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Original Research Article
Dement Geriatr Cogn Disord
Identifying Cognitive and
Demographic Variables That Contribute
to Carer Burden in Dementia
Laurie A. Miller
a, b Eneida Mioshi
c, d Sharon Savage
b–d Suncica Lah
b, e
John R. Hodges
b–d Olivier Piguet
b–d
a Neuropsychology Unit, Royal Prince Alfred Hospital and Sydney Medical School,
b ARC Centre of Excellence in Cognition and Its Disorders,
c Neuroscience Research Australia,
d School of Medical Sciences, University of New South Wales, and
e School of Psychology,
University of Sydney, Sydney, N.S.W. , Australia
Key Words
Carer burden · Alzheimer’s dementia · Frontotemporal lobar degeneration · Cognitive
deficits · Demographic variables
Abstract
Background/Aims: Carer burden has been associated with other carer-reported factors (e.g.
depression), but less is known about the influence of more independent variables. We aimed
to determine the impact of cognitive deficits, demographic variables and dementia subtype
on carer burden. Methods : Patients with Alzheimer’s dementia (n = 35) or frontotemporal lo-
bar degeneration (n = 61) underwent assessment of anterograde memory, word generation,
impulse control and emotion recognition. Age, sex, relationship type, disease duration and
diagnosis were also considered. Carers completed the Zarit Burden Interview. Results: In bi-
variate regression analyses, carer burden was related to age, diagnosis, memory, impulse con-
trol and emotion recognition. Stepwise multivariate regression revealed independent contri-
butions by patient age, memory and emotion recognition, explaining 23% of the variance.
Conclusion: The findings could help refine interventions and carer support.
Copyright © 2013 S. Karger AG, Basel
Introduction
Patients with dementia typically exhibit changes in cognition, memory, emotional
processing, behaviour and personality, which compromise their adaptive functioning and
independence. For carers, dementia often leads to a diminished bond with the patient,
Accepted: Januar y 3, 2013
Published online: ■ ■ ■
Dr. Laurie Miller
Neuropsychology Unit, Royal Prince Alfred Hospital
Camper down, NSW 2050 (Australia)
E-Mail laurie.miller
@ sydney.edu.au
www.karger.com/dem
DOI: 10.1159/000347146
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Dement Geriatr Cogn Disord
DOI: 10.1159/000347146
Miller et al.: Identifying Cognitive and Demographic Variables That Contribute to Carer
Burden in Dementia
www.karger.com/dem
© 2013 S. Karger AG, Basel
depression and social isolation [1, 2] . The importance of establishing the variables that
contribute most to carer stress and burden cannot be understated, as this will enable clini-
cians and policy makers to identify those carers who are most at risk and design targeted
interventions to alleviate burden when possible.
Previous research indicates that among carers of dementia patients, those who report
higher levels of depression
[3] , neuroticism [4] or less caring relationships with the patient
[1] experience increased carer burden. Specific mood/behavioural changes such as apathy
and depression in patients with Alzheimer’s disease (AD)
[5] and disinhibition in patients
with frontotemporal dementia (FTD)
[6, 7] have also been linked with high carer burden.
Some carer-related demographic variables influence the level of burden reported: women
tend to report higher levels than men
[2, 8, 9] and those with fewer social contacts have higher
perceived burden/stress
[3, 10] . In contrast, the type of relationship between patient and
carer (e.g. spouse vs. offspring)
[11, 12] and dwelling status (i.e. at home or in an institution)
[3, 13] , appears not to be related to carer burden.
To date, however, few studies have investigated which patient-centred variables (i.e.
those independent from the carer’s report) influence burden of care. When this has been
done, dementia subtype appears to be an important variable modulating burden: carers of
patients with behavioural variant FTD (bvFTD) experience more stress and carer burden
than carers of patients with other forms of dementia
[1, 3, 6, 14, 15] . This increased stress
may be related to the marked deficits in impulse control found more commonly in bvFTD than
in AD patients
[16–19] . In contrast, patient scores on global cognitive screening tools [10] or
measures of activities of daily living
[3] seem to be largely unrelated to carer burden. To our
knowledge, no previous study has directly examined the potential influence of the patient’s
specific cognitive impairments on burden. Thus, in addition to a global cognitive screening
score, we chose to investigate anterograde memory, word generation skills, impulse control
and emotion recognition, because these domains are known to be affected by AD and FTD
[16,
20–22] .
The aim of this study was to establish which of the following variables contribute to carer
burden in the early stages of dementia: (i) dementia diagnosis, (ii) patient demographics (sex,
age, disease duration), (iii) carer demographics (age, sex, relationship to patient) and (iv)
patient’s cognitive deficits.
Methods
Participant s
Participants were recruited from FRONTIER, the FTD clinical research group in Sydney, Australia. The
study sample included 35 patients with suspected underlying Alzheimer pathology (AD = 23; logopenic
progressive aphasia = 12) and 61 patients with frontotemporal lobar degeneration (FTLD) (bvFTD = 26,
semantic dementia = 16, progressive nonfluent aphasia = 8, corticobasal syndrome = 11). All participants
were examined by the same senior neurologist (J.R.H.) and clinical diagnosis was established based on
clinical interview, comprehensive neuropsychological assessment and presence of brain atrophy on struc-
tural MR according to established clinical diagnostic criteria
[23, 24] . The bvFTD patients considered nonpro-
gressive, or ‘phenocopy’ cases
[16] were excluded. All participants were living at home and carer information
was obtained within 6 months of the clinical and cognitive investigations. The majority of carers were spouses
of the patients (82%). Disease duration was determined on the basis of the carer’s report of initial symptoms
as recorded in the clinical interview at baseline.
M e a s u r e s
Carer Burden
All carers completed the abridged Zarit Burden Interview
[25, 26] , a 12-item questionnaire investi-
gating different aspects of carer burden, such as whether the carers feel that their own health has suffered
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Dement Geriatr Cogn Disord
DOI: 10.1159/000347146
Miller et al.: Identifying Cognitive and Demographic Variables That Contribute to Carer
Burden in Dementia
www.karger.com/dem
© 2013 S. Karger AG, Basel
or whether they feel stressed or strained. Scores range from 0 to 48, with higher scores reflecting more
perceived burden. A cut-off score of 17 is generally taken as an indication of a significantly high burden.
C o g n i t i o n
On all of the following measures, higher scores indicated better performance.
General Cognition. Global cognitive performance was estimated using the Addenbrooke’s Cognitive
Examination – revised (ACE-R)
[27] , a dementia screening tool.
Memory. Integrity of anterograde memory was established using the Doors A subtest from the Doors
and People memory test
[28] . Memory for 12 photographs of doors is tested immediately after presentation
using a 4-choice recognition format. The number correct was converted to an age-scaled score.
Word Generation and Impulse Control. Measures of word generation and impulse control were taken
from the Hayling test
[29] . In this test, participants are first asked to finish 15 incomplete sentences by saying
a single word that fits (as quickly as possible). Mean time to complete these sentences is converted to an age-
adjusted score reflecting word generation ability (Hayling score A). In the second part of the test, participants
are again asked to complete 15 new, incomplete sentences, but this time with a word that is unrelated to the
sentence. They have to suppress the obvious response. The number of related (incorrect) words generated
under these conditions is converted to an age-adjusted score and reflects impulse control integrity (Hayling
score C). Given the nature of the tasks, some patients with severe language problems were unable to complete
the Hayling test.
Emotion Recognition. Facial emotion recognition was measured using the Facial Affect Selection test
(FAST)
[30] . In this test, participants view 42 arrays of faces showing seven alternative emotional expres-
sions and they are asked to choose the face that corresponds with a spoken emotion label (e.g. surprised,
sad).
D a t a A n a l y s e s
All analyses were performed using SPSS19 (IBM, Chicago, Ill, USA). The AD and FTLD groups were first
compared using χ
2 tests of independence for categorical variables, and independent t tests or Mann-Whitney
tests for continuous variables depending on score distribution. Next, linear regression analyses were carried
out to identify the best predictor variables of carer burden among the diagnostic, demographic and cognitive
variables. In the first instance, univariate regression analyses were conducted to identify the contribution of
each predictor variable to burden of care, independently from all the other predictors. Secondly, predictors
that reached statistical significance in the univariate analyses were entered into a multiple linear regression
model using a stepwise method in order to examine their concurrent effect in predicting carer burden. This
model was refined by discarding any variable found to become non-significant using an increment test, until
all variables were found to contribute significantly to the model.
Results
Demographic characteristics for the patients and carers in the two diagnostic groups are
shown in table 1 . The groups were well matched for age, sex distribution and disease duration.
On the cognitive measures, groups differed only on the Hayling C score, with the FTLD group
making more impulse control errors. Burden of care as measured by the Zarit Burden
Interview was also significantly higher in FTLD compared to AD carers.
Within the set of demographic and cognitive variables investigated, sex, relationship
(spouse vs other), disease duration, word generation ability and ACE-R score did not reach
significance as predictors of carer burden. However, six variables were found to make contri-
butions to the Zarit Burden Interview score ( table 2 ); three were demographic (patient age,
carer age, diagnosis) and three were cognitive (emotion recognition, memory, impulse
control). More specifically, younger age, a diagnosis of FTLD and lower scores on the cognitive
tasks were predictive of higher carer burden.
Multiple regression analyses combining these six variables yielded a significant model
(F(3, 92) = 8.94, p <.0001) containing three predictor variables, which explained 23% of the
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Dement Geriatr Cogn Disord
DOI: 10.1159/000347146
Miller et al.: Identifying Cognitive and Demographic Variables That Contribute to Carer
Burden in Dementia
www.karger.com/dem
© 2013 S. Karger AG, Basel
score variance on the Zarit Burden Interview ( table 2 ). All these variables (patient age,
emotion recognition and memory) independently contributed significantly to the final model.
None of the remaining variables identified in the bivariate analyses were found to contribute
significantly to the model. Again the regression analyses showed that younger patient age and
lower scores on the emotion and memory tests were associated with higher burden of care
( table 2 ).
Table 1. Clinical characteristics for the AD and FTLD patients and their carers (mean ± SD)
AD
(n = 35)
FTLD
(n = 61)
p value
Patient
Male, % 63 71 NS
Age 66.1 ± 8.5 63.1 ± 8.8 NS
Disease duration, years 3.6 ± 2.9 4.1 ± 2.4 NS
ACE-R (max 100) 67.6 ± 17.6 68.2 ± 16.4 NS
Doors A (max 12) 7.3 ± 3.3 6.8 ± 2.6 NS
FAST (max 42) 30.8 ± 5.9 29.0 ± 7.2 NS
Hayling A (max 7)a3.5 ± 1.7 3.2 ± 1.9 NS
Hayling C (max 8)b4.6 ± 2.4 3.3 ± 2.4 0.001
Carer
Male, % 26 26 NS
Spouse, % 83 82 NS
Age 61.9 ± 10.7 59.4 ± 11.4 NS
ZBI (max 48) 14.7±9.4 19.6 ± 10.4 0.024
FAST = Facial Affect Selection test; ZBI = Zarit Burden Interview.
a Data available for 23 AD and 38 FTLD patients.
b Data available for 21 AD and 35 FTLD patients.
Table 2. Univariate and multivariate regression analyses on demographic and cognitive variables for
prediction of the Zarit Burden Interview score
Variable B SE B β p
Univariate analyses
Patient age –0.368 0.114 –0.315 0.002
Diagnosis 5.155 2.128 0.242 0.017
Carer age –0.234 0.097 –0.244 0.017
FAST –0.416 0.15 –0.275 0.007
Doors and People A –1.072 0.352 –0.300 0.003
Hayling C –1.179 0.527 –0.291 0.030
Final multivariate model
Patient age –0.368 0.109 –0.315 0.001
FAST –0.372 0.146 –0.246 0.012
Doors and People A –0.701 0.346 –0.196 0.046
FAST = Facial Affect Selection test.
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Dement Geriatr Cogn Disord
DOI: 10.1159/000347146
Miller et al.: Identifying Cognitive and Demographic Variables That Contribute to Carer
Burden in Dementia
www.karger.com/dem
© 2013 S. Karger AG, Basel
Discussion
Several new variables that contribute to carer burden in the early stages of dementia
were identified. Our aim was to consider variables that were independent of carer report (e.g.
of the patient’s behaviours or of their own mood). We found that patient age, anterograde
memory performance and emotion recognition ability all made independent contributions to
the prediction of carer burden. Diagnosis (FTLD), carer age (younger) and impulse control
(lower score) were also predictive of carer burden, but only in the univariate analyses; that
is, when considered in isolation and independently from the other predictor variables of
interest. Once examined concurrently with other predictors, contributions of these variables
to the final model were no longer significant. These findings are consistent with recent work,
which has demonstrated considerable overlap in performance on anterograde memory
[21]
and emotion processing tasks
[30] between AD and FTLD patient groups.
Like previous studies
[10, 11] , we found that patient performance on a general measure
of cognition (ACE-R) was not related to carer burden. However, deterioration in particular
cognitive domains (i.e. anterograde memory and emotion processing skills) was associated
with increased carer burden. These specific impacts might be overlooked when multiple
aspects of cognition are combined in more general cognitive screens.
Reduced impulse control, as measured by the Hayling test, failed to contribute to the final
multivariate model. Of note, in our study the Hayling test was not administered to patients
with significant language disturbance. It is therefore possible that the contribution of this task
to the final model might have been detected with a larger sample. Importantly, however,
while increased burden has been reported in carers of patients with behavioural disinhibition
[6, 7, 31] , other studies have shown that a carer’s reaction to problem behaviours and coping
style are more important predictors of carer burden than the actual frequency of impulsive
or disinhibited behaviours
[8, 13, 32] .
Level of carer burden was not influenced by type of relationship between the patient and
the carer, a finding consistent with previous studies
[11, 12] . Similar to most other reports, it
is worth noting that the vast majority of carers were spouses.
In this study, almost a quarter of the variance in carer burden score was explained by a
model involving cognitive and demographic variables. It is noteworthy that in a study by
Mioshi et al.
[3] , a similar approach incorporating the carer’s self-report of depression and
their number of social contacts predicted 54% of the variance in carer burden. Others have
found that burden is associated with carer’s report of behavioural symptoms and reduced
activities of daily living skills
[6, 7, 10, 12, 31] . Together, these studies indicate that carer
depression, paucity of social contacts, younger patient age and specific changes in the patient’s
behaviour and cognitive abilities (especially memory decline and loss of ability to recognise
emotional expressions) contribute to carer burden. It is likely that some of these factors are
related. For example, a lack of social contact may be particularly difficult for younger carers,
who may have reduced their employment and recreational activities to care for a person with
dementia. This requires further exploration so that such important information could help to
direct interventions.
The provision of structured group-based education programs to the carers of dementia
patients is modestly successful in reducing stress and burden
[33–35] . In contrast, behav-
ioural management strategies for the patients themselves have thus far proven less effective
(especially in FTLD)
[36] . Our results indicate that interventions to address problems in
anterograde memory and emotion recognition have the potential to be particularly helpful in
reducing carer burden. To help carers cope with patient deficits in anterograde memory, we
suggest emphasizing the use of external memory aids and routine schedules. To cope with
failures in emotion recognition, which potentially lead to confusion and inappropriate or
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Dement Geriatr Cogn Disord
DOI: 10.1159/000347146
Miller et al.: Identifying Cognitive and Demographic Variables That Contribute to Carer
Burden in Dementia
www.karger.com/dem
© 2013 S. Karger AG, Basel
apparently apathetic responses in patients, it may be helpful for carers to view emotion
recognition impairments as a consequence of dementia and be taught strategies (e.g. verbal-
ization of feelings). Given the fact that carer burden was highest for younger patients, the
provision of appropriate day care facilities for this population is particularly important for
allowing spouses to continue to work, maintain social networks and reduce carer burden.
Acknowledgements
This project was supported by a National Health and Medical Research Council (NHMRC) of Australia
Project Grant (510106). E.M. is supported by an Early Career NHMRC Fellowship (1016399). J.R.H. is
supported by an ARC Federation Fellowship (FF0776229). O.P. is supported by an NHMRC Clinical Career
Development Fellowship (APP1022884). We thank Dr. Ilana Hepner for helping to organise the database and
perform analyses.
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