Aging & Mental Health, 2015

Vol. 19, No. 1, 63
71, http://dx.doi.org/10.1080/13607863.2014.915920

Activities of daily living and quality of life across different stages of dementia: a UK study
Clarissa M. Giebela,b*, Caroline Sutcliffeb and David Challisb
a
School of Psychological Sciences, University of Manchester, Manchester, UK; bPersonal Social Services Research Unit, University of
Manchester, Manchester, UK
(Received 14 November 2013; accepted 11 April 2014)

Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs),
and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at
each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different
stages, which were the two objectives of this study.
Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care.
Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs
and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number
of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL.
Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild
dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the
degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe
dementia. Results of the regression analysis showed that total ADL performance however was only impacting on QoL in
moderate dementia.
Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to
address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are
important to consider when trying to improve or maintain QoL at different stages.
Keywords: dementia; activities of daily living; quality of life; carers; depression

Introduction everyday functioning across a group of people with differ-

Improving the management of dementia symptoms and
care, which weighs heavily on a country’s health and
social care budget (Gustavsson et al., 2010), has become
of international importance with the UK planning to hold
the first G8 dementia summit (Department of Health,
2013). One of the most prevalent characteristics of
dementia is the loss of ability to perform daily activities.
With everyday functioning categorised into complex
instrumental activities of daily living (IADLs), including
finances, household tasks, laundry, meal preparation,
medication management, shopping, telephoning and
transport (Lawton & Brody, 1969), and basic activities of
daily living (ADLs), including bathing, continence, dress-
ing, feeding, toileting and transfer (Katz, Ford, Mosko-
witz, Jackson, & Jaffe, 1963), the former are found to
decline from the early and pre-diagnostic stages onwards
(Mioshi et al., 2007). In contrast, the ability to perform
ADLs deteriorates to a greater extent during the later
stages of dementia (Takechi, Kokuryu, Kubota, &
Yamada, in press). Although the literature agrees on this
differential decline, only a few studies provide detailed
evaluations on deterioration of individual IADLs and
ADLs. Instead, reports focus on global performance
(Sikkes et al., 2011); address only some activities (Bier
et al., 2013); incorporate people with dementia (PwD) and
cognitively impaired older adults within one group (Bar-
berger-Gateau, Dartigues, & Letenneur, 1993); or assess
ent stages of dementia yet fail to distinguish between
these (Earnst et al., 2001). Furthermore, in the Canadian
Study on Aging (Canadian Study of Health and Aging
Working Group, 1994; Ostbye, Tyas, McDowell, &
Koval, 1997), performance was assessed for individual
ADLs in mild and moderate dementia, albeit no informa-
tion was provided on the Mini Mental State Examination
(MMSE) scores or similar to understand the ranges of
cognitive impairment encompassed in the two dementia
groups. These examples illustrate the paucity of informa-
tion about how performance on individual activities dete-
riorates during the course of dementia as a result of their
significant relationship with memory and other cognitive
functions (Cahn-Weiner, Boyle, & Malloy, 2002; Gaugler
et al., 2013). Hence, further investigation is warranted.
Considering both the decline of ADLs across all three
stages of dementia and their sparse evidence base, this
study solely focuses on basic ADLs as opposed to IADLs.
With deficits in performing daily activities causing
reduced independence, cognitive interventions are devel-
oped to address these, whereby improved quality of life
(QoL) is one way of measuring the interventions’ effec-
tiveness. Although PwD may display limited awareness of
their deficits (Trigg, Watts, Jones, & Tod, 2011) and
therefore rate their QoL higher compared to proxies
(Vogel, Mortensen, Hasselbalch, Andersen, & Waldemar,
2006), dementia is associated with reduced well-being

*Corresponding author. Email: clarissa.giebel@manchester.ac.uk

Ó 2014 Taylor & Francis

64 C.M. Giebel et al.
from both PwD and carer perspectives (Addington-Hall &
Kalra, 2001; Hoe et al., 2009). In particular, ADL perfor-
mance has been shown to be a crucial determinant of QoL
across different stages of dementia (Andersen, Wittrup-
Jensen, Lolk, Andersen, & Kragh-Sorensen, 2004; Ballard
et al., 2001) as well as pre-diagnosis (Teng, Tassinyom, &
Lu, 2012). However, studies fail to examine the impact of
individual daily activities and focus on global ADL
dependency instead. In order to increase QoL as part of an
intervention, it is imperative to assess individual activi-
ties, as transfer, for example, may impact to a smaller
degree than feeding on well-being. Considering that daily
functioning declines in relation to cognitive performance
(Farias, Harrell, Neumann, & Houtz, 2003), different
stages of dementia are characterised by deterioration of
different ADLs. Therefore, it is also important to establish
which individual activities influence QoL across different
stages of dementia, particularly since interventions should
be tailored to the appropriate stage for individual PwD.
In view of the existing evidence, this study aimed to
address two aspects which have previously received little
or no attention. The first was to evaluate basic ADL
impairments in detail across different stages of dementia.
The second was to assess the impact of basic ADL perfor-
mance, in addition to psychopathology, depressive symp-
tomatology and cognition, on QoL across mild, moderate
and severe dementia. With ADLs reported to decline dur-
ing later stages of dementia compared to IADLs (Suh, Ju,
Yeon, & Shah, 2004), it might be expected that ADLs
impact on QoL only in moderate and severe dementia.
This study therefore addresses this unknown area. Knowl-
edge of detailed ADL impairments can support the tar-
geted clinical diagnosis of dementia in the first instance,
but also can support the targeted development of interven-
tions at different stages of dementia. Similar importance
may be attributed to understanding the factors impacting
on QoL depending on the stage of dementia.
Methods
Design
This paper reports on the data collected in North West
England as part of a larger European cross-sectional study
conducted in eight countries (Estonia, Finland, France,
Germany, the Netherlands, Sweden, Spain and UK) on
patterns of transition of PwD from community living to
care home residence. The protocol and study design has
been published elsewhere (Verbeek et al., 2012).
Participants
The sample consisted of two groups of PwD 65 years or
older who were either: living at home, in receipt of com-
munity services and deemed at risk of admission to a care
home within six months; or who had in the previous three
months been admitted to a care home on a permanent
basis. Eligibility criteria included: (1) a diagnosis of
dementia; (2) a score of 24 or less on the Standardised
Mini Mental State Examination (S-MMSE); (3) presence
of an informal carer either living with the PwD or visiting
at least twice a month. Possible community cases were
identified through Community Mental Health Teams, spe-
cialist day care centres, and memory clinics in several
localities. Managers from participating residential and
nursing homes across North West England identified
recent admissions.
Procedures
Comprehensive face-to-face structured interviews were
conducted with the PwD and informal carers in their own
homes. Interviews undertaken in the care homes also incor-
porated information from a staff member acting as a best
informed proxy. These were completed by trained inter-
viewers qualified at least to degree level. Prior to data col-
lection, ethical approval was obtained (11/NW/0003).
Written informed consent was sought from both PwD and
their informal carers. For PwD who lacked the capacity to
sign for themselves, their informal carer acted as a personal
consultee on their behalf (Department of Health, 2008).
Measures
Cognitive functioning was assessed by the MMSE (Fol-
stein, Folstein, & McHugh, 1975), a widely used screening
measure of cognitive performance often used to distin-
guish between different stages of dementia. The European
project used an amended version (S-MMSE) (Molloy,
Alemayehu, & Roberts, 1991). In this study, a score of 20
to 24, out of 30, was used to classify mild dementia;
scores from 10 to 19 moderate dementia; and zero to nine
to indicate severe dementia. Similar cut-points have been
previously employed elsewhere (Earnst et al., 2001).
Everyday functioning was assessed via the Katz Index
of Independence in Activities of Daily Living (Katz et al.,
1963), which measures performance in six activities: bath-
ing, dressing, toileting, transfer, continence and feeding.
Each activity was rated as no impairment; some
impairment; or full impairment. Each activity was scored
dichotomously with a score of ‘1’ indicating indepen-
dence and a score of ‘0’ indicating dependence. Bathing,
dressing and feeding were scored 1
1
0 which meant
that no impairment or some impairment both scored ‘1’.
Toileting, transfer and continence were scored 1
0
0
which meant that no impairment was scored as ‘1’ and
some or full impairment was scored ‘0’. With a maximum
score of 6, a higher score indicates greater independence
across task domains.
QoL was measured by the Quality of Life in
Alzheimer’s Disease (QoL-AD) rating scale (Logsdon,
Gibbons, McCurry, & Terri, 1999), which has good to
very good psychometric properties (Thorgrimsen et al.,
2003). Ten domains of daily life are rated from poor, fair,
good to excellent. The rating scale was completed both by
the PwD and by proxy to provide the paid or informal
carer’s perspective (Thorgrimsen et al., 2003).
Psychopathology in dementia was measured with a
short form of the Neuropsychiatric Inventory (Cummings
et al., 1994), the Neuropsychiatric Inventory Questionnaire
 Aging & Mental Health 65

(NPI-Q) (Kaufer et al., 2000). The inventory is used to Table 1. Demographic characteristics and outcome measures.
evaluate the prevalence and severity of 12 behavioural Mild Moderate Severe
symptoms, including agitation and appetite disorders. (n ¼ 21) (n ¼ 57) (n ¼ 44)
Severity of symptoms is rated from ‘1’ to ‘3’. The NPI-Q
has high reliability and validity (Kaufer et al., 2000). Mean (SD)
Depressive symptomatology was measured using the PwD Age 84 (7.1) 83.7 (6.3) 82.6 (6.5)
Cornell Scale for Depression in Dementia (CSDD) (Alex- Carer Age 57 (16) 53.9 (16.8) 53.6 (16.9)
opoulus, Abrams, Young, & Shamoian, 1988). The scale S-MMSE 22 (1.3) 14 (2.5) 4.1 (3)
addresses mood-related signs, behavioural disturbance, QoL-AD-C 29.4 (6.2) 30.7 (6.3) 28.6 (5.4)
physical signs, cyclic functions and ideational distur- QoL-AD-PwD 37.3 (4.7) 35.2 (5.5) 35.9 (5.5)b
bance, whereby higher ratings indicate increased symp- NPI-Q 9.2 (5.7) 9.8 (7.4) 10.7 (6.7)
tom severity. Each of the 19 items can be rated from ‘0’ CSDD 7.2 (6.1) 6.9 (5.8) 8.4 (5.6)
(absent) to ‘2’ (severe), with ratings above 10 indicating
N (%)
probable depression. The CSDD is found to be a suitable
Setting
tool for the assessment of depression in dementia (Knap-
Care home 5 (23.8) 28 (49.1) 26 (59.1)
skog et al., 2011).
Living at home 16 (76.2) 29 (50.9) 18 (60.9)
The Charlson Comorbidity Index was used to measure
Dementia type
possible comorbidities (Charlson, Pompei, Ales, &
AD 5 (35.7) 19 (43.2) 20 (48.8)
MacKenzie, 1987). Originally designed to determine mor-
VD 6 (42.9) 21 (47.7) 12 (29.3)
tality from a range of comorbid physical diseases, the
AD mixed VD 2 (14.3) 3 (6.8) 3 (7.3)
Index consists of 19 possible comorbid health conditions
FTD 1 (7.1)
1 (2.4)
and is a widely used and validated measure (Hall, 2006).
DLB
1 (2.3) 4 (9.8)
Demographic information including age, gender, liv-
ADLs
ing situation, health status and dementia type was col-
Bathinga 13 (61.9) 49 (86) 42 (95.5)
lected regarding the PwD and informal carers. The PwD
Dressinga 9 (42.9) 49 (86) 43 (97.7)
completed the S-MMSE and the QoL-AD-PwD. Informal
Toiletinga 1 (4.8) 23 (40.4) 33 (75)
carers of PwD living at home completed the proxy QoL-
Transfera 2 (9.5) 14 (24.6) 20 (45.5)
AD-C, the NPI-Q, the CSDD, the KATZ ADL scale and
Continencea 14 (66.7) 33 (57.9) 34 (77.3)
the Charlson Index. In the care home setting, each of these
Feedinga 1 (4.8) 13 (22.8) 25 (56.8)
carer measures was completed by a member of staff
Total 4.6 (1) 3.5 (1.7) 2.2 (1.7)
responsible for the care of the PwD.
Note: AD ¼ Alzheimer’s disease. ADL ¼ Activities of Daily Living.
CSDD ¼ Cornell Scale for Depression in Dementia. DLB ¼ dementia
Data analyses with Lewy bodies. FTD ¼ frontotemporal dementia. S-MMSE ¼ Stand-
ardised Mini Mental State Examination. NPI-Q ¼ Neuropsychiatric
Data analyses were performed using SPSS 20. Demo- Inventory Questionnaire. PwD ¼ person with dementia. QoL-AD-C ¼
graphic characteristics were analysed using frequency dis- Quality of Life in Alzheimer’s Disease, carer version. QoL-AD-PwD ¼
Quality of Life in Alzheimer Disease, person with dementia version. VD
tributions and analysis of variance (ANOVA) was ¼ vascular dementia.
a
employed to compare means between demographics and Number of patients impaired on respective activity (%). b26 cases
QoL ratings across dementia groups. The degree of ADL missing.
impairment within and across dementia stages was
assessed through frequency analyses. Pearson correlation
analyses were employed to assess associations between the S-MMSE, the Katz ADL scale and the QoL-AD-C,
QoL and demographics and test scores, including Age; the three most relevant scales, and were included in this
Gender; Dementia type; NPI-Q; CSDD; Bathing; Dressing; study. Of these, 63 (51.6%) were living at home. PwD
Toileting; Transfer; Continence; Feeding; Setting and had an average age of 83 (6.5) and the majority were
ADLtotal. Four multiple regression analyses were con- female (71.3%). Carers were on average 54 (16.6) years
ducted, one for the total sample and one for each stage of old. Table 1 displays demographic and outcome character-
dementia, to assess the degree of variability in QoL istics of the three groups. ANOVA showed that neither
explained by different factors The QoL-AD-C was demographic characteristics (FPwD Age[2, 119] ¼ .46, p ¼
employed as the outcome measure as there was a large .634; FCarer Age[2, 118] ¼ .32, p ¼ .724; FDementia type[2,
number of missing ratings for the QoL-AD-PwD particu- 96] ¼ .16, p ¼ .854) nor QoL ratings (FQoL-AD-C[2,
larly in the severe dementia group. Furthermore, more 119] ¼ 1.53, p ¼ .221; FQoL-AD-PwD[2, 89] ¼ 1.19, p ¼
measures were correlated with the QoL-AD-C. Only the .309) differed significantly across the different stages of
total ADL score was employed within multiple regression dementia.
analyses due to collinearity between individual ADL items.

ADL impairments
Results As shown in Figure 1, level of performance varied
Of the 157 UK participants that were interviewed at base- between each ADL and across dementia stages. The high-
line for the European project, 122 had complete data on est levels of functioning were demonstrated in mild as
66 C.M. Giebel et al.

Figure 1. Specific ADL impairments at different dementia stages: A ¼ no assistance; B ¼ some assistance; C ¼ full assistance.
Note: The y-axis shows the percentage of PwD of the total sample either receiving no, some or full assistance.

compared to moderate and severe dementia and in relation
to activities, such as dressing, toileting, transfer and feed-
ing. However, performance of some ADLs appeared poor
from the early stages onwards, such as bathing, dressing
and continence. Unsurprisingly, performance on these
ADLs was lower in the moderate and severe stages of
dementia. Toileting, transfer and feeding in contrast
appeared to be less impaired across the different dementia
stages. In respect of severe dementia, people at this stage
required the highest degree of assistance compared to
mild and moderate dementia for each activity. In addition,
as expected, severe, as opposed to mild and moderate,
dementia is shown to have the lowest proportion of people
with intact functioning.
Table 2 shows that there is an increasing number of
ADL impairments as the disease progresses. In particular,
in the mild dementia group, only one person had impair-
ments in four activities, with none displaying impairment
in more than four activities. The majority in this group
required assistance with three ADLs (38.1%). In the
 Aging & Mental Health 67

Table 2. Number of impaired ADLs across dementia stages.
Mild (n ¼ 21) Moderate (n ¼ 57) Severe (n ¼ 44)
0 3 (14.3) 3 (5.3)
were significantly negatively associated with QoL-AD-C,
1 6 (28.6) 6 (10.5) 1 (2.3)
2 3 (14.3) 13 (22.8) 5 (11.4)
3 8 (38.1) 11 (19.3) 3 (6.8)
4 1 (4.8) 10 (17.5) 10 (22.7)
5
8 (14) 13 (29.5)
6
6 (10.5) 12 (27.3)
Note: All values in n (%); impairment describes partial or full depen-
dency on ADL.
moderate stage, impairments ranged from zero to six
activities with a greater number of impairments. The
severe dementia group had the highest number of ADL
impairments, with the majority experiencing problems
with five (29.5%) or six (27.3%) activities. All PwD
within this group displayed ADL impairments.
Pearson correlation analyses showed that each ADL
was significantly correlated to cognitive functioning in
the total sample, as measured by the S-MMSE (rBathing ¼

.423, p ¼ .000; rDressing ¼
.457; p ¼ .000; rToileting ¼

.477, p ¼ .000; rTransfer ¼
.306, p ¼ .001; rContinence ¼

.265, p ¼ .003; rFeeding ¼
.403, p ¼ .000; rADLtotal ¼
.495, p ¼ .000). The Charlson Index, a measure of comor-
bidity, was used in this study to record a range of co-mor-
bid conditions such as heart disease, stroke, diabetes, etc.,
in the PwD. The total score for the Index was significantly
correlated neither to ADLtotal nor to QoL-AD-C.
Factors impacting on quality of life
Pearson correlation analyses showed that there were a
number of significant associations between individual
ADLs and the QoL-AD-C but very few with the QoL-
AD-PwD, both in the total sample and at each stage of
dementia (Table 3). In the total sample, four ADLs, carer
age, setting, psychopathology and depression were signifi-
cantly related to the QoL-AD-C compared to only
‘Transfer’ associated with the QoL-AD-PwD. In mild
dementia, carer age, psychopathology and depression
whereas only ‘Continence’ was associated with QoL-AD-
PwD. In moderate dementia, carer age, setting, psychopa-
thology, depression, ‘Feeding’ and ADLTotal were signifi-
cantly associated with QoL-AD-C, with no associations
found for QoL-AD-PwD. In severe dementia, psychopa-
thology, depression, ‘Toileting’, ‘Transfer’, ‘Feeding’ and
ADLtotal were significantly related to QoL-AD-C, whereas
only ‘Transfer’ was significantly related to QoL-AD-
PwD. Based on the higher number of correlations between
the QoL-AD-C and individual ADLs and other measures,
this scale was selected as the outcome measure for the
multiple regression analyses.
Predictors of QoL
Four multiple regression analyses were performed (see
Table 4), in which setting, NPI-Q, CSDD and ADLtotal
were entered as predictor variables. Setting and ADLtotal
were included in all multiple regression models, because
setting controlled for the possibility of there being system-
atically different ratings between paid and informal carers
and because ADL performance was the primary focus of
this study.
As Table 4 shows, the amount of variation accounted
for by the factors included in all four regression models
differed by model, explaining between 34.1% and 49.2%
of the variation in QoL. With regard to measures of psy-
chopathology and depression, only one variable was
included in each model due to their significant association
with each other. Higher scores on these measures were
associated with lower QoL of the PwD as perceived by
the carers. With regard to setting and ADLtotal, both fac-
tors were only significant in the total and the moderate
dementia samples, where living in a care home was found
to increase QoL. Little variation was explained by ADL

Table 3. Pearson correlation coefficients in relation to quality of life measures.

Carer Dementia
age Setting type MMSE NPI-Q CSDD ADL1 ADL2 ADL3 ADL4 ADL5 ADL6 ADLTotal

Total sample
QoL-AD-C
.229 .285
.143 .085
.529
.603
.096
.165
.250
.271
.290
.307 .313
QoL-AD-PwD .100
.105
.152 .108 .002
.128
.079
.124
.120
.216
.111
.084 .175
Mild dementia
QoL-AD-C
.505 .409
.266 .027
.466
.636 .111
.266 .060 .248
.388 .244 .228
QoL-AD-PwD
.077
.060
.171
.365
.070
.068
.057 .149 .083 .015
.533
.450 .192
Moderate dementia
QoL-AD-C
.248 .348
.196 .001
.612
.594
.120
.098
.238
.236
.251
.291 .287
QoL-AD-PwD .071 .012
.082 .053 .077
.164 .030
.168
.107
.129
.064 .056 .117
Severe dementia
QoL-AD-C
.073 .199
.067
.003
.424
.584
.168
.240
.356
.432
.235
.483 .390
QoL-AD-PwD .344
.390
.360 .317
.194
.108
.296
.112
.185
.551 .098
.107 .257

Note: ADL1 ¼ bathing. ADL2 ¼ dressing. ADL3 ¼ toileting. ADL4 ¼ transfer. ADL5 ¼ continence. ADL6 ¼ feeding. Age either describes the informal
or formal carer’s age when correlated with the QoL-AD-C or the PwD’s age when correlated with the QoL-AD-PwD.

p < .05. p < .01.
68
Table 4. Multiple regression analyses
predictors of QoL-AD-C.
Total sample
List of variables R2 change b p R2 change

Setting .079 .235 .002


NPI-Q / / /

CSDD .317
.498 .000 .405
ADLtotal .050 .239 .002


R2 total .447 .405
Note: ADL1 ¼ bathing. ADL2 ¼ dressing. ADL3 ¼ toileting. ADL4 ¼ transfer. ADL5 ¼ continence. ADL6 ¼ feeding. D ¼ dementia. ‘
’ ¼ included
into the regression model but excluded by SPSS. ‘/’ ¼ not included into the model after initial analyses indicated that including NPI-Q and CSDD makes
NPI-Q an insignificant factor because of the amount of variance both share. Setting includes either living at home or in a care home.

p < .05. p < .01.
performance, which was only 7.8% in moderate dementia,
and not significant in the mild and severe stages. How-
ever, an overall single regression analysis showed that
ADLtotal explained a significant proportion of variance in
severe dementia (R2 ¼ .152, p < .01; b ¼ .390, p < .01).
Within all four regression models, errors were normally
distributed and all assumptions were met.
As a result of collinearity between individual activi-
ties, ADLtotal was used within the multiple regression
models, although no significant correlation between ADL-
total and QoL-AD-C was found. Individual activities were
also tested for their effect on QoL through single regres-
sion analyses in the total and severe dementia sample
based on the number of ADLs found to be significantly
correlated with QoL. In the former sample, Toileting
(R2 ¼ .063, p < .01; b ¼
.250, p < .01), Transfer
(R2 ¼ .073, p < .05; b ¼
.271, p < .01), Continence
(R2 ¼ .084, p < .01; b ¼
.290, p < .01) and Feeding
(R2 ¼ .094, p < .01; b ¼
.307, p < .01) were significant
predictors of QoL, whereby Dressing (R2 ¼ .027, p ¼
.069; b ¼
.165, p ¼ .069) failed to reach significance. In
severe dementia, activities were more predictive of QoL,
including Toileting (R2 ¼ .126, p < .05; b ¼
.356, p <
.05), Transfer (R2 ¼ .187, p < .01; b ¼
.432, p < .01)
and Feeding (R2 ¼ .234, p < .01; b ¼
.483, p < .01).
For each activity, a higher level of impairment was associ-
ated with lower PwD well-being as perceived by the carer.
Discussion
In respect of the first study aim, findings demonstrate
declining ADL performance over the course of dementia
that varies between individual activities. Confirming the
trend in the literature (Suh et al., 2004), PwD at the mod-
erate and severe stages experience more problems in ADL
performance than at the mild stage. Considering that ADL
performance starts to decline differentially in the mild
stages and is followed by further impairment as the dis-
ease progresses, it would seem important to particularly
focus on mild dementia and identify interventions to
address the loss of function at an early stage. Cognitive
interventions to improve or maintain everyday function-
ing in mild dementia have received a growing interest
with different levels of efficacy reported (Avila et al.,
C.M. Giebel et al.
QoL-AD-C
Mild D Moderate D Severe D
b p R2 change b p R2 change b p


.108 .248 .025





.305
.511 .000 / / /

.636 .003


.341
.584 .000

.078 .290 .008



.492 .341
2004; Kurz et al., 2012). Interestingly, the performance of
toileting, transfer and feeding are intact in nearly all
patients in mild dementia, with some deterioration
reported for the later stages. It could be argued that tasks
such as feeding rely predominantly on physical feedback,
that is, the physical sensation of feeling hungry. Although
physical sensations may function as a reminder for per-
forming each ADL, bathing, dressing and continence are
impaired to a greater extent at the early stages of demen-
tia. Therefore, the extent to which ADLs rely on physical
feedback may vary. With a very sparse evidence base,
bathing was previously suggested to be impaired the most
in mild and moderate dementia, followed by dressing
(Ostbye et al., 1997), and similarly in a mixed sample of
moderate and severe dementia (Galasko et al., 2005). This
underlines how this study takes a step further into address-
ing performances for all stages of dementia individually.
Of further relevance in explaining variations in ADL
performance could be their relationship to cognition. With
all ADLs significantly related to the S-MMSE score,
global cognition may not be specific enough. Instead,
each activity may be related to different cognitive func-
tions which deteriorate during different stages. In the case
of IADLs, finance management for example has been
linked to short-term memory in mild and moderate
dementia (Bier et al., 2013), and problems with medica-
tion adherence have been associated with poor prospec-
tive memory, that is, the ability to remember to perform
an action at a specific event (such as buying the newspa-
per when passing the shop) or at a specific time (such as
taking medication at 8 am), in schizophrenia (Lam, Lui,
Wang, Chan, & Cheung, 2013). However, no literature to
date has explored how individual ADLs depend upon dif-
ferent cognitive domains in dementia, despite a growing
interest in this relationship (Shankle et al., 2013). This
could offer further insights into why people with mild
dementia are less capable in performing certain ADLs as
opposed to others and would provide a platform to explore
potential interventions targeting the cognitive foundations
of ADL deficits.
With regard to the second aim, individual and global
ADL performance impacts on QoL for both carer and
PwD ratings. However, there are more associations
between everyday functioning and proxy QoL ratings,
 Aging & Mental Health
which may be attributable to limited deficit awareness in
dementia (Clare et al., 2012; Trigg et al., 2011). Indeed,
PwD rated their QoL higher across all three stages of
dementia. Banerjee et al. (2006) showed that cognitive
performance is unrelated to PwD-based QoL ratings,
which this study confirms. It further indicates the presence
of anosognosia, or the unawareness of deficits, early on.
Interestingly, the number of ADLs that are related to QoL
varies, depending on cognitive status. Although all activi-
ties, except bathing and dressing, are associated with QoL
in the total sample, carers appeared not to perceive such a
relationship in mild and only to a small degree in moder-
ate dementia. In contrast, performing activities of toilet-
ing, transfer and feeding were regarded as important
determinants in severe dementia, which seems plausible
considering the amplification of impairments in the later
stages (Arrighi, Gelinas, McLaughlin, Buchanan, &
Gauthier, 2013). Further supporting the lack of relation-
ship in mild dementia, Sousa et al. (2013) reported that
everyday performance impacted neither on carer-based
nor on PwD-based perceptions of QoL. With previous
research identifying ADL as a significant contributor to
QoL (Andersen et al., 2004; Kurz, Scuvee-Moreau, Rive,
& Dresse, 2003), the results of this study highlight the
importance of exploring this relationship at different
stages of dementia.
Considering the similarity of proxy and PwD QoL rat-
ings, it was important to understand the individual factors
impacting on QoL across mild, moderate and severe
dementia. Regarding the earlier hypothesis, individual
ADL performance appears to impact significantly on
well-being in moderate and severe but not in mild demen-
tia. In particular, individual ADL performance in the
severe stages explains a greater percentage of QoL varia-
tion, which lends further support to the hypothesis. Across
the different stages of dementia, QoL is primarily
impacted upon by depression and neuropsychiatric behav-
iour. This is supported by previous evidence (Hoe et al.,
2009; Shin, Carter, Masterman, Fairbanks, & Cummings,
2005), although different stages of dementia have previ-
ously not been compared with each other. Global ADL
performance is another significant predictor of QoL, but
only in the total sample and moderate stage. It is unex-
pected to find this pattern for severe dementia, yet without
taking into account depression, ADL performance
markedly predicted well-being in a single regression anal-
ysis. This suggests that depression already explains a sig-
nificant proportion of the variance in QoL also explained
by ADLs. One possible explanation for this effect to only
occur in severe dementia is that the majority of these peo-
ple lived in care homes, where paid carers provided rat-
ings for each measure. Addington-Hall and Kalra (2001)
showed that proxy ratings differ by health profession and
by carer employed, which may have been influenced in
this study by the larger proportion of time spent with PwD
by informal as opposed to paid carers. Consequently,
informal carers may understand that depression is not syn-
onymous to ADL performance. Setting, or proxy type,
only explains QoL in the total sample and in moderate
dementia, when the latter comprises half care home and
69
half community housing participants, which differs from
the casemix of mild and severe dementia.
Limitations
The study is subject to a few limitations. First, it consid-
ered basic daily activities associated with personal care,
such as feeding and continence which denote the more
intrinsic skills required for living independently, but did
not consider IADLs, such as food preparation or laundry
(Lawton & Brody, 1969), as they were assessed in a dif-
ferent format in the larger project. However, IADL perfor-
mance deteriorates in the early stages (Suh et al., 2004)
and given the different degrees of ADL impact on QoL,
the effect of IADLs necessitates further investigation.
Second, carer ratings were obtained from both family
members and care home staff. In spending more time with
the PwD, informal carers may be more aware of the
behaviours and everyday activity performance of the PwD
than carers in care homes, who may spend less time with
an individual resident. This is likely to influence the proxy
QoL report which is reflected in the impact of setting
(community versus care home) on QoL. However, evalu-
ating data from both settings maximises the sample size in
terms of the different dementia stages, particularly the
mild dementia group, so that findings have greater statisti-
cal power and are more representative. Finally, it might
be argued that since the MMSE is principally a screening
tool, any categorisation of dementia severity thus created
is only indicative (Burns, Lawlor, & Craig, 2004). How-
ever, the use of the MMSE to classify levels of cognitive
impairment has been used widely in previous research
(Tombaugh & McIntyre, 1992; Xie, Brayne, & Matthews,
2008).
Conclusions
This is the first study to explore individual ADL perfor-
mance and to investigate the impact of different factors
that contribute to QoL in detail across the stages of
dementia. Explicit knowledge of daily functioning across
mild, moderate and severe dementia can guide daily activ-
ity interventions to address any impairment in the appro-
priate activity as early as possible. Future research is
warranted to translate the presence of these deficits into
specific interventions as highlighted by their impact on
QoL. Improving everyday functional independence is
likely to result in reduced financial expenditures, with
daily activity impairments representing one of the primary
costs in care homes (Handels, Wolfs, Aalten, Verhey, &
Severens, 2013), and is thus also of international impor-
tance (Gustavsson et al., 2010). Taking all these factors
into account, this study adds to the limited evidence base
and provides an avenue into a nascent field of translational
research.
Funding
This work as part of the RightTimePlaceCare project was sup-
ported by a grant from a European Commission within the
70 C.M. Giebel et al.
Seventh Framework Programme [Contract number HEALTH-
F3-2010-242153] funded for 42 months from 1 January 2010 to
30 June 2013.
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