Sie sind auf Seite 1von 9

RESEARCH ARTICLE

Caregiver burden characterization in patients with


Alzheimers disease or vascular dementia
Grazia DOnofrio1, Daniele Sancarlo1, Filomena Addante1, Filomena Ciccone1, Leandro Cascavilla1,
Francesco Paris1, Michele Picoco1, Claudia Nuzzaci1, Anna Chiara Elia1, Antonio Greco1,
Ramona Chiarini1,2, Francesco Panza1,3 and Alberto Pilotto1,2
Geriatric Unit and Laboratory of Gerontology and Geriatrics, Department of Medical Sciences, IRCCS Casa Sollievo della Sofferenza, San
Giovanni Rotondo, Foggia, Italy
2
Geriatrics Unit, Azienda ULSS 16, Padova, Italy
3
Neurodegenerative Disease Unit, Department of Basic Medicine, Neuroscience, and Sense Organs, University of Bari Aldo Moro, Bari, Italy
Correspondence to: Daniele Sancarlo, MD, E-mail: d.sancarlo@operapadrepio.it
1

Objective: To characterize the differences of caregiver burden in patients with Alzheimers disease (AD)
and vascular dementia (VaD) in order to improve the care counselling and management plan.
Methods: We included 506 patients consecutively attending the Alzheimers Evaluation Unit of a
Geriatric Unit, evaluated with Mini Mental State Examination (MMSE), Clinical Dementia Rating
(CDR), Hamilton Rating Scale for Depression, and Neuropsychiatric Inventory. To all caregivers were
administered the Caregiver Burden Inventory (CBI), a 24-item multidimensional questionnaire in which
5 subscales explore 5 dimensions of caregiver burden: (1) CBI-Objective; (2) CBI-Developmental; (3)
CBI-Physical; (4) CBI-Social; and (5) CBI-Emotional.
Results: The present study included, respectively, 253 AD patients and 253 VaD patients. AD patients at
baseline showed a signicantly higher instruction level (p < .0001), higher grade of cognitive impairment (MMSE, p < .0001), and increased severity stage of dementia (CDR, p < .0001) than VaD patients.
AD caregivers, mainly females (p = 0.010), devoted signicantly more length of time care (in months,
p = 0.010) and time of daily care (in hours, p = 0.011) and showed a signicantly higher burden level
in CBI-Objective (p = 0.047), CBI-Physical (p < .0001), CBI-Social (p = 0.003), CBI-Emotional
(p < .0001), and CBI-total score (p < .0001), than VaD caregivers. In both caregiver groups, a higher
presence of spouses and sons (p < .0001) compared to other relatives was observed. AD caregiver
burden showed a signicant association with sex of caregivers and length of time care in months.
Conclusions: AD caregivers showed a higher burden level than VaD caregivers, and this appeared to be
associated with sex and length of time care. Copyright # 2014 John Wiley & Sons, Ltd.
Key words: caregiver burden; Alzheimers disease; vascular dementia
History: Received 14 March 2014; Revised 27 September 2014; Accepted 15 October 2014; Published online in Wiley Online
Library (wileyonlinelibrary.com)
DOI: 10.1002/gps.4232

Introduction
Dementia is a term that describes disorders causing
cognitive impairment severe enough to affect functional status and with devastating consequences for
the entire familiar network. The most common forms
of dementia are Alzheimers disease (AD) and vascular
dementia (VaD). The global prevalence of dementia is
rising and AD, which accounts for about 60% of all
Copyright # 2014 John Wiley & Sons, Ltd.

cases of dementia, represents an increasing challenge


for older adults, families, and health care systems
worldwide (Ferri et al., 2005).
One of the recurring themes in literature is the
individual response to caregiving demands. Results are
often different, with studies reporting that some caregivers are early overwhelmed by care responsibilities
and others showing stability or even decreases in the
burden over time (Gaugler et al., 2000). This variability
Int J Geriatr Psychiatry 2014

G. DOnofrio et al.

in caregiver response has often been explained in


terms of the burden models. With this terms is indicated a subjective measure of the physical, economic,
and psychosocial strain of caregiving, considered the
product of a dynamic interaction among caregiver resources, vulnerabilities, and care demands (Vitaliano,
1990). Informal caregivers reported higher levels of
depression and anxiety (Schulz et al., 1995; Mahoney
et al., 2005), use of psychotropic medication more
frequently (Clipp and George, 1990), engagement in
fewer protective health behaviours, and increased risk
of medical illness (Vitaliano et al., 2003; Son et al.,
2007) and mortality (Schulz and Beach, 1999).
Higher caregiver burden is also a predictor of early
institutionalization of the patients (Luppa et al.,
2008). Reviews of interventions on caregivers have
reported small but signicant effects upon burden
and have underlined the need for increased understanding of the dynamics of caregiving toward the
development of more targeted and effective practices
(Pinquart and Srensen, 2006).
Patient variables that have been associated with
increased caregiver burden included cognitive impairment, functional decline, and neuropsychiatric symptoms (NPS) (Coen et al., 1997; Black and Almeida,
2004; Machnicki et al., 2009). Equally, functional
decits have not been found to strongly predict caregiver burden with negative ndings in several studies
(Coen et al., 1997; Campbell et al., 2008). As pointed
out by Berger et al. (2005), caregiver burden remained
stable, and severe depression decreased over time suggesting the need of evaluating the relationship between
dementia symptoms and caregiver perceived burden
over time, in order to understand the changes in
the adaptation to the various caregiving stressors.
Moreover, large differences exist between data available on the consequences of caring for AD versus
VaD patients. The aim of this study was to determine the differences in term of caregiver burden due
to specic dementia subtypes in order to improve the
treatment and counselling of the familiar network and
of the patients.
Methods
Subjects

This study was conducted according to the World


Medical Associations 2008 Declaration of Helsinki
and the guidelines for Good Clinical Practice and the
Strengthening the Reporting of Observational Studies
in Epidemiology (STROBE) (Von Elm et al., 2007)
Copyright # 2014 John Wiley & Sons, Ltd.

and was approved by the local ethics committee.


Written informed consent for research was obtained
from each patient or from relatives or a legal guardian.
Patients consecutively evaluated from April 2009 to
January 2012 at the Alzheimers Evaluation Unit of the
Geriatric Unit of the IRCCS Casa Sollievo della
Sofferenza, San Giovanni Rotondo, Foggia, Italy were
screened for eligibility. Inclusion criteria were: (1) age
65 years; (2) ability to provide an informed consent
or availability of a relatives or a legal guardian in the
case of severe demented patients; (3) diagnosis of AD
or VaD; and (4) a complete neuropsychiatric assessment. Exclusion criteria were: presence of serious comorbidity, tumours and other diseases that could be
causally related to cognitive impairment (ascertained
blood infections, vitamin B12 deciency, anemia,
disorders of the thyroid, kidneys or liver), history of
alcohol or drug abuse, head trauma, and other causes
that can cause memory impairment. No specic
inclusion/exclusion criteria for caregivers were used.
Cognitive evaluation and diagnosis of dementia

In all patients, cognitive status was screened by means


of the Mini-Mental State Examination (MMSE)
(Folstein et al., 1975) and the Clinical Dementia Rating scale (CDR) (Hughes et al., 1982; Morris, 1993).
The MMSE was used to assess the orientation, memory, attention and calculation, language, ability to
follow commands, reading comprehension, ability to
write a sentence, and ability to copy a drawing. The
CDR was a scale designed to grade subjects from normal function through various stages of dementia. It is
composed of several domains assessing cognition and
function and rated according to the degree of cognitive
loss as follows: 0 (no dementia), 0.5 (uncertain or
deferred diagnosis), 1 (mild dementia), 2 (moderate
dementia), and 3 (severe dementia).
Dementia was diagnosed following the Diagnostic
and Statistical Manual of Mental DisordersFourth
Edition (DMS-IV) (APA, 1994). Diagnoses of
possible/probable AD were made according to the
criteria of the National Institute of Neurological and
Communicative Disorders and StrokeAlzheimers
Disease and Related Disorders Association Work
Group (NINCDS-ADRDA) (McKhann et al., 1984).
Diagnoses of possible/probable VaD were made according to the criteria of the National Institute of Neurological Disorders and StrokeAssociation Internationale
pour la Recherche et lEnseignement en Neurosciences
Work Group (NINDS-AIREN) (Roman et al., 1993).
In uncertain cases, differential diagnosis between AD
Int J Geriatr Psychiatry 2014

Caregiver burden in Alzheimer or vascular dementia

and VaD was based also on the Hachinski Ischemic


Score (Hachinski et al., 1975): scores 4 were considered as probable AD, scores 7 were diagnosed as
VaD. Diagnosis of AD, and VaD was always supported
by neuroimaging evidence (CT scan and/or NMR). In
particular, the presence of multiple cortical/subcortical
infarcts or an infarct in a strategic area such as the
thalamus or temporal lobe and/or lesions of the white
matter indicated probable VaD; the absence of the
above-mentioned cerebrovascular lesions indicated AD.
Affective and neuropsychiatric evaluation

Depressive symptoms were evaluated using the Hamilton


Rating Scale for Depression (HDRS) (Hamilton, 1967)
comprising 21 items. The following cut-offs for the
HDRS score were used: 25: severe depression; 1824:
moderate depression; 817: mild depression; and 7:
absence of depression (Hamilton, 1967). NPS were
evaluated with the Neuropsychiatric Inventory (NPI)
(Cummings et al., 1994) including the following 12
domains: delusions, hallucinations, agitation/aggression,
depression mood, anxiety, euphoria, apathy, disinhibition, irritability/lability, aberrant motor activity, sleep
disturbance, and eating disorder. For each domain the
severity and frequency of the behaviours are determined
according to the criteria provided for each domain. Frequency is rated from 1 to 4 and severity is scored from
1 to 3. The product (severity frequency) is calculated
for each behavioural change present during the previous
month or since the last evaluation.
Caregiving assessment

The following parameters were collected by a systematic


interview about the caregivers: gender, relationship with
the patient, length of time care (in months), and time of
daily care (in hours). To all caregivers were administered the Caregiver Burden Inventory (CBI) (Novak
and Guest, 1989; Zanetti et al., 1999).
The CBI is a 24-item multidimensional questionnaire in which 5 subscales explore 5 different dimensions of caregiver burden: (1) CBI-Objective: the
burden on the caregiver due to shortage of time (items
15); (2) CBI-Developmental: the caregivers sense of
being left behind, unable to enjoy the same expectations
and opportunities as his or her peers (items 610); (3)
CBI-Physical: feelings of fatigue and chronic health
problems (items 1114); (4) CBI-Social, which results
from a perceived conict of roles (items 1519); and
(5) CBI-Emotional, which originates from awareness
of negative feelings towards the patient that can be
Copyright # 2014 John Wiley & Sons, Ltd.

induced by the patients bizarre and unpredictable


behaviour (items 2024).
Scores for each item are evaluated using a 5-point
Likert scale ranging from 0 (not at all disruptive) to
4 (very disruptive) for a total ranging from 0 to 20
for each subscale, with the exception of the CBIPhysical which is composed 4-item: is then applied a
correction factor 1.25. The range of the total score
ranges from 0 to 96: a score >36 indicate a risk of
burning out whereas scores near or slightly above
24 indicate a need to seek some form of respite care.
The time to administer is approximately 1015 min.
Statistical analyses

For dichotomous variables, hypotheses regarding differences between the groups were tested using Fishers
exact test. This analysis was made using the 2-Way
Contingency Table Analysis available at the Interactive
Statistical Calculation Pages (The R Project for Statistical Computing; available at URL http://www.r-project.
org/). For continuous variables, normal distribution
was veried by the ShapiroWilk normality test and
the one-sample KolgomorovSmirnov test. For normally distributed variables, hypotheses regarding differences among the groups were compared by means of
the Welch two sample t-test or by means of the analysis
of variance (ANOVA) under general linear model. For
non-normally distributed variables, hypotheses regarding differences among the groups were compared by
means of the Wilcoxon rank sum test with continuity
correction or by means of the KruskalWallis rank
sum test. Finally, AD diagnosis as independent predictor of caregiver burden was assessed using univariate
multinomial logistic regression analysis (ANCOVA)
including into the model gender, length of time care
(in months), and time of day care (in hours). Risks will
be reported as odds ratios (OR) along with their 95%
condence interval (CI). All the statistical analyses were
made with the R Ver. 2.8.1 statistical software package
(The R Project for Statistical Computing; available at
URL http://www.r-project.org/). Tests in which the
p value was smaller than the Type I error rate
= 0.05 were declared signicant.
Results
Clinical and functional characteristics of patients

During the enrolment period, 570 elderly patients


were screened for the inclusion in the study. Of these,
12 patients were excluded because they were younger
Int J Geriatr Psychiatry 2014

G. DOnofrio et al.

than 65 years, 31 patients had an incomplete examination, and 21 patients had severe comorbidity associated with cognitive impairment. Thus, the nal
population included 506 patients, 183 men (36.2%),
and 323 women (63.8%) with a mean age of
78.04 years 5.70 and a range from 65 to 95 years.
253 patients had a diagnosis of AD and 253 of VaD. Demo-

graphic and clinical characteristics of AD patients and


VaD patients are summarized in Table 1. The two groups
of patients did not differ in age (p = 0.108), gender distribution (p = 0.165), HDRS (p = 0.856), and number of
medications (p = 0.157). AD patients had a signicantly
higher instruction level (6.62 vs. 5.13, p < 0.0001), higher
grade of cognitive impairment in MMSE (18.48 vs. 20.46,
p < 0.0001), and increased severity stage of dementia in
CDR (1.32 vs. 1.15, p < .0001) than VaD patients.
Conversely, AD patients showed a signicant lower
impairment in NPI (18.76 vs. 40.52, p < 0.0001) than
VaD patients.
Caregiver burden level

The general characteristics of AD and VaD caregivers


are summarized in Table 2. AD caregivers showed a
signicantly higher prevalence of females (54.9% vs.
43.5%, p = 0.010), more length of time care (16.28
vs. 14.35, p = 0.011), and more time of daily care

(8.15 vs. 5.72, p < 0.0001). Both groups of caregivers


showed a higher presence of spouses and sons
(p < 0.0001) compared to other relatives.
Caregiver burden level in AD caregivers and VaD
caregivers are summarized in Table 3. Caregivers of
AD patients showed a signicantly higher burden level
in CBI-Objective (12.04 vs. 11.48, p = 0.047), CBIPhysical (14.64 vs. 13.44, p < 0.0001), CBI-Social
(12.90 vs. 12.21, p = 0.003), CBI-Emotional (12.50 vs.
11.24, p < 0.0001), and total score of CBI (64.71 vs.
60.83, p < 0.0001), than caregivers of VaD patients.
The two groups of caregivers did not differ in CBIDevelopmental (12.63 vs. 12.46, p = 0.468). Univariate
multinomial logistic regression analysis was performed
as shown in Table 4. In this analysis, AD caregiver
burden showed a signicant association with sex of
caregivers and length of time care in months.
Discussion
In the present study, using a relatively large sample of
newly diagnosed dementia patients and their caregivers,
we investigated whether subtype of dementia is related
to reported caregiver burden. At the rst evaluation,
AD patients showed a worst MMSE than patients with
VaD. AD caregivers spend more time in caring and
showed a signicantly higher burden level in CBIObjective, CBI-Physical, CBI-Social, CBI-Emotional,

Table 1 Demographic and clinical characteristics of Alzheimers disease (AD) and vascular dementia (VaD) patients
AD

VaD

(n = 253)

(n = 253)

78.44 5.15
6590
99/154
60.9%
6.62 5.11
018
18.48 3.83
1123
1.32 0.51
12
18.08 4.93
024
18.76 16.35
067
2.40 1.68
06

77.60 6.23
6595
84/169
66.8%
5.13 4.04
018
20.46 3.20
1023
1.15 0.50
12
18.00 4.86
022
40.52 18.48
0108
2.08 1.41
07

Age (years)*
Range
Sex (M/F)
Female
Instruction level (years)*
Range
MMSE (score)*
Range
CDR*
Range
HDRS (score)*
Range
NPI (score)*
Range
N of medications*
Range

0.108
0.165
<0.0001
<0.0001
<0.0001
0.856
<0.0001
0.157

MMSE, Mini-Mental State Examination; CDR, Clinical Dementia Rating scale; HDRS, Hamilton Rating Scale for Depression;
NPI, Neuropsychiatric Inventory.
*Values are presented as mean standard deviation.

Copyright # 2014 John Wiley & Sons, Ltd.

Int J Geriatr Psychiatry 2014

Caregiver burden in Alzheimer or vascular dementia


Table 2 Characteristics of Alzheimers disease (AD) and vascular dementia (VaD) caregivers

Sex (M/F)
Female
Length of time care
(months)*
Range
Time of day care (h)*
Range
Relationship with patient
Spouses N (%)
Sons N (%)
Other relatives N (%)
Private carers N (%)

AD
(n = 253)

VaD
(n = 253)

114/139
54.9%
16.28 8.18

143/110
43.5%
14.35 8.89

0.010

640
8.15 0.72
712

636
5.72 2.20
412

126 (49.8)
91 (36.0)
30 (11.9)
6 (2.4)

172 (68.0)
54 (21.3)
6 (2.4)
21 (8.3)

0.011
0.000

<0.0001

*Values are presented as mean standard deviation.

Table 3 Caregiver burden level in Alzheimers disease (AD) and vascular dementia (VaD) caregivers explored with the Caregiver Burden Inventory
(CBI) subscales

CBI Total (score)*


Range
CBI-Objective (score)*
Range
CBI-Developmental (score)*
Range
CBI-Physical (score)*
Range
CBI-Social (score)*
Range
CBI-Emotional (score)*
Range

AD
(n = 253)

VaD
(n = 253)

64.71 11.45
3386
12.04 3.10
419
12.63 2.60
417
14.64 2.16
919
12.90 2.64
416
12.50 2.04
816

60.83 12.86
1986
11.48 3.14
420
12.46 2.60
418
13.44 2.78
519
12.21 2.48
516
11.24 2.55
418

<0.0001>
0.047
0.468
<0.0001
0.003
<0.0001

*Values are presented as mean standard deviation.

and CBI-total score, than VaD caregivers. Moreover,


AD caregiver burden showed a signicant association
with sex of caregivers and length of time care in months.
The literature on caregiving and dementia is considerable suggesting that the best recognized markers
of caregiving stress were burden and depression
(Pearlin et al., 1990). The present study suggested that
caring in AD patients may amplify caregiver burden
signicantly, especially for the female caregivers who
spend more time in care. These ndings were in line
with the pooled results of the extensive meta-analysis
by Yee and Schulz (2000) on the role of gender differences in the psychiatric morbidity of family caregivers,
supporting the idea that female caregivers reported
more NPS than male caregivers. Our ndings also
mirrored recent studies examining the relationship
among dementia patients and caregivers and reporting
level of burden. In the present study, AD patients had
higher grade of cognitive impairment and increased
Copyright # 2014 John Wiley & Sons, Ltd.

severity stage of dementia than VaD patients. Conversely, AD patients showed a signicant lower impairment in NPS than VaD patients. Germain et al.
(2009) reported the results of a Principal Component
Analysis on a sample of 1091 AD patient/caregiver
dyads suggesting that, although the strongest determinants of the caregiver burden were NPS, instrumental
activities of daily living (IADL) difculties, and time
spent caregiving, the impact of the degree of cognitive
impairment on burden is also signicant. The increased level of cognitive impairment and dementia
stage in our AD patients may partly explain the
increased caregiver burden of this group of patients
compared to those with VaD. Therefore, intervention
with drugs targeting cognitive symptoms may alleviate
also caregiver burden for AD and VaD patients. In
fact, neurotransmitter-focused drugs (cholinesterase
inhibitors and memantine) have demonstrated to
reduce the severity of cognitive symptoms and NPS
Int J Geriatr Psychiatry 2014

5.310)
2.006)
1.558)
0.534)
0.703)
0.271)
9.464
3.023
2.492
1.411
1.675
1.101

Copyright # 2014 John Wiley & Sons, Ltd.

*Vascular dementia caregivers were considered the reference category.

3.890
0.593
0.139
1.227
0.668
1.262
<.0001
0.034
0.551
<.0001
0.004
<.0001
CBI Total
CBI-Objective
CBI-Developmental
CBI-Physical
CBI-Social
CBI-Emotional

OR
p Value

(1.7456.034)
(0.0461.141)
( 0.3130.597)
(0.7891.666)
(0.2171.118)
(0.8551.669)

0.012
0.933
0.159
<.0001
0.074
<.0001

1.824
0.014
0.2238
0.840
0.315
0.920

(0.3973.250)
( 0.3410.313)
( 0.5700.093)
(0.5091.172)
( 0.0300.661)
(0.6141.227)

<.0001
<.0001
<.0001
<.0001
<.0001
0.0001

7.387
2.514
2.025
0.973
1.189
0.686

(
(
(
(
(
(

(95% CI)
OR
(95% CI)

p Value

OR

(95% CI)

p Value

Time of day care (h)


Length of time care (months)
Sex

Table 4 Univariate logistic regression analysis (ANCOVA) of Caregiver Burden Inventory (CBI) subscales, sex, length of time care (in months), or time of day care (in hours) for Alzheimers
disease (AD) vs. vascular dementia*(VaD) caregivers

G. DOnofrio et al.

in AD and VaD patients, so improving quality of life


and decreasing caregiver burden (Raina et al., 2008).
Moreover, the present study showed the presence of
high mean depression scores in both groups of AD
and VaD patients. In a recent systematic review investigating determinants of caregiver burden in dementia,
among NPS, patient depressive symptom appeared to
be one of the most consistent determinants of
caregiver burden (van der Lee et al., 2014). These
results conrmed those coming from a cross-sectional
analysis of data from a longitudinal study of patients
with AD and dementia with Lewy bodies suggesting
that only the presence of patient depressive symptoms
was associated with caregiver depression (Ornstein
et al., 2013). Therefore, patient depressive symptoms
may be the most important driver of the relationship
between NPS and caregiver depression suggesting
further testing of the impact of individual NPS
on caregivers.
The present ndings conrmed previous results of
Vetter et al. (1999) that also compared the level of distress of both AD and VaD caregivers and found that
the perceived severity of symptoms and the subsequent weight of caregiving burden was considerably
higher for AD carers than for VaD carers, especially
in late stage of impairment. Interestingly, in early
stages of disease, VaD caregivers lamented a much
higher burden than AD caregivers (Vetter et al.,
1999). In a similar vein, Yeager et al. (2010) reported
ndings on 784 patients with diagnoses of probable
AD or VaD and their caregivers showing that primary
dementia diagnosis was not associated with caregiver
burden. Moreover, NPS paired with poor IADL functioning were associated with the most important caregiver burden. Additionally, caregiver gender (female),
depressive symptoms, and being an adult child of the
care recipient also generated increased caregiver burden (Yeager et al., 2010). Although the ndings of this
latter study did not suggest an effect on caregiver burden linked to dementia subtypes, the results of Vetter
et al. (1999) and the present ndings suggested that, at
least in early stages of disease, AD caregivers may have
an increased burden compared to VaD caregivers,
with possible delayed long-term care placement for
patients with dementia of vascular origin.
At present, no effective method for reducing
distress or improving well-being in dementia caregivers
has been identied in systematic reviews of the existing
literature (Bourgeois et al., 1996; Gallagher-Thompson
and Coon, 2007; Gottlieb and Wolfe, 2002; Schulz
et al., 2005). Some meta-analyses reported small to medium effect sizes for different interventions for family
caregivers of older adults, with psychoeducational and
Int J Geriatr Psychiatry 2014

Caregiver burden in Alzheimer or vascular dementia

psychotherapeutic interventions showing the most consistent short-term effects on all outcome measures
(Srensen et al., 2002). Furthermore, studies with
neurotransmitter-focused drugs (Feldman et al., 2003)
and caregiver trainings (Hyer and Ragan, 2003) have
been tested for effectiveness on caregiver burden, with
only modest benecial impact. Similarly, some randomized clinical trials (RCTs) designed to address NPS in dementia, like Clinical Antipsychotic Trials in Intervention
Effectiveness (CATIE) (Schneider et al., 2003) and Cholinesterase Inhibitor and Atypical Neuroleptic in the
Management of Agitation in Alzheimer Disease
(CALM-AD) study (Howard et al., 2007), also have
resulted in poor outcomes or effect sizes. These unsatisfactory ndings suggest the need for research covering
non-pharmacologic treatments or other outcome
markers. Notwithstanding the lack of a clearly dened
and effective caregiver intervention, there is an emerging
consensus that optimal care in dementia may require an
integrated approach. Multimodal interventions with
cognitive stimulation and behavioural management
focusing on patient behaviour and caregiver skills,
together with the judicious use of pharmacotherapy,
psychoeducational intervention regarding management
of NPS, caregiver coping skills training, and environmental management may be especially helpful (Gauthier
et al., 2010). Ideally, such programs should be tailored
according to patient and caregiver factors to prevent
patient/caregiver crises. Results from the present study
supported the idea of intervention customization, as we
demonstrated that global cognitive impairment and
diagnosis category and aetiology may cause different
caregiver responses and levels of burden. In this sense,
caregivers of AD patients should be counselled regarding
the particular heavy burden associated with the nal
phase of the disease. Given the relatively higher physical
and objective burden found in the present study, especially for relatives engaged in their caregiving activities
for a longer and intensive period of time, interventions
should focus on the dementia-specic burden factors,
like aggressiveness and personality changes on the part
of the patients, especially for AD, and loss of control
and increased workload on the part of the caregivers
(Selwood et al., 2007). Our results also showed a greater
impact of emotional burden for AD caregivers than for
VaD caregivers. Successful intervention programs should
be designed to help caregivers in developing an effective
coping style when dealing with the manifestations of AD.
Such programs should provide adequate training for both
managing the day-to-day demands of the cognitively impaired relative (by relying, particularly, on problemfocused strategies) and monitoring the emotional distress
experienced by the caregiver (using emotion-focused
Copyright # 2014 John Wiley & Sons, Ltd.

strategies). Instrumental strategies seem to promote positive effect, with acceptance techniques consistently corresponding to lower levels of pathology. Wishfulness and
intrapsychic strategies, on the other hand, are related to
mental health problems (Pruchno and Resch, 1989).
Helping caregiving spouses to acknowledge and understand the changes in their cognitively impaired partner
and also to take action in appropriate ways are suggested
as the best ways to promote positive mental health and
alleviate stress (Graham et al., 1997).
Caregiver education programs should include components addressing the acknowledgement of the disease, the cognitive shift into a caregiving role, and the
development of emotional tolerance, with the aim of
establishing realistic goals, gauging the patients capacities, and designing opportunities for satisfying work
and leisure (Hepburn et al., 2003). In fact, the best
results have been obtained with multi-modal and intensive interventions and those targeting caregiver stress individually (Roth et al., 2005; Schulz and Martire, 2004).
These recommendations were based on previous studies
with enhanced counselling and support intervention for
dementia caregivers (Mittelman, 2003; Mittelman et al.,
2004), the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) multicenter trial
(Ball et al., 2002), and the more recent RCTs Resources
for Enhancing Alzheimers Caregiver Health (REACH)
I (Schulz et al., 2003; Gitlin et al., 2003) and II (Lykens
et al., 2014) with multicomponent interventions,
among others (Srensen et al., 2002).
Limitations of the present study were the absence of
data about the caregiver age and instruction level and
the study population comprising only Caucasian patients recruited in a single centre, so it is possible that
our ndings may not be applicable in other populations. Larger prospective multicenter studies are therefore needed to conrm our ndings.

Conclusion
In conclusion, we found that CBI may be a useful tool
in the prediction of caregiver burden and correlated
well with months of care and hours of daily care. In
fact, AD caregivers showed a higher burden level than
VaD caregivers, and this appeared to be associated
with sex and length of time care. Interventions that
seek to reduce caregiver burden should address intrinsic specic differences of every patients, also linked to
dementia diagnosis, and developing tailored action
plans to improve the disease management and the
resource consumption.
Int J Geriatr Psychiatry 2014

G. DOnofrio et al.

Conict of interest
None declared.

Key Points
Alzheimers disease (AD) and vascular
dementia (VaD) are common in older
people, determining relevant social and
human consequences for the patients and
their caregivers.
Informal caregivers reported higher levels of
depression and anxiety, use of psychotropic
medication more frequently, engagement
in fewer protective health behaviours,
and increased risk of medical illness and
mortality. High caregiver burden is also a
predictor of early institutionalization of
the patients.
The present study attempted to investigate
the factors associated with an independent
etiology of caregiver burden in AD and
VaD caregivers using the Caregiver Burden
Inventory.
AD caregivers showed a higher burden level
than VaD caregivers, and this appeared to
be associated with sex and length of time
care. Implications for clinical practices
were discussed.

References
American Psychiatric Association. 1994. Diagnostic and statistical manual of mental
disorders (4th edn). APA: Washington.
Ball K, Berch D, Helmers K, et al. 2002. Effects of cognitive training interventions
with older adults: a randomized controlled trial. JAMA 288: 22712281.
Berger G, Bernhardt T, Weimer E, et al. 2005. Longitudinal study on the relationship
between symptomatology of dementia and levels of subjective burden and depression among family caregivers in memory clinic patients. J Geriatr Psychiatry Neurol
18: 119128.
Black W, Almeida OP. 2004. A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. Int
Psychogeriatr 16: 295315.
Bourgeois M, Schulz R, Burgio L. 1996. Interventions for caregivers of patients with
Alzheimers disease: a review and analysis of content, process, and outcomes. Int
J Aging Hum Dev 43: 3592.
Campbell P, Wright J, Oyebode J, et al. 2008. Determinants of burden in those who
care for someone with dementia. Int J Geriatr Psychiatry 23: 10781085.
Clipp EC, George LK. 1990. Psychotropic drug use among caregivers of patients with
dementia. J Am Geriatr Soc 38: 227235.
Coen RF, Swanwick GR, OBoyle CA, Coakley D. 1997. Behaviour disturbance and
other predictors of carer burden in Alzheimers disease. Int J Geriatr Psychiatry
12: 331336.
Cummings JL, Mega M, Gray K, et al. 1994. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology 44 : 23082314.
Feldman H, Gauthier S, Hecker J, et al. 2003. Efcacy of donepezil on maintenance of
activities of daily living in patients with moderate to severe Alzheimers disease and
the effect on caregiver burden. J Am Geriatr Soc 51: 737744
Ferri CP, Prince M, Brayne C, et al. 2005. Global prevalence of dementia: a Delphi
consensus study. Lancet 366: 21122117.

Copyright # 2014 John Wiley & Sons, Ltd.

Folstein M, Folstein S, McHugh PR. 1975. Mini-mental state: a practical method


for grading the cognitive state of patients for the clinician. J Psychiatr Res 12:
189198.
Gallagher-Thompson D, Coon D. 2007. Evidence-based psychological treatments for
distress in family caregivers of older adults. Psychol Aging 22: 3751.
Gaugler JE, Davey A, Pearlin LI, Zarit SH. 2000. Modeling caregiver adaptation over time: the longitudinal impact of behavior problems. Psychol Aging
15: 437450.
Gauthier S, Cummings J, Ballard C, et al. 2010. Management of behavioral problems
in Alzheimers disease. Int Psychogeriatr 22: 346372.
Germain S, Adam S, Olivier C, et al. 2009. Does cognitive impairment inuences
burden in caregivers of patients with Alzheimers disease? J Alzheimers Dis 17:
105114.
Gitlin LN, Belle SH, Burgio LD, et al. 2003. Effect of multicomponent interventions
on caregiver burden and depression: The REACH multisite initiative at 6-month
follow-up. Psychol Aging 18: 361374.
Gottlieb B, Wolfe J. 2002. Coping with family caregiving to persons with dementia: A
critical review. Aging Ment Health 6: 325342.
Graham C, Ballard C, Sham P. 1997. Carers knowledge of dementia, their coping
strategies and morbidity. Int J Geriatr Psychiatry 12: 931936.
Hachinski VC, Iliff LD, Zilhka E, et al. 1975. Cerebral blood ow in dementia. Arch
Neurol 32: 632637.
Hamilton M. 1967. Development of a rating scale for primary depressive illness. Br J
Soc Clin Psychol 6: 278283.
Hepburn K, Lewis M, Sherman CW, Tornatore J. 2003. The savvy caregiver program:
Developing and testing a transportable dementia family caregiver training program. Gerontologist 43: 908915.
Howard RJ, Juszczak E, Ballard CG, et al. 2007. Donepezil for the treatment of agitation in Alzheimers disease. N Engl J Med 357: 13821392.
Hughes CP, Berg L, Danziger WL, Coben LA, Martin RL. 1982. A new clinical scale
for the staging of dementia. Br J Psychiatry 140: 566572.
Hyer LA, Ragan AM. 2003. Training in long-term care facilities: Critical issues. Clin
Gerontol 25: 197239.
van der Lee J, Bakker TJ, Duivenvoorden HJ, Dres RM. 2014. Multivariate models of
subjective caregiver burden in dementia: a systematic review. Ageing Res Rev 15:
7693.
Luppa M, Luck T, Brahler E, Konig HH, Riedel-Heller SG. 2008. Prediction of
institutionalisation in dementia. A systematic review. Dement Geriatr Cogn Disord
26: 6578.
Lykens K, Moayad N, Biswas S, Reyes-Ortiz C, Singh KP. 2014. Impact of a community based implementation of REACH II program for caregivers of Alzheimers patients. PLoS One 9: e89290.
Machnicki G, Allegri RF, Dillon C, Serrano CM, Taragano FE. 2009. Cognitive, functional and behavioral factors associated with the burden of caring for geriatric patients with cognitive impairment or depression: evidence from a South American
sample. Int J Geriatr Psychiatry 24: 382389.
Mahoney R, Regan C, Katona C, Livingston G. 2005. Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr
Psychiatry 13: 795801.
McKhann G, Drachman D, Folstein M, et al. 1984. Clinical diagnosis of Alzheimer
disease: report of the NINCDS-ADRDA work group under the auspices of Department of Health and Human Service Task Force on Alzheimers disease. Neurology
34 : 939944.
Mittelman M. 2003. Psychosocial intervention for dementia caregivers: What can it
accomplish? Int Psychogeriatr 15: 247249.
Mittelman M, Roth D, Coon D, Haley W. 2004. Sustained benet of supportive intervention for depressive symptoms in Alzheimers caregivers. Am J Psychiatry 161:
850856.
Morris JC. 1993. The Clinical Dementia Rating (CDR): current version and scoring
rules. Neurology 43: 24122414.
Novak M, Guest C. 1989. Application of a multidimensional caregiver burden inventory. Gerontologist 29: 798803.
Ornstein K, Gaugler JE, Devanand DP, et al. 2013. The differential impact of unique
behavioral and psychological symptoms for the dementia caregiver: how and why
do patients individual symptom clusters impact caregiver depressive symptoms?
Am J Geriatr Psychiatry 21: 12771286.
Pearlin LI, Mullan JT, Semple SJ, Skaff MM. 1990. Caregiving and the stress process:
an overview of concepts and their measures. Gerontologist 30: 583594
Pinquart M, Srensen S. 2006. Helping caregivers of persons with dementia:
which interventions work and how large are their effects? Int Psychogeriatr
18: 577595.
Pruchno RA, Resch NL. 1989. Mental health of caregiving spouses: coping as mediator, moderator, or main effect? Psychol Aging 4: 454463.
Raina P, Santaguida P, Ismaila A, et al. 2008. Effectiveness of cholinesterase inhibitors
and memantine for treating dementia: evidence review for a clinical practice
guideline. Ann Intern Med 148: 379397.
Roman GC, Tatemichi TK, Erkinjuntti T, et al. 1993. Vascular dementia: diagnostic
criteria for research studies. Report of the NINDS-AIREN International Workshop. Neurology 43: 250260.

Int J Geriatr Psychiatry 2014

Caregiver burden in Alzheimer or vascular dementia


Roth D, Mittelman M, Clay O, Madan A, Haley W. 2005. Changes in social support as
mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimers disease. Psychol Aging 20: 634644.
Schneider LS, Ismail MS, Dagerman K, et al. 2003. Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE): Alzheimers Disease trial. Schizophr Bull 29: 5772.
Schulz R, Beach SR. 1999. Caregiving as a risk factor for mortality: the Caregiver
Health Effects Study. JAMA 282: 22152219.
Schulz R, Martire L. 2004. Family caregiving of persons with dementia: Prevalence,
health effects, and support strategies. Am J Geriatr Psychiatry 12: 240249.
Schulz R, OBrien AT, Bookwala J, Fleissner K. 1995. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist 35: 771791.
Schulz R, Burgio L, Burns R, et al. 2003. Resources for Enhancing Alzheimers
Caregiver Health (REACH): Overview, site-specic outcomes, and future
directions. Gerontologist 43: 514520.
Schulz R, Martire L, Klinger J. 2005. Evidence-based caregiver interventions in geriatric psychiatry. Psychiatr Clin North Am 28: 10071038.
Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G. 2007. Systematic review
of the effect of psychological interventions on family caregivers of people with
dementia. J Affect Disorders 101: 7589.
Son J, Erno A, Shea DG, et al. 2007. The caregiver stress process and health outcomes.
J Aging Health 19: 871887.

Copyright # 2014 John Wiley & Sons, Ltd.

Srensen S, Pinquart M, Duberstein P. 2002. How effective are interventions with


caregivers? An updated meta-analysis. Gerontologist 42: 356372.
Vetter PH, Skrauss S, Steiner O, et al. 1999. Vascular Dementia versus dementia of
Alzheimers type: Do they have differential effects on caregivers burden? J Gerontol
54B: S93-S98
Vitaliano PP. 1990. A model of burden in caregivers of DAT patients. In Alzheimers
Disease Treatment and Family Stress, Light E, Lebowitz BD (eds). Hemisphere
Publishing Corporation: New York; 267291.
Vitaliano PP, Zhang J, Scanlan JM. 2003. Is caregiving hazardous to ones physical
health? A meta-analysis. Psychol Bull 129: 946972.
Von Elm E, Altman DG, Egger M, et al.. 2007. STROBE Initiative. Strengthening the
Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. BMJ 335: 806808.
Yeager CA, Hyer LA, Hobbs B, Coyne AC. 2010. Alzheimers disease and vascular
dementia: the complex relationship between diagnosis and caregiver burden. Issues
Ment Health Nurs 31: 376384.
Yee JL, Schulz R. 2000. Gender differences in psychiatric morbidity among family
caregivers: a review and analysis. Gerontologist 40: 147164.
Zanetti O, Geroldi C, Frisoni GB, Bianchetti A, Trabucchi M. 1999. Contrasting
results between caregivers report and direct assessment of activities of daily living
in patients affected by mild and very mild dementia: the contribution of the
caregivers personal characteristics. J Am Geriatr Soc 47: 196202.

Int J Geriatr Psychiatry 2014