub-activities on the R-IDDD2
ov e r a l l a c t i v i t y
sub-activit y 1
sub-activit y 2
sub-activit y 3
............................................................................................................................................................................................................................................................................................................................
Washing oneself
Not being thorough enough
Needs reminder
Making tea/coffee
Confusing order of making
hot drink
Leaving the same clothes
on for too long
Missing out areas when
shaving/brushing
Forgetting where things are
stored
Putting clothes on in the
wrong order
Forgetting to do OR doing
less frequently
Forgetting what is already
in the trolley
Confusion while calling
someone
Difficulty using email
Getting lost in the aisles
Dressing
Brushing hair/teeth,
shaving
Shopping
Using the telephone
Using the computer
Preparing a cold meal
Preparing a hot meal
Cleaning house/ doing
repair work
Handling finances
Medication
management
Driving
Taking public
transport
Maintaining active
social life/Engaging
in hobbies
Following familiar
routes
Following current
affairs
Recognizing familiar
faces
Monitoring own day
Monitoring current
activity
Only prepares very simple
meals
Difficulty finding cooking
equipment
Not washing up or cleaning
as well as before
Difficulty counting change
Forgetting to take
medication
More distracted when
driving
Difficulties ordering a taxi
Forgetting what happened
at last social event
Getting lost
Forgetting information
soon after
watching/listening
to/reading the news
Difficulty recognizing
family members
Receiving help to plan the
day
Becoming easily distracted
Analysis
Data were analyzed using SPSS 22 for Windows.
Demographic characteristics and initiative and
performance deficits were assessed using frequency
analyses. Paired samples t-tests were used to compare deficits on the initiative and performance of
individual activities for PwD. Bivariate correlation
analyses were employed to explore the associations
Forgetting numbers
previously known
Difficulty discriminating
between multiple items
on the screen
Difficulty finding items to
prepare meal with
Wrong order of meal
preparation
Setting the table incorrectly
Sorting out bills
Forgetting to order new
medication
Getting lost when driving
Fails to wash hands
appropriately
Forgetting having recently
made a hot drink
Requiring help to put on
clothes
Not doing task properly
(e.g. not using tooth
paste)
Forgetting where items are
in shop
General difficulties using
the telephone
Difficulty using the internet
Wrong order of meal
preparation
Incorrectly using cooking
equipment
Forgetting it is time to do
tasks, such as laundry or
cleaning the bathroom
Using the cash point
Confusion concerning
which medication to take
Forgetting to do key tasks
Having to pay attention for
correct bus stop
Forgetting key aspects of
hobby
Getting confused with bus
times
Will not settle into hobby
Mixed up street/location
names
Difficulty following
complex news stories
Is unhappy when going out
Difficulty recognizing
friends/members of social
club
Difficulty monitoring time
of the day
Forgetting what s/he was
doing once s/he has left
the room
Failing to understand the
significance of news items
Difficulty recognizing
famous people
Lack of awareness of
passage of time
Not completing tasks
appropriately
between initiative and performance of IADLs and
carer burden, carer QoL, and PwD QoL. Construct
validity of the R-IDDD2 was calculated using
Cronbach’s alpha. The level to which initiative
deficits predicted performance deficits for each
activity was analyzed using single linear regression
analysis, wherein carers entered scores on one or
all three sub-categories of an activity, but no total
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The newly revised interview for deteriorations
Table 2. Demographic characteristics and well-being
scores
d e m o g r a ph i c c h a r a c t e r i s t i c s
N = 183
......................................................................................................................................................
Carer gender
Female
PwD gender
Female
Relationship to PwD
Spouse
Child
Other
Dementia type
AD
VD
Mixed
Other
Sole carer
PwD living situation
At home
Other
Living with PwD
Carer age, mean (SD)
PwD age, mean (SD)
Months of symptoms, mean (SD)
Months of care, mean (SD)
Hours/week ADL caring, mean (SD)
Hours/week IADL caring, mean (SD)
Hours/week spent supervising PwD,
mean (SD)
Outcome measures
AC-QoL, mean (SD)
GHQ-12, mean (SD)
QoL-AD, mean (SD)
136 (74.7)
5
PwD had Alzheimer’s disease (61.6%) that was
based on proxy reports and were reported to have
shown symptoms for an average of 36 (+/−28)
months, whereas carers had cared for the PwD
for an average of 25 (+/−25) months. The vast
majority of PwD lived at home, with very few living
in sheltered accommodation.
79 (43.2)
126 (68.9)
47 (25.7)
11 (5.4)
109 (61.6)
21 (11.9)
30 (16.9)
23 (9.6)
148 (82.2)
174 (96.7)
6 (3.3)
132 (73.7)
66.1 (11.1)
76.7 (8.9)
36.2 (28.2)
24.7 (25.3)
11.4 (20.4)
16.2 (28.5)
23.9 (37.3)
72.6 (18.6)
14.0 (5.6)
31.8 (6.9)
Values are N(%), unless otherwise stated.
score, the median of the sub-category scores was
calculated to represent the overall activity score.
For hours caring for ADLs, IADLs, or supervising,
a maximum of 16 hours per day were employed
where carers stated 24-hour care. This procedure
was also used in a previous study (Wübker et al.,
2015). Statistical significance was treated as p <
0.05 across all tests.
Results
Carer and PwD characteristics
In total, 183 carers completed and returned the
questionnaire. Table 2 details the demographic
characteristics of the sample. Carers were on
average 66 (+/−11) years old and mostly female.
Most carers were spouses, lived with the PwD
and were their sole carer. Carers spent more
time supervising than supporting their relative with
ADLs or IADLs. PwD were on average 77 (+/−9)
years old and predominantly male (56.8%). Most
Construct validity of the R-IDDD2
The internal consistency of the R-IDDD2 was
calculated using Cronbach’s alpha for initiative and
performance of ADLs (washing oneself, dressing,
brushing teeth/hair) and IADLs. The R-IDDD2
demonstrated high internal consistency for the
initiative of basic ADLs (α = 0.894), performance
of basic ADLs (α = 0.858), initiative of complex
IADLs (α = 0.934), and performance of complex
IADLs (α = 0.959).
Initiative and performance ratings of
everyday activities
Table 3 outlines initiative ratings. Data were
normally distributed with data skewness ranging between −0.896 and 1.133. Of the 17
activities, using the computer, finance management,
and preparing a hot meal were most impaired.
In contrast, initiating dressing, washing oneself,
preparing a hot drink, and brushing hair or teeth
were least impaired. With an overall initiative rating
of 45.1+/−25.7 of dependency, PwD were overall
partially independent, with 100% indicating full
dependence.
Table 4 outlines the scores on the performance
scale. Data were normally distributed with data
skewness ranging between −0.775 and 1.043. Of
the 20 activities, using the computer, managing
finances and managing medication were subject
to greatest impairment, whereas the majority
of PwD were impaired in monitoring a current
activity, managing finances, following current affairs,
monitoring own day, and engaging in social activities.
Few PwD were reported to experience difficulties
in performing dressing, washing oneself, brushing hair
or teeth, and preparing a hot drink, and recognizing
familiar faces. With an overall performance rating
of 46.9 +/−27.2 of dependency, PwD were overall
partially independent at performing everyday tasks.
Across both initiative and performance of
IADLs, those activities predominantly noted as
“not applicable” were using the computer, driving,
and taking public transport. Shopping and preparing
a hot meal were also frequently noted as “not
applicable” by female carers of male PwD.
Paired samples t-tests revealed that PwD
were significantly less able at performing dressing
(t(170)= −3.593, p < 0.001) and following current
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C. M. Giebel et al.
Table 3. R-IDDD 2 Initiative scores and Pearson correlations with well-being measures
activit y
i m pa i r e d,
n(%)
n
m e a n s co r e
(sd)
AC - Q o L ,
r(p)
GHQ-12,
r(p)
Q o l - A D,
r(p)
............................................................................................................................................................................................................................................................................................................................
Washing oneself
Making tea/coffee
Dressing
Brushing hair/teeth, shaving
Shopping
Using the telephone
Using the computer
Preparing a cold meal
Preparing a hot meal
Cleaning house/doing
repair work
Handling finances
Medication management
Driving
Taking public transport
Maintaining active social
life/engaging in hobbies
Following familiar routes
Following current affairs
Total score
182
181
179
182
178
180
134
175
174
177
89 (48.9)
97 (53.6)
86 (48.0)
85 (46.7)
137 (77.0)
138 (76.7)
109 (81.3)
126 (72.0)
146 (83.9)
139 (78.5)
1.1 (1.3)
1.2 (1.4)
0.9 (1.2)
1.0 (1.3)
2.0 (1.5)
2.0 (1.5)
2.8 (1.6)
1.8 (1.5)
2.5 (1.5)
2.4 (1.5)
−0.327∗∗
−0.287∗∗
−0.293∗∗
−0.336∗∗
−0.159∗
−0.268∗∗
−0.244∗∗
−0.376∗∗
−0.298∗∗
−0.376∗∗
0.292∗∗
0.194∗∗
0.215∗∗
0.350∗∗
0.171∗
0.193∗
0.116
0.245∗∗
0.137
0.225∗∗
−0.402∗∗
−0.385∗∗
−0.442∗∗
−0.410∗∗
−0.336∗∗
−0.307∗∗
−0.234∗∗
−0.443∗∗
−0.363∗∗
−0.434∗∗
174
177
128
151
179
146 (83.9)
126 (71.2)
91 (71.1)
108 (71.5)
138 (77.1)
2.8 (1.5)
2.2 (1.7)
2.4 (1.8)
2.3 (1.7)
2.1 (1.5)
−0.295∗∗
−0.209∗∗
−0.228∗
−0.325∗∗
−0.298∗∗
0.163∗
0.125
0.119
0.254∗∗
0.278∗∗
−0.278∗∗
−0.295∗∗
−0.310∗∗
−0.409∗∗
−0.386∗∗
179
179
182
129 (72.1)
138 (77.1)
1.8 (1.4)
1.9 (1.4)
45.1 (25.7)
−0.318∗∗
−0.287∗∗
−0.379∗∗
0.248∗∗
0.300∗∗
0.286∗∗
−0.413∗∗
−0.351∗∗
−0.474∗∗
Note: ∗ Correlation significant at p < 0.05.
∗∗ Correlation significant at p < 0.01.
Table 4. R-IDDD 2 Performance scores and Pearson correlations with well-being measures
activit y
n
i m pa i r e d,
n (%)
mean
(sd)
AC - Q O L ,
r(p)
GHQ-12,
r(p)
Q O L - A D,
r(p)
............................................................................................................................................................................................................................................................................................................................
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
Washing oneself
Making tea/coffee
Dressing
Brushing hair/teeth,
shaving
Shopping
Using the telephone
Using the computer
Preparing a cold meal
Preparing a hot meal
Cleaning house/ doing
repair work
Handling finances
Medication management
Driving
Taking public transport
Maintaining active social
life/engaging in hobbies
Following familiar routes
Following current affairs
Recognizing familiar faces
Monitoring own day
Monitoring current
activity
Total score
171
170
175
172
79 (46.2)
93 (54.7)
101 (57.7)
71 (41.3)
1.1 (1.4)
1.3 (1.4)
1.3 (1.4)
0.9 (1.3)
−0.373∗∗
−0.436∗∗
−0.405∗∗
−0.417∗∗
0.387∗∗
0.317∗∗
0.301∗∗
0.398∗∗
−0.446∗∗
−0.433∗∗
−0.480∗∗
−0.373∗∗
157
176
114
171
157
171
114 (72.6)
139 (79.0)
91 (79.8)
108 (63.2)
118 (75.2)
122 (71.9)
2.0 (1.6)
2.1 (1.4)
2.6 (1.6)
1.5 (1.5)
2.0 (1.6)
2.0 (1.6)
−0.363∗∗
−0.302∗∗
−0.305∗∗
−0.422∗∗
−0.215∗∗
−0.457∗∗
0.353∗∗
0.383∗∗
0.297∗∗
0.453∗∗
0.289∗∗
0.414∗∗
−0.358∗∗
−0.344∗∗
−0.211∗
−0.433∗∗
−0.310∗∗
−0.465∗∗
171
172
106
140
173
143 (83.6)
135 (78.5)
72 (67.9)
90 (64.3)
141 (81.5)
2.7 (1.5)
2.4 (1.6)
2.1 (1.8)
2.0 (1.7)
2.3 (1.5)
−0.285∗∗
−0.212∗∗
−0.318∗∗
−0.309∗∗
−0.349∗∗
0.350∗∗
0.314∗∗
0.252∗∗
0.409∗∗
0.393∗∗
−0.328∗∗
−0.349∗∗
−0.373∗∗
−0.427∗∗
−0.475∗∗
169
175
175
177
176
117 (69.2)
145 (82.9)
99 (56.6)
146 (82.5)
148 (84.1)
1.8 (1.5)
2.2 (1.4)
1.1 (1.3)
2.2 (1.4)
2.2 (1.3)
−0.345∗∗
−0.325∗∗
−0.312∗∗
−0.341∗∗
−0.298∗∗
0.371∗∗
0.317∗∗
0.473∗∗
0.402∗∗
0.391∗∗
−0.351∗∗
−0.353∗∗
−0.345∗∗
−0.423∗∗
−0.410∗∗
46.9 (27.2)
−0.447∗∗
0.471∗∗
−0.491∗∗
181
Note: ∗ Correlation significant at p < 0.05.
∗∗ Correlation significant at p < 0.01.
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The newly revised interview for deteriorations
7
Table 5. Single logistic regression analyses
s ta n da r d i z e d ß
co n f i d e n c e i n t e rva l s
p-va lu e
R2
............................................................................................................................................................................................................................................................................................................................
Washing oneself
Making tea/coffee
Dressing
Brushing/shaving
Shopping
Using the telephone
Using the computer
Preparing cold meal
Preparing hot meal
Cleaning house/doing repair work
Handling finances
Medication management
Driving
Taking public transport
Maintaining active social life/ Engaging in hobbies
Following familiar routes
Following current affairs
0.758
0.725
0.655
0.699
0.653
0.720
0.606
0.690
0.685
0.738
0.625
0.746
0.767
0.720
0.708
0.702
0.696
0.673–0.875
0.633–0.847
0.624–0.890
0.593–0.810
0.565–0.823
0.602–0.807
0.441–0.737
0.597–0.828
0.604–0.851
0.657–0.871
0.504–0.745
0.615–0.811
0.634–0.893
0.613–0.864
0.608–0.826
0.634–0.869
0.583–0.798
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
0.575
0.526
0.428
0.489
0.427
0.518
0.367
0.476
0.469
0.545
0.390
0.556
0.589
0.519
0.501
0.493
0.484
Regression models for each activity initiative predicting activity performance.
affairs (t(171)= −3.195, p < 0.01) than initiating
these activities, whereas being significantly less
able at initiating cleaning the house/doing repair work
(t(166)= 3.514, p < 0.001), preparing a cold meal
(t(164)= 2.097, p < 0.05), and preparing a hot
meal (t(154)= 3.989, p < 0.001), than on their
performance. Variations in medication management
approached significance with poorer performance
than initiative (t(166)= −1.877, p = 0.062).
Linear single regression analysis (Table 5)
revealed that the initiative of each of the 17 activities
covered in both scales significantly predicted the
performance of an activity, with between 36.7%
(using the computer) and 58.9% (driving) of variance
in the performance explained. In all regression
models, PwD gender was controlled for.
Associations with well-being
Table 3 also shows the correlation coefficients
between initiating activities and well-being. Nearly
all activities were significantly associated with wellbeing, with higher initiative deficits associated with
greater carer burden, and reduced carer and PwD
QoL. Only using the computer, preparing a hot
meal, managing medication, and driving were not
associated with carer burden. Preparing a cold meal
(and dressing as an ADL) was most strongly related
to PwD QoL, brushing teeth or hair to carer burden,
and cleaning the house/doing repair work and preparing
a cold meal to carer QoL. The associations between
activities and the QoL-AD were stronger than those
with the AC-QoL or GHQ-12.
Table 4 also shows the correlation coefficients
between performing activities and well-being.
Performance on every activity was significantly
related to well-being, with higher performance
deficits associated with increased carer burden and
poorer carer and PwD QoL. Engaging in social
activities (and dressing as an ADL) was related most
strongly to PwD QoL, recognizing familiar faces to
carer burden, and cleaning the house/doing repair
work to carer QoL. Performing IADLs was more
strongly related to well-being than initiating IADLs.
Discussion
This study first establishes the R-IDDD2 as a
suitable and valid assessment tool for everyday
functioning. Using this version of the questionnaire, this study provides new insights into the
difficulties of initiating and performing IADLs
in mild dementia, and how these are associated
with the well-being of PwD and their carers.
Several activities were found to be impaired to
the greatest extent both in their initiative and
performance, including using the computer, finance
management, medication management, and driving.
Both using the computer and driving are activities
that are not included in any other IADL instrument
and are generally assessed by direct observation.
To our understanding, no previous studies have
compared these two activities alongside others,
particularly with regard to measuring initiative
to engage. In comparison to using transport,
telephoning, and medication management, one study
showed that finance management impairments at
baseline were a significant predictor of developing
dementia ten years later (Peres et al., 2008).
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8
C. M. Giebel et al.
Difficulties in medication management have also
been reported to be among the most prominent
(Giebel et al., 2016), although research mostly fails
to distinguish between medication management and
keeping appointments (Brown et al., 2011; Martyr
et al., 2012). Therefore, the R-IDDD2 and its
use in the current study provide a more detailed
assessment of individual IADL difficulties than
previous tools and their application have allowed.
Consistent with our hypothesis, some activities
showed significant variations between their initiative and performance, although most activities
reported similar impairment across the two
measures. Although multiple tests of comparison
with the initiative and performance might have
increased the Type I error, the purpose of this study
was to provide a first validation of the R-IDDD2,
and applying Bonferroni correction to the analyses
would have increased the Type II error considering
the number of tests of comparisons performed.
The variations evidenced here can have important
implications for the effective management of
dementia. Most non-pharmacological interventions
on everyday functioning focus on global IADLs or
ADLs, or on some selected activities (Clare et al.,
2000; Kurz et al., 2009; Giebel and Challis, 2015).
These fail to distinguish between the initiative and
performance of activities. However, findings from
this study distinguishing between initiative and
performance deficits suggest that PwD might either
need better “triggers” (to encourage initiative) or
better training or support (to improve performance)
in order to ensure that functioning and independent
living are optimized. Across the sample, cleaning/doing repair work and preparing a hot or cold
meal were impaired to a greater extent in their
initiative than their performance. This suggests
that interventions targeting structured training by
teaching, for example, the individual steps of those
activities would prove minimally effective. Instead,
PwD need to be provided with effective triggers,
in order to help initiate those tasks. This could
be achieved by employing simple memory aids,
such as specific alarms (Gibson et al., 2015) or
maybe simply by using lists and signs. In contrast,
for dressing, following current affairs, and medication
management, triggers would be less effective, as
the performance is impaired to a greater extent.
Thus, PwD require structured training to improve
performance on the individual steps of those tasks.
This might be achieved by structured cognitive
interventions, which could address the specific
cognitive deficits underpinning the impairment in
performance of activities. It is worth noting that
patterns of everyday functioning deficits in PwD
can vary considerably across individuals, even at the
early stages of dementia. Therefore, the approach of
using either triggers or training needs to be adapted
to the individual IADL deficits of PwD.
Overall, there appears to be no clear message
as to whether initiative or performance deficits
are more prominent in early dementia. This
corroborates previous evidence obtained with
mild-to-moderate dementia populations (Teunisse
et al., 1991; Voigt-Radloff et al., 2012). One
possibility for not finding clearer distinctions
between initiative and performance could be the
presence of significant individual differences across
PwD as mentioned above. Old age and its increased
likelihood of comorbidities might have been a
biasing factor in this study, considering also that
PwD were on average ten years older than carers.
Furthermore, levels of everyday functioning are
associated with depression, physical limitations,
differing cognitive deficits, and environmental
modifications (Fauth et al., 2013; Liu-Seiffert et al.,
2015). These were not assessed in this study, so
as to not overburden carers, and hence, these
unexplained factors may have played a role in IADL
activity. Future research should investigate how
these potentially biasing factors might differentially
influence initiative and performance.
In support of our second hypothesis, the
majority of IADLs were strongly associated with the
well-being of both carers and PwDs. Engaging in
social activities was particularly strongly associated
with PwD QoL, consistent with previous evidence
(Giebel et al., 2016), suggesting that the loss
of one’s capacity for social engagement has a
particularly negative effect on the well-being of
PwD. The majority of studies employ proxy reports
for everyday functioning and/or well-being (Mioshi
et al., 2009; Beerens et al., 2015), similar to
this study so that future research should evaluate
whether there are variations in PwD perspectives
of well-being. Although nearly all activities were
significantly associated with well-being, it would be
interesting to explore this relationship further in the
more advanced stages of dementia. As PwD and
carers become more accommodated to their new
circumstances and caring roles, it might be the case
that other activities impact on the well-being than
those in the initial early stages. This is based on the
hierarchy of daily activity decline reported first by
Reisberg et al. (1984).
Conclusions
This study established the R-IDDD2 as a
comprehensive tool that evaluates several layers of
everyday functioning. Its application here provides
novel insights into impairments in initiating and
performing IADLs in mild dementia, and how
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The newly revised interview for deteriorations
these could be effectively managed. As opposed
to previous scales (i.e. Lawton and Brody, 1969;
Sikkes et al., 2012), the purpose of the R-IDDD2
is to focus on individual activities and sub-activities.
Given this level of detail, the R-IDDD2 appears
to be a suitable, and internally consistent, tool in
capturing subtle changes in everyday functioning,
which might not only help in the diagnosis of
very mild dementia, but also in possibly identifying
specific deficits suitable for interventions. Findings
from this study suggest that interventions to
improve functioning need to address initiative and
performance deficits in a targeted way, by either
employing triggers or providing structured training
or support. Future research should also explore
how well-being is related to individual IADLs in
more advanced stages of dementia and how specific
subtypes of dementia may experience different
levels of impairments.
Conflict of interest
None.
Description of authors’ roles
CG collected the data, performed statistical
analysis, and wrote the manuscript. CG and DM
designed the study. DM and DC provided feedback
to drafts of the manuscript.
Acknowledgments
We wish to thank staff at the following NHS
Trusts for their support in recruiting participants:
Catherine Turton, Joanne Woodward at 5 Boroughs
Partnership; Ritchard Ledgerd, Alexandra Feast,
Charlotte Stoner, Dr Joanne Rodda at North East
London; Paula Harman, Dr Farhad Huwez at
Southend University Hospital; Joanne Tomkins,
Laura Lord, Dr Tarik Qassem at Black Country
Partnership; Olga Balazikova, Sarah Hamilton,
Ramin Nilforooshan at Surrey and Borders
Partnership; Lisa Wilkinson-Guy, Prof George
Tadros at Heart of England; and Kim Thompson,
Leigh Franks, Dr Rashi Negi at South Staffordshire
and Shropshire Healthcare. We also wish to thank
Division 4 Greater Manchester NIHR Clinical
Research Network for recruiting participants to
this study through Manchester Mental Health
and Social Care and Greater Manchester West
NHS Trusts. Our thanks also extend to the
JoinDementiaResearch Network for allowing us to
recruit carers through their network. This paper
presents independent research supported by the
9
National Institute for Health Research (NIHR),
under its Programme Grants for Applied Research
programme (Grant Reference Number: DTC-RPPG-0311-12003), and forms part of the doctoral
thesis of CG.
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