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Aging & Mental Health

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Caregiver burden in mild cognitive impairment

a a a a a
Matt Paradise , Donna McCade , Ian B. Hickie , Keri Diamond , Simon J.G. Lewis &
a
Sharon L. Naismith
a
Brain & Mind Research Institute, University of Sydney, Camperdown, Australia
Published online: 28 May 2014.

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To cite this article: Matt Paradise, Donna McCade, Ian B. Hickie, Keri Diamond, Simon J.G. Lewis & Sharon
L. Naismith (2015) Caregiver burden in mild cognitive impairment, Aging & Mental Health, 19:1, 72-78, DOI:
10.1080/13607863.2014.915922

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 Aging & Mental Health, 2015
Vol. 19, No. 1, 72
78, http://dx.doi.org/10.1080/13607863.2014.915922

Caregiver burden in mild cognitive impairment

Matt Paradise*, Donna McCade, Ian B. Hickie, Keri Diamond, Simon J.G. Lewis and Sharon L. Naismith
Brain & Mind Research Institute, University of Sydney, Camperdown, Australia
(Received 26 November 2013; accepted 13 April 2014)

Objectives: We aimed to compare the rates of burden amongst caregivers of participants with mild cognitive impairment
(MCI), compared to a control group. We also aimed to identify factors in both the caregiver and patient that are associated
with significant levels of burden.
Method: This was a cross-sectional study. Sixty-four participants with MCI, 36 control-participants and their respective
caregivers/informants were recruited to a university research clinic. The proportion of those who showed clinically
significant levels of burden was determined by a Zarit Burden Interview score of >21. The associations of burden in MCI-
caregivers were calculated in the following categories; participant characteristics (including depressive symptoms,
cognition and informant ratings of cognitive and behavioural change); caregiver characteristics; and the caregiving
context. Multivariate analyses were performed to examine the relative contribution of individual variables to burden
Downloaded by [New York University] at 02:50 22 June 2015

amongst MCI-caregivers.
Results: We found that 36% of MCI-caregivers reported clinically significant levels of burden, twice that of the control
informant group. Participant behavioural problems contribute most to burden, with participant depression and possibly
cognition also having a significant association.
Conclusion: Caregiver burden is a considerable problem in MCI and shares some of the same characteristics as caregiver
burden in dementia, namely a strong association with challenging behaviours in the patient. This has implications for
further research and intervention studies.
Keywords: mild cognitive impairment; caregivers; depression; burden

Introduction
Extensive research has been undertaken regarding care-
giver burden in dementia (Richardson, Lee, Berg-Weger,
& Grossberg, 2013). Caregiver burden is not only associ-
ated with an adverse emotional state and psychiatric mor-
bidity in the caregiver but has additional physical
sequelae, financial and social consequences. Compared to
non-caregivers, for example, caregivers are more likely to
report worse health, utilize medical care more frequently
and take psychotropic medication (Burns & Rabins, 2000;
Etters, Goodall, & Harrison, 2008; Schulz & Martire,
2004). Caregiver burden also has deleterious consequen-
ces for the patient and is strongly associated with the need
for institutionalization (Luppa, Luck, Brahler, Konig, &
Riedel-Heller, 2008). Caregiver burden is common, with
studies reporting that around 22% of caregivers experi-
ence clinical depression (Cuijpers, 2005), and some stud-
ies suggesting that up to 75% of caregivers experience
significant depressive (Teri, 1994) and anxiety (Cooper,
Balamurali, & Livingston, 2007) symptoms.
Caregiver burden in dementia is associated with factors
in three domains; patient characteristics, caregiver charac-
teristics and the caregiving context (Burns & Rabins, 2000;
Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000).
With regard to patient characteristics, the frequency of
behavioural problems in dementia has been identified as
the strongest predictor of caregiver burden, more than the
functional or cognitive impairments of the patient.
Amongst caregiver characteristics, female caregivers and
those with worse health are more likely to experience bur-
den. Finally, research suggests that the caregiving experi-
ence is most difficult for spousal caregivers and that
increased social support is important in mitigating care-
giver burden (Joling et al., 2010).
Comparatively however, the issue of caregiver burden
in milder forms of cognitive impairment has been under-
researched. Mild cognitive impairment (MCI) is a pro-
posed interim stage between normal ageing and dementia,
characterized by the presence of cognitive impairment in
the context of essentially intact activities of daily living
(Petersen et al., 1999). Since these original criteria were
published however, studies have reported subtle impair-
ments in functioning for up to two years before a diagno-
sis of dementia is made, as well as the presence of
behavioural symptoms including irritability or depression
(Gauthier et al., 2006). The prevalence of MCI is reported
to be approximately 3%
19% based on population-based
epidemiological studies with approximately 10% of MCI
cases converting to dementia each year (Gauthier et al.,
2006). With an ageing population in the developed world,
it is projected that the prevalence of MCI will rise.
Seeher, Low, Reppermund, and Brodaty (2013)
recently reviewed the published literature and reported
data from 10 articles, representing nine distinct caregiving
MCI cohorts. The studies were heterogeneous in nature
and utilized several primary outcome measures, including
depression, burden, stress and anxiety. There were several
limitations to these papers, including lack of

*Corresponding author. Email: matthew.paradise@sydney.edu.au

Ó 2014 Taylor & Francis

 Aging & Mental Health
representativeness by reliance on only spousal caregivers,
the lack of appropriate variables being entered into multi-
variate analyses and the lack of a control group in all but
two studies (Muangpaisan, Intalapaporn, & Assantachai,
2008; Ready, Ott, & Grace, 2004).
This paper therefore intends to expand the limited
research in this field. The primary aim is to report the
prevalence of significant levels of burden amongst care-
givers of people with MCI, compared to informants of
control-participants. Second, to identify which factors are
associated with significant levels of burden based on find-
ings from dementia research in three categories; patient
characteristics, caregiver characteristics and the caregiv-
ing context.
Methods
Sixty-four participants with MCI and their caregivers
were recruited from the Healthy Brain Ageing Clinic at
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the Brain and Mind Research Institute, University of Syd-
ney. All participants were help-seeking to a specialist
research clinic targeting healthy brain ageing and were
reporting mood and/or cognitive symptoms. Participants
were required to be aged 50 or above and to have adequate
English proficiency for neuropsychological assessment.
Exclusion criteria included: history of stroke, head injury
with loss of consciousness for more than 30 minutes, neu-
rological disorder, medical condition known to affect cog-
nition (e.g., cancer), psychiatric disorder other than an
affective disorder, mini-mental state examination
(MMSE) score below 24 and/or diagnosis of dementia.
Since the presence of a current full-threshold mood disor-
der is associated with cognitive decline (Naismith et al.,
2003), individuals fulfilling the Diagnostic and Statistical
Manual of Mental Disorders, fourth edition (DSM-IV)
(American Psychiatric Association, 1994) criteria for
major depressive disorder were also excluded. The choice
of caregiver was determined by the participant, with the
recommendation that the caregiver knew the participant
well and was able and willing to fill in a questionnaire
about the participant. These included spouses, family
members and friends.
Thirty-six control-participants and their significant
others, to be called ‘informants’, were also recruited.
These participants were cognitively intact individuals
responding to adverts looking for controls as well as help-
seeking individuals who were found on extensive testing
not to fulfil diagnosis for MCI. Informants were chosen
by control-participants in the same manner as caregivers
were chosen by MCI-participants as above. Control-par-
ticipants had the same assessment and battery of tests as
MCI-participants and were also excluded if they had cur-
rent DSM-IV diagnosed depression or any of the other
exclusion criteria listed above.
This study was approved by the University of Sydney
Human Research Ethics Committee, and written informed
consent was obtained from all participants and their care-
givers/informants.
MCI ratings were conducted by consensus of an old
age psychiatrist and two clinical neuropsychologists. In
73
accordance with the Petersen et al. (1999) criteria, indi-
viduals were classified as having MCI if upon neuropsy-
chological testing, they scored at least 1.5 standard
deviations (SD) below their predicted level of intellectual
functioning in at least one cognitive domain, while daily
functioning remained largely intact. Daily functioning
was assessed by a psychiatrist and neuropsychologist,
with reference to additional caregiver-based interviews
where warranted. All participants were rated on the
Global Assessment of Functioning Scale (American Psy-
chiatric Association, 1994) and obtained scores greater
than 60, suggesting no greater than mild functional
decline.
MCI-participants were further classified as either
amnestic or non-amnestic depending on whether their
impairments affected the memory domain (Petersen &
Morris, 2005). Note that the amnestic subtype was
required to exhibit a memory deficit of the ‘hippocampal-
type’ (i.e., memory storage impairment), as demonstrated
by evidence of dysfunction on tests of delayed memory
recall (i.e., not merely encoding deficits).
Participant measures
Demographic information including age, gender, and edu-
cation was obtained. Severity of depressive symptoms
was rated on the 17-item Hamilton Depression Rating
Scale (HAM-D (Hamilton, 1960)). Physical health was
recorded using the total score severity index of the Cumu-
lative Illness Rating Scale, Geriatric Version (CIRS-G
(Miller, 1991)).
As described previously (Mowszowski et al., 2012), a
neuropsychologist administered a battery of standardized
tests to participants to assess cognition. For descriptive
purposes, premorbid intelligence was estimated using the
Wechsler Test of Adult Reading (Wechsler, 2001) and
global cognitive functioning was measured using the
MMSE (Folstein, Folstein, & McHugh, 1975).
A measure of participant behaviour and function were
obtained using the Cambridge Behavioural Inventory
Revised (CBI-R (Wear, 2008)). The CBI-R is a 45-item
questionnaire that was completed by the caregiver/infor-
mant and assesses changes in functional and behavioural
domains including memory and orientation (eight items),
everyday skills (five items), self-care (four items), abnor-
mal behaviour (six items), mood (four items), beliefs
(three items), eating habits (four items), sleep (two items),
stereotypic and motor behaviours (four items) and motiva-
tion (five items). A total score was obtained by summing
all domain scores. The frequency of symptoms present
over the past month is rated on a scale from 0 to 4. Score
0 indicates no impairment; 1, a few times per month; 2, a
few times per week; 3, a daily occurrence; and 4, constant
occurrence.
Caregiver/informant measures
For the purposes of clarity and consistency, family mem-
bers and friends who supported someone living with MCI
were referred to as ‘caregivers’, although they may not
 74 M. Paradise et al.
have regarded themselves as such, or indeed fulfilled a
caregiving role. This is consistent with the literature in
MCI (Seeher et al., 2013) and dementia (Dean & Wilcock,
2012). The significant others of control-participants were
referred to as ‘informants’.
Caregivers and informants completed a questionnaire
which included demographic information of age, gender,
and education. If necessary, this was augmented by a
phone call to obtain missing demographic details about
the informant. Information about the nature of the rela-
tionship between the participant and caregiver/informant
(i.e., spouse, relative, friend, or other) was obtained as
well as information on whether the dyad lived together.
The Hospital Anxiety and Depression Scale (HADS
(Zigmond & Snaith, 1983)) was used to assess the care-
giver/informant’s depressive and anxiety symptom sever-
ity. This 14-item Likert scale has seven items measuring
anxiety and seven measuring depression. Each item is
rated from 0 to 3, generating a total score between 0 and
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21 for both anxiety and depression. Based on existing lit-
erature, a cut-off of 8 was used to identify borderline or
significant cases of anxiety and/or depression (Bjelland,
Dahl, Haug, & Neckelmann, 2002).
The Zarit Burden Interview (ZBI (Zarit, Reever, &
Bach-Peterson, 1980)) was the primary outcome measure
of burden. This self-report questionnaire contains 22 ques-
tions with a Likert multiple choice response of the fre-
quency of feelings, ranging from ‘Never’ (0), to ‘Nearly
Always’ (4). A total score between 0 and 88 is generated.
A score of 21 or greater was chosen to be clinically signif-
icant based on guidelines (Zarit & Zarit, 1987) and other
papers in MCI (Bruce, McQuiggan, Williams, Westervelt,
& Tremont, 2008).
Statistical analyses
All statistical analyses utilized the Statistical Package for
the Social Sciences (IBM SPSS 20.0.0 for Windows, Chi-
cago, IL, USA). Baseline characteristics for MCI-partici-
pants, control-participants, and their respective caregiver/
informants were obtained. Independent sample t-tests and
chi-square tests were then performed to check for differ-
ences in characteristics between the MCI-participants and
control-participants as well as between the two groups of
caregiver/informants. Independent sample t-tests were
used to compare the mean ZBI score for MCI-caregivers
and control-informants. The proportion of individuals
with clinically significant burden in each group was also
reported, with chi-square testing the between-group
differences.
For the caregivers of MCI-participants, test of univari-
ate association between mean ZBI score and participant
characteristics, caregiver characteristics and caregiving
context were then performed. For the dichotomous varia-
bles of participant gender, amnestic vs. non-amnestic MCI,
caregiver/informant gender and whether the dyad co-hab-
ited, independent sample t-tests were used. For the categor-
ical variables of participant educational level, caregiver/
informant educational level, and the relationship to the par-
ticipant, analysis of variance (ANOVA) tests were used.
For continuous data, the participant’s age, clinician-rated
participant depression (HAM-D), CBI data, and the
informant’s age, both Pearson and Spearman correlation
coefficients were used depending on the distribution of
data. Assumptions of normality were based on visual
inspection using histograms as well as Kolmogorov
Smir-
nov tests, with a p < 0.05 significance level chosen.
Multivariate analyses were then performed to examine
the relative contribution of individual variables to burden
amongst MCI-informants. Significant variables at the
p < 0.05 were entered simultaneously into a linear regres-
sion model.
A sensitivity analysis was conducted with caregivers
dichotomized into those who suffered significant infor-
mant stress (ZBI > 21) versus those who did not. The
analyses described above were then repeated using care-
giver/informant stress as a dichotomous rather than con-
tinuous outcome measure.
Finally, HADS depressive and anxiety symptoms in
the caregivers/informants were reported as both a mean
score as well as a proportion of those who achieved bor-
derline or significant caseness. The mean anxiety and
depression scale scores were then correlated with burden.
Results
There was only minimal missing data. Two MCI-partici-
pants and one control-participant did not have an MMSE
recorded. Age and education data was not provided by 13
MCI-informants and eight control-informants. One con-
trol-informant did not provide gender data and another
control-informant did not provide CBI sleep and stereo-
typic subscales and thus CBI-Total.
Characteristics of both the 64 MCI-participants and 36
control-participants and their respective caregiver/inform-
ants are reported in Table 1. There was a higher propor-
tion of women in the control-participant group compared
to the MCI-participant group (x2 ¼ 5.27, df ¼ 1, p ¼
0.03) and as we would expect, a significantly reduced
MMSE in the MCI-participant group compared to the con-
trol-participant group (t(88) ¼ 3.76; p < 0.001). There
was no significant difference in the physical health (total
CIRS-G score) between the MCI-participants and control-
participants (t(97) ¼
1.86; p ¼ 0.07). No other demo-
graphic information was significantly different between
the two sets of groups.
The primary outcome measure was mean ZBI score.
The mean ZBI score for MCI-caregivers was 17.3 (SD
11.2; range 0
49) compared to the control-informants
mean score of 11.6 (SD 1.1; range 0
45). This was a sig-
nificant difference (t(98) ¼
2.43, p ¼ 0.02). Twenty-
three of 64 MCI-caregivers (35.9%) reported clinically
significant burden (ZBI > 21) compared with only 6 out
of 36 control-informants (16.7%). This is a statistically
significant difference (x2 ¼ 4.16, df ¼ 1, p ¼ 0.04).
The univariate associations of participant and care-
giver characteristics with burden in the 64 MCI-caregivers
are reported in Table 2. The participants’ depression score
(HAM-D) and their behavioural disturbance (CBI), either
as a total score or 8 out of 10 subscales were associated
 Aging & Mental Health 75

Table 1. Characteristics of MCI and control-participants, and their caregivers/informants.

Characteristic MCI-participant Control-participant MCI-caregiver Control-informant

N 64 36 64 36
Age in years, mean  64.9  9.7 64.6  9.7 55.6  14.1 56.2  14.3
SD
Female gender 35 (54.7%) 28 (77.8%) 39 (61.9%) 20 (55.6%)
Education
Did not complete high school 17 (26.6%) 13 (36.1%) 11 (21.6%) 3 (10.7%)

Completed high school 17 (26.6%) 10 (27.8%) 7 (13.7%) 5 (17.9%)

Completed higher study 30 (46.9%) 13 (36.1%) 33 (64.7%) 20 (71.4%)
MMSE, mean  SD 27.9  2.6 29.3  1.0


Relationship to
Partner/spouse

35 (54.7%) 22 (61.1%)
participant

Relative

6 (9.4%) 2 (5.6%)

Friend

20 (31.3%) 12 (33.3%)

Other

3 (4.7%) 0
Living with participant

45 (70.3%) 23 (63.9%)
(yes)

Notes: SD ¼ Standard deviation, MMSE ¼ Mini-mental state examination.

Downloaded by [New York University] at 02:50 22 June 2015

with greater burden in the informants of those looking
after someone with MCI. Global cognition of the partici-
pant, as measured by the MMSE, just failed to achieve a
significant association with burden (p ¼ 0.05). None of
the other variables examined were associated with care-
giver burden.
These univariate results were then entered into a mul-
tivariate regression model (Table 3). The model included
the depression score, total functional/behavioural distur-
bance and the MMSE as it trended towards significance
with p ¼ 0.05. We found that total functional/behavioural
disturbance score, measured by the CBI-R was the only
factor independently associated with informant burden in
MCI-informants.
A further analysis was then performed with care-
givers dichotomized into those who suffered significant
informant stress (ZBI > 21) versus those who did not.
Accordingly, the univariate results were very similar for
these analyses, with depression and total functional/
behavioural disturbance, as reported in the CBI-R, being
associated with the presence of informant burden. This
was also the case for the MMSE. When the individual
CBI-R subscales were examined, 7 of the 10 items were
significant, with only memory problems, self-care, and
abnormal beliefs not being associated with the presence
of informant stress.
Finally, depression and anxiety scores on the HADS
were compared between the MCI-caregivers and control-
informant groups. There was no significant difference in
the level of depressive symptoms reported by MCI-care-
givers (M ¼ 4.27  4.34, n ¼ 55) and control-informants
(M ¼ 3.48  3.25, n ¼ 33; t(86) ¼
0.90, p ¼ 0.37). In
contrast MCI-caregivers reported significantly greater
anxiety (M ¼ 6.61  4.00, n ¼ 55) than control-inform-
ants (M ¼ 4.91  3.18, n ¼ 33; t(86) ¼
2.09, p ¼ 0.04).
Using a cut-off of eight to indicate caseness, 22/55 (40%)
of MCI-caregivers experienced significant levels of anxi-
ety and 10/55 (18%) of MCI-caregivers reported signifi-
cant depression symptoms.
In MCI-caregivers, burden was significantly corre-
lated with both the HADS
anxiety scores (r ¼ 0.34; p ¼
0.01) and HADS
depression scores (r ¼ 0.37; p ¼ 0.01).
Discussion
This study shows that burden is common in the caregivers
of MCI-participants, with 36% reporting clinically signifi-
cant levels of burden. This result was approximately dou-
ble of that reported by the control group’s informants.
When factors responsible for this burden were explored,
depression reported by the MCI-participant, functional/
behavioural problems and possibly cognition were signifi-
cant. On multivariate analysis, it was found that partici-
pant functional/behavioural problems as a whole
contributed most to caregiver burden. We did not find that
any of the caregiver characteristics measured (age, gen-
der, education, and relationship to participant) or the care-
giving context (whether the caregiver lived with the
participant or not) were associated with the reported level
of burden.
Certain participant behaviours, namely problems with
self-care and abnormal beliefs were not associated with
informant stress. This is most likely because these behav-
iours were extremely rare in MCI, with the vast majority
of caregivers in our study indicating that these problems
had never occurred. The association of participant cogni-
tion and caregiver burden is less clear. Caregivers’ rating
of the participant’s memory and orientation, as measured
by the CBI-R, was associated with burden on univariate
analysis, whereas clinician-scored cognition (i.e., MMSE)
was not associated with burden. This may be due to the
ceiling effect of the MMSE and its insensitivity for detect-
ing the subtle cognitive changes of MCI (Nasreddine
et al., 2005), compared to the sensitivity of the caregiver
noticing even subtle cognitive changes (Tsang, Diamond,
Mowszowski, Lewis, & Naismith, 2012).
Our findings are consistent with the published litera-
ture. Garand, Dew, Eazor, DeKosky, and Reynolds (2005)
 76 M. Paradise et al.

Table 2. Univariate associations of participant, caregiver, and caregiving context characteristics with MCI-caregiver burden (mean ZBI
score), n ¼ 64.

Characteristic Mean ZBI  SD Statistical test

Participant Age
r ¼
0.08

characteristics
Gender
Male 17.9  11.2 t(62) ¼ 0.39

Female 16.8  11.3
MMSE rs ¼
0.25
Education
Did not complete high school 17.2  12.0 F(2,61) ¼ 0.65

Completed high school 19.8  11.2


Completed higher study 15.9  10.8

Depression (HAM-D)
r ¼ 0.30
MCI subtype
Amnestic 17.3  10.7 t(62) ¼ 0.01

Non-amnestic 17.3  11.6
Functional/behavioral
CBI-R (total)
rs ¼ 0.52
problems

Memory and orientation
rs ¼ 0.26

Everyday skills
rs ¼ 0.40

Self care
rs ¼ 0.18
Downloaded by [New York University] at 02:50 22 June 2015

Abnormal behavior
rs ¼ 0.55

Mood
rs ¼ 0.53

Beliefs
rs ¼ 0.22

Eating habits
rs ¼ 0.44

Sleep
rs ¼ 0.33

Stereotypic and motor behaviors
rs ¼ 0.60

Motivation
rs ¼ 0.44
Caregiver Age in years
r ¼ -0.05
characteristics
Gender
Male 15.0  8.8 t(61) ¼
1.33

Female 18.9  12.4 N/A
Education
Did not complete high school 16.6 F(2,48) ¼ 0.93

Completed high school 22.0


Completed higher study 16.0

Relationship to
Spouse 16.2 F(3,60) ¼ 1.25
participant

Relative 19.2


Friend 20.0


Other 8.0

Caregiving context Living with participant
Yes 17.1  10.6 t(62) ¼ 0.22

No 17.7  12.6

Notes:  p < 0.05,  p < 0.01,  p < 0.001

SD ¼ Standard deviation, r ¼ Pearson’s correlation coefficient, t ¼ independent sample t test statistic, rs ¼ Spearman’s correlation coefficient, F ¼ F sta-
tistic ANOVA analysis.
MMSE ¼ Mini-mental state examination, ZBI ¼ Zarit Burden Interview, HAM-D ¼ Hamilton Rating Scale for Depression and CBI-R ¼ Cambridge
Behavioural Inventory Revised.

Table 3. Multivariate linear regression analysis; associations with burden in MCI-caregivers, n ¼ 61.

Unstandardized coefficients Standardized coefficients

Predictor variable B Std. error Beta

MMSE score
0.15 0.55
0.04

Depression (HAM-D) 0.65 0.33 0.23
Functional/behavioural problems (CBI-R total) 0.29 0.06 0.55

Notes:  p < 0.05,  p < 0.01,  p < 0.001.

MMSE ¼ Mini-mental state examination, HAM-D ¼ Hamilton Rating Scale for Depression and CBI-R ¼ Cambridge Behavioural Inventory Revised.
 Aging & Mental Health
interviewed the spouses of 27 participants recently diag-
nosed with MCI and reported that even at an early stage
of cognitive impairment, spouses did have to take on addi-
tional caring responsibilities. Bruce et al. (2008) assessed
51 MCI patient
caregiver dyads and using the ZBI
reported a similar figure of more than 30% (16 of 51 par-
ticipants) of caregivers having clinically significant bur-
den. They also reported similar factors were associated
with burden included caregiver reports of more behaviou-
ral, memory and depressive symptoms, and the patient’s
report of depression and cognitive difficulties. Burden
was not associated with any of the neuropsychological
measures tested. The study did not include measures of
caregiver psychological distress or have a control group
but did find the duration of cognitive symptoms to be a
significant factor.
The relationship between caregiver burden and
depression is complex and to some extent multidirectional
(Pearlin, Mullan, Semple, & Skaff, 1990). Clyburn et al.
Downloaded by [New York University] at 02:50 22 June 2015
(2000) examined the nature of the association using struc-
tural equation modelling of four proposed mechanisms
and found that in their study of Alzheimer’s disease and
caregiver stress, a model where burden mediated depres-
sion produced the best fit. Accordingly, we found that
caregiver burden was highly associated with both depres-
sive and anxiety sub-scores on the HAD Scale.
There has also been qualitative work into the MCI-
caregiver experience (Adams, 2006; Blieszner & Roberto,
2010; Blieszner, Roberto, Wilcox, Barham, & Winston,
2007; Lu & Haase, 2009). A range of negative emotions
are common including frustration, guilt and anger. The
changing nature of the relationship between the dyad and
the greater emphasis on caregiving, with a reduced level
of intimacy and communication was frequently discussed.
The experience of caring for someone with MCI may
present different challenges and sources of burden when
compared to caring for someone with diagnosed dementia.
There is a much greater degree of prognostic uncertainty
and generally, the caregivers will be at an early stage in
their caregiving position and may have had less time to
adjust to the role (Dean & Wilcock, 2012).
There are several limitations to this study. Although
this is one of the largest quantitative studies of caregiver
burden in MCI to date, it is still relatively small, with just
64 MCI-caregivers. It is therefore liable to potential type
II errors due to a lack of power. With greater numbers,
certain factors, such as participant cognition may have
achieved a statistically significant association with care-
giver burden. Greater numbers would have also allowed
for examination of the individual types of functional/
behavioural problems, to determine their relative contri-
bution to informant burden. This was a cross-sectional
study, so we cannot draw any inferences about the direc-
tion of causality between burden and anxiety and depres-
sive symptoms. We also only had limited information
about the history of our caregiver/informants and are thus
unable to quantify the numbers of those who may have
had pre-existing mental health problems, which may have
had an impact on perceived burden. Equally, although the
CBI-R measures change in the participant’s functional
77
and behavioural domains, we did not have a measure of
the degree of caregiving responsibility, which would be
useful to know as a possible contributor to burden.
Finally, our cohort may not be a representative sample as
all participants were seen in a university research clinic.
The educational achievement in our cohort may be a
reflection of this as well as a self-selection bias in those
participants volunteering to take part in research studies.
There is increasing recognition that there may be positive
aspects of caregiving in MCI and this is something that
would be valuable to explore in future studies (Werner,
2012).
Our results suggest that burden is a considerable prob-
lem in MCI. Although it does not appear to be as prevalent
as in dementia, caregiver burden in MCI shares some of
the same characteristics, such as a strong association with
challenging behaviours. Given that over half of participants
with MCI will develop dementia within five years (Gauth-
ier et al., 2006), the identification of burden early may
allow timely intervention studies. These can hopefully pre-
vent or reduce burden, with all it deleterious consequences
for both patient and caregiver. To the best of our knowl-
edge, only one such intervention study has been conducted,
a cognitive behavioural therapy-based approach for both
the patient with MCI and his/her caregiver. This interven-
tion did not improve caregiver burden in their study, which
may have been a reflection of the study size (Joosten-
Weyn Banningh, 2012). Future research should therefore
involve further intervention studies as well as large pro-
spective studies to allow detailed investigation of the etiol-
ogy of caregiver burden and its relationship with anxiety
and depression.
Acknowledgements
The authors would like to thank the participants and informants
who participated in this study. We also gratefully acknowledge
the contributions of Loren Mowzowski, Dr Zoe Terpening and
Dr Louisa Norrie for their assistance with data collection.
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