Caring for a relative with dementia: family caregiver burden

Evridiki Papastavrou, Athena Kalokerinou, Savvas S. Papacostas, Haritini Tsangari & Panagiota Sourtzi
Accepted for publication 19 January 2007
Evridiki Papastavrou PhD RN
Lecturer
School of Health Sciences, Department of
Nursing, Cyprus University of Technology,
Cyprus
Athena Kalokerinou PhD RN
Assistant Professor
School of Nursing, University of Athens,
Athens, Greece
Savvas S. Papacostas MD
Senior Consultant Neurologist
Cyprus Institute of Neurology and Genetics,
Cyprus and Adjunct Professor of Neurology,
University of Rochester, New York, USA
Haritini Tsangari PhD
Assistant Professor of Statistics
Intercollege, Cyprus
Panagiota Sourtzi PhD RN
Associate Professor
School of Nursing, University of Athens,
Athens, Greece
Correspondence to Evridiki Papastavrou:
e-mail: [email protected]
PAPASTAVROU E. , KALOKERI NOU A. , PAPACOSTAS S. S. , TSANGARI H. & PAPASTAVROU E. , KALOKERI NOU A. , PAPACOSTAS S. S. , TSANGARI H. &
SOURTZI P. ( 2007) SOURTZI P. ( 2007) Caring for a relative with dementia: family caregiver burden.
Journal of Advanced Nursing 58(5), 446457
doi: 10.1111/j.1365-2648.2007.04250.x
Abstract
Title. Caring for a relative with dementia: family caregiver burden
Aim. This paper is a report of part of a study to investigate the burden experienced
by families giving care to a relative with dementia, the consequences of care for the
mental health of the primary caregiver and the strategies families use to cope with
the care giving stressors.
Background. The cost of caring for people with dementia is enormous, both mon-
etary and psychological. Partners, relatives and friends who take care of patients
experience emotional, physical and nancial stress, and care giving demands are
central to decisions on patient institutionalization.
Method. A volunteer sample of 172 caregiver/care recipient dyads participated in the
study in Cyprus in 20042005. All patients were suffering fromprobable Alzheimers
type dementia and were recruited from neurology clinics. Data were collected using
the Memory and Behaviour Problem Checklist, Burden Interview, Center for
Epidemiological Studies-Depression scale and Ways of Coping Questionnaire.
Findings. The results showed that 6802% of caregivers were highly burdened and
65%exhibited depressive symptoms. Burden was related to patient psychopathology
and caregiver sex, income and level of education. There was no statistically signi-
cant difference in level of burden or depression when patients lived in the community
or in institutions. High scores in the burden scale were associated with use of emo-
tional-focused coping strategies, while less burdened relatives used more problem-
solving approaches to care-giving demands.
Conclusion. Caregivers, especially women, need individualized, specic training in
how to understand and manage the behaviour of relatives with dementia and how to
cope with their own feelings.
Keywords: caregiver burden, coping, dementia, empirical research report, family
carers, nursing
Introduction
Caregiver burden has been dened as a negative reaction to
the impact of providing care on caregivers social, occupa-
tional and personal roles (Given et al. 2001). It is also well-
established that the symptoms of dementia are an important
source of caregiver burden and stress, which in turn is a
major determinant of institutionalization for dementia
sufferers (Donaldson et al. 1998). There is also evidence that
chronic stress exposure in caregivers of patients with
dementia is associated with physical health decline, psychi-
atric morbidity and poor quality of life (Rose-Rego et al.
ORI GI NAL RESEARCH
JAN
446 2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd
1998, Clyburn et al. 2000, Bell et al. 2001, Connell et al.
2001). All these factors may result in poor standards of care,
neglect or even abuse of the patient, and indicate the need for
patient institutionalization.
To reduce stress and strengthen partnerships, nurses need
to understand better individual carers experiences and be
more in tune with their worries and concerns, so that
appropriate care and support can be provided. The recogni-
tion of high levels of caregiver morbidity demands a holistic
approach and nurses needs to be more responsive to the needs
of both carers and care-recipients rather than focussing on the
patient alone (Cheung & Hocking 2004).
Background
Theoretical framework
The burden of dementia care giving was explored within the
framework of the general stress theories. Like stress,
caregiver burden is hypothesized to be an acute reaction to
providing care that arises as new care demands are
introduced or existing care demands intensify (Given et al.
1999). When care demands become increasingly challenging,
caregivers respond by employing strategies to meet care
demands and decrease the burden of providing care (Sher-
wood et al. 2005). Caregivers who are unable to adapt or
modify their strategies to meet care demands experience
burden (Given et al. 1999). Pearlin et al. (1990) have
incorporated the problematic areas of care into a model of
care for patients with Alzheimers disease, which is a specic
application of the stress-coping model of Lazarus and
Folkman (1984). They claim that care giving stress is a
multidimensional phenomenon that consists of four major
domains: the framework of care (including the characteristics
of the caregiver, type of the dyadic relationship and availab-
ility of social support); the stressful situations of care giving,
which may be primary (such as the problematic behaviour of
the patient) or secondary (such as other commitments of the
caregiver); factors (such as the coping strategies and man-
agement of care) that moderate the perception of stress and
consequences of care giving for the general wellbeing of the
caregiver.
Variables related with caregiver burden in dementia
Many researchers have assessed and described in different
ways the individual characteristics of both the patient and
caregiver that predispose caregivers to burden. Regarding the
patient, studies have found a statistically signicant correla-
tion between burden and the functional condition or ability
of the patient to cope with the daily living activities
(Schumacher et al. 1993, Faison et al. 1999, Clyburn et al.
2000, Gallant & Connell 2003). Burden has also been related
to certain characteristics of the relative, such as age and the
presence of illness (Connell et al. 2001), and burden may be
an important criterion for moving the patient into institu-
tional care (Yaffe et al. 2002). Recent meta-analyses
(Pinquart & Sorensen 2003) support the fact that physical
dependency is positively related with caregiver depression,
but in the case of patients with dementia this problem is of
secondary importance, given the priority of behavioural
disorders like aggressiveness, wandering and disorientation.
More recent studies report a negative correlation between
physical dependency and burden (Sherwood et al. 2005). It is
possible that in cases when the need for physical care is
apparent, the extended family tends to offer more support to
the primary caregiver (Given et al. 1999).
Research on patients behavioural problems is more clear
and the results are more consistent in relation to the
correlation of problematic behaviour with burden (Baumgar-
den et al. 1992, Schulz et al. 1995, Donaldson et al. 1998,
Faison et al. 1999, Robinson et al. 2001, Gallicchio et al.
2002, Hooker et al. 2002, Rymer et al. 2002, Andrieu et al.
2003, Covinsky et al. 2003). These problems have also been
described as a major risk factor in moving the patient into
institutional care (Acton 1997, Chou 1999, Armstrong 2000,
Clyburn et al. 2000, Bell et al. 2001, Hebert et al. 2001, Rees
et al. 2001).
The relationship between cognitive impairment and burden
is less clear, either giving a positive correlation (Matsuda
1995, Nagatomo et al. 1999) or no direct relation (Gonzales-
Salvador et al. 1999, Coen et al. 2002).
Consequences of burden
Family caregivers of patients with dementia experience
increased physical and psychological morbidity (Clyburn
et al. 2000, Bell et al. 2001, Connell et al. 2001), and may
develop hyperlipidaemia, hyperglycaemia (Vitaliano et al.
1995, Davies 1996) and insufciency of the cellular immune
system (Kiecolt-Glaser et al. 1995, Davies 1996, Irwin et al.
1997, Vendhara et al. 1999, Mills et al. 2004, Thomson
et al. 2004). A consistent nding is that depression is a
major consequence of care (Malone-Beach & Zarit 1995,
Teri 1997, Clyburn et al. 2000, Marriot et al. 2000,
Gallicchio et al. 2002) which remains even after the
institutionalization or death of the patient (Bass et al.
1991, Zarit & Whitlach 1992, Bodnar & Kiecolt-Glaser
1994, Aneshensel et al. 1995, Wright et al. 1999, Gallagher-
Thompson et al. 2001).
JAN: ORIGINAL RESEARCH Caring for a relative with dementia
2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd 447
The diagnosis of a relative with dementia leads to many
losses, and caregivers experience grief which is very similar to
that of death (Rudd et al. 1999) or even worse. This is
described as disenfranchised grief (Doka 1989) because the
loss cannot be recognized openly or publicly and the relative
is not accepted in expressing grief and is socially supported,
as happens with real death.
Gender differences in the experience of burden
Caregiver sex is another frequently mentioned variable in the
literature. It has been observed that women are more likely to
experience social restrictions because of their caring role
(Stoller 1990, Kramer & Kipnis 1995, Montgomery 1996),
and they experience higher levels of burden when compared
with men caregivers (Barusch & Spaid 1996, Wallsten 2000,
Gallicchio et al. 2002, Thomson et al. 2004). The greatest
proportion of caregivers (73%) of patients with dementia
consists of women (Ory et al. 1999). and this increases their
vulnerability to depression (Yee & Schultz 2000). High levels
of stress, tension(Collins &Jones 1997, Gallicchioet al. 2002),
paranoid symptoms (Parks & Pilisuk 1991), perception of ill
health (Collins &Jones 1997) and lower levels of quality of life
(Collins & Jones 1997, Rose-Rego et al. 1998) are also found.
Sex differences have been reported in the ways people use
to cope with the several stressors of caregiving. Women seem
to have lower levels of mastery (Rose-Rego et al. 1998) and
use less effective coping strategies (Thoits 1995), while men
use mostly problem-solving approaches (Thomson et al.
2004). Some authors explain sex differences by suggesting
that men receive more informal support than women (Allen
et al. 1996, Ingersoll-Dayton et al. 1996).
The study
Aim
The aims of this study were to investigate the burden of
giving care to a relative with dementia, consequences of care
for the mental health of the primary caregiver and family
strategies for coping with the stress of care.
The specic research questions addressed were
What is the relationship of caregiver burden with the
behaviour of the patient and the reaction of the caregiver
to the patients problems?
Is there a relationship between the caregiver burden and the
caregivers depressive symptoms?
Is caregiver burden related to specic coping strategies?
Does institutionalization of the patient reduce caregiver
burden?
Design
This was a cross-sectional, descriptive study in which several
methods were used for the selection and analysis of data. The
data were collected in 20042005 in Cyprus.
Participants
Families were recruited from neurology clinics and inter-
viewed at their homes. A total of 200 families were
approached, and 172 patient-primary caregiver dyads agreed
to participate. The refusal of 28 families is indicative of the
social prejudice towards the disease, which is considered a
stigma in this society.
Of the 172 patients with the diagnosis of probable
Alzheimers disease, 130 were community residents and 42
were selected from long-term institutions to answer the
research question about burden of care and negative conse-
quences when the patient is institutionalized. Care-recipients
ages ranged from 52 to 97 years (mean 75, SD SD 793).
The inclusion criteria for caregivers were to have the most
frequent contact with the patient and the greatest responsi-
bility for care for at least 1 year, and not to have psychiatric
illness or mental disability. The caregiver sample of consisted
of 40 men and 132 women. The relationship of the patient to
the caregiver was that of a partner, daughter, son or other
relative, such as a sister or a daughter in law.
Data collection
Data were collected using four instruments, which were
completed by the researcher during an interview. The
instruments measured the cognitive and behavioural status
of the patient, level of burden of the caregiver, presence of
depressive symptoms and strategies used by caregivers to
cope with the stressors of care.
Cognitive and behavioural status of the patient
Care recipients cognitive and behaviour status was assessed
using the Memory and Behaviour Problem Checklist 1990 R
(MBPC) (Zarit 1990). The purpose of the MBPC is to
determine how frequently a patient with dementia engages in
problematic behaviours and which problems are especially
upsetting for family members. There are two parts to the
MBPC, and it consists of 26 items. The rst part determines
the frequency with which common problems have occurred,
and the care recipients cognitive and behaviour status is
scored on a Likert scale of 04 (0, never happens; 4, happens
every day). The timeframe used was 1 week and this was
selected to minimize the recall task for informants. The
E. Papastavrou et al.
448 2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd
second part of the MBPC obtains the informants subjective
appraisal of each problem and measures the degree to which
behaviours bothered or upset the caregiver.
In the current study, reliability was measured using
Cronbachs alpha and was found to be high, with a 085
for frequency of problem behaviours and caregiver reaction
to problem behaviours. Factor analysis was also performed to
group the 26 items of the MBPC in a small number of
important factors. The analysis gave seven factors, which
explained 627% of the variation (see Papastavrou 2005,
Papastavrou et al. 2006 for more details of the psychometric
analysis).
Caregiver burden
Caregiver burden was assessed using the Burden Interview
(BI), which was designed to assess the stress experienced by
family caregivers of older people and disabled persons.
Caregivers are asked to respond to a series of 22 questions
about the impact of the patients disabilities on their life. In
the current study, Cronbachs alpha was found to be 093.
Factor analysis gave four factors that explained 6392% of
the variation. These factors were taken as the dimension of
burden and were: personal strain, role strain, relational
deprivation and management of care (Papastavrou 2005,
Papastavrou et al. 2006).
Center for Epidemiological Studies Depression Scale
The Center for Epidemiological Studies Depression Scale
(CES-D) is a 20-item scale used to assess the overall level of
depression experienced in the past week (Raddloff 1977).
Psychometric properties have been shown to be strong in
many studies, including the translated Greek version (Madi-
anos et al. 1992). Cronbachs a in the present study was 069.
Ways of Coping Questionnaire
The Greek translation consists of 38 items with a Cronbachs
alpha of 073. Factor analysis produced ve factors that
explained 323% of the variation (Karademas 1998). These
were positive approach, seeking social support, wishful
thinking, avoidance strategies and assertiveness. In the pre-
sent study, Cronbachs alpha for the overall scale was 085.
Ethical considerations
The study was approved by the research committee of the
Institute of Neurology and Genetics and the Ministry of
Health. All caregivers received an information sheet outlining
the purpose of the study, names of the research centres
undertaking the research and a statement that responses were
anonymous. Contact details of the researchers were also
given to allow participants to gain further details about the
study. Signed consent was obtained.
Data analysis
The data were analysed using independent samples t-tests,
correlation analysis and one-way ANOVA ANOVA followed by
post hoc adjustments for multiple comparisons.
Results
Most caregivers were daughters (483%), followed husbands
or wives (413%), sons (58%) and others (41%). The mean
age of caregivers was 5680 years and that of care recipients
7552 years, with standard deviations 1338 and 793 years,
respectively. Care recipients in institutions had a mean age of
7976 years and those in the community had a mean age of
7450 years.
Table 1 gives summary statistics for the main study
variables for caregivers of patients in the community and in
institutions. The variables are formed as overall indices from
the series of questions for each. Since the data are approxi-
mately normally distributed, means and standard deviations
are reported. In the same table, we also show the results from
Table 1 Summary statistics and
independent sample t-tests for the main
study variables (n 172; 130 in
community, 42 in institutions)
Variable Place of residence Mean SD SD t P-value
Burden (BI) Home 5029 1735 155 012
Institution 4560 1613
Behaviour/memory (MBPC) Home 4880 2066 129 020
Institution 5333 1654
Depression (CES-D) Home 1868 727 028 078
Institution 1905 704
Coping strategies (WCQ) Home 4765 2142 033 074
Institution 4869 1622
BI, burden interview; MBPC, memory and behaviour problem check list; CES-D, Centre of
Epidemiological Studies Depression; WCQ, Ways of Coping Questionnaire.
JAN: ORIGINAL RESEARCH Caring for a relative with dementia
2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd 449
the independent samples t-tests, which identify signicant
differences in these variables between the community and
institution participants. The P-values are all very high,
indicating that there are no statistically signicant differences
between the two groups for any of the variables. Therefore,
regarding the overall level of burden, there were no statisti-
cally signicant differences when the patient was placed in a
long-term care setting compared with living in the commu-
nity (P 012). However, when burden was represented by
its four factors there were some differences. There was a
difference in relational deprivation, which seemed to be
higher when the patient lived at home (mean 1040 for
community and mean 869 for institution). It is also
interesting that when the patient lived in a long-term care
setting, factor 4 of the BI (management of care) was higher
(community mean 266, institution mean 354). These
differences are presented in Table 2.
Statistically signicant correlations were found between
the main study variables using Pearson correlation coef-
cients. Burden had a positive relation with overall MBPC
score (r 054), overall depressive symptoms (r 057) and
caregiver overall reaction to the patients behavioural
problems (r 063). Moreover, MBPC was positively corre-
lated with Ways of Coping Questionnaire (WCQ) (r 089)
and depression (r 035), and reaction was positively
correlated with depression (r 044). All the correlations
were highly statistically signicant, with P-values <001. If
we consider the seven categories of MBPC separately, we can
see that each category is positively related to burden. The
highest correlation coefcient is 044 for factor 2, which
means that the most stressful category of problems is the one
containing questions related with the aggressive behaviour of
the patient. These results are demonstrated in Table 3. In the
same table, we can also see that, regarding patient behaviour
problems (which are positively correlated with depression,
previously noted), the kind of behaviour causing most
caregiver depressive symptoms is related to apathy (r 029).
The relationship between coping strategies and burden is
shown in Table 4. The only statistically signicant correla-
tions are between burden and positive coping strategies
(negative correlation, r 020), and between burden and
wishful thinking (positive correlation, r 016). The rst,
negative correlation means that when caregivers use specic
strategies such as problem-solving and seeking social support,
the level of burden is lower. The positive correlation between
burden and wishful thinking conrms the Lazarus and
Folkman (1984) theory that emotionally focused coping
strategies are positively related to stress. Finally, there is a
statistically signicant positive correlation between depres-
sion and three of the four factors of burden, i.e. personal
strain, role strain and relational deprivation, with coefcients
056, 051 and 047, respectively.
Table 2 Burden factors in relation to
patients place of residence (n 172; 130
in community, 42 in institutions)
Place of residence Mean SD SD t P-value
Factor 1: personal strain
Home 2330 812 148 014
Institution 2114 851
Factor 2: role strain
Home 1392 611 163 010
Institution 1221 516
Factor 3: relational deprivation
Home 1040 458 213 003
Institution 869 430
Factor 4: management of care
Home 266 164 306 <0001
Institution 354 159
Table 3 Correlation coefcients of burden and depression with the factors of the Memory and Behaviour Problem Checklist (MBPC)
Factor 1:
inactivity
Factor 2:
aggressive
behaviour
Factor 3:
dangerous
behaviour
Factor 4:
attachment
behaviour
Factor 5:
memory
problems
Factor 6:
communication
problems
Factor 7:
depressive
symptoms
Burden 037* 044* 036* 035* 022* 023* 025*
Depression 029* 026* 022* 024* 012 014 019

*Correlation signicant at 001 level.

Correlation signicant at 005 level.

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450 2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd
Sex differences were also examined. Independent samples
t-test analysis showed that burden was different between men
and women (P-value 0048). More specically, women had
a higher burden score than men (5057 and 4445 respect-
ively, with standard deviations 1638 and 1889). If we
examine the factors of burden and their relation to sex, as
shown in Table 5, we can see that factor 3 relational
deprivation is the only one that statistically signicantly
affects gender differently (P-value 002), affecting women
more than men. Personal strain also showed a marginal
difference for women (P-value 009). Sex differences were
also observed in the coping strategies used, where the results
showed that women use seeking social support
(P-value < 001) and wishful thinking more than men
(P-value 003). Table 6 gives all the sex differences in
coping strategies. Regarding depression, again there was
statistical difference (P-value 0011), with women having
higher depression scores than men (1954 and 1625,
respectively, with standard deviations of 743 and 575).
An examination of burden in relation to other independent
variables (one-way ANOVA ANOVA) demonstrated that there were
differences at the level of burdenaccording tolevel of education
(F 369, P 001) and level of income (F 32, P 002)
of the caregiver. With regard to education, post hoc multiple
comparisons (Bonferroni) showed that the statistically signi-
cant difference was between the lowest and highest levels of
education, where elementary school graduates had higher
burden compared with MSc/PhD holders (P 0046). With
regard to income, the multiple comparisons showed that
caregivers with high income had lower scores on the burden
scale, since the statistically signicant difference was between
the lowest income (up to 6000 CY pounds per annum, or
10.500 or US$13.600 in approximate values) and the highest
(over 12000 CY pounds per annum or 21.000 or US$27.200
in approximate values) with the low income group having a
higher burden (P-value 003).
Finally, one-way ANOVA ANOVA was used to examine whether
burden was related to specic stress-coping strategies. Care-
givers with low burden (score below the average) were
examined to see if they used any strategy more than others.
One-way ANOVA ANOVA showed that there were indeed differences
between the strategies (F 2271, P < 001). Multiple
comparisons showed that strategy 5 (assertiveness) was used
least, as seen by the smaller mean (108) and the small
P-value. On the other hand, strategy 1 (positive approach)
was the most often used since it had the largest (215) mean.
Statistically signicant differences in coping were also found
between men and women caregivers, with women using more
strategies like seeking social support (mean 198, P 001
and wishful thinking (mean 192, P 001).
Discussion
Variables related with burden
Patient psychopathology
The primary nding of this study was that the majority of
family caregivers experience high levels of burden and this is
in agreement with other reports that caregiving for a relative
with dementia is stressful and burdensome (Harper & Lund
1990, Aneshensel et al. 1995, Winslow & Carter 1999,
Annestedt et al. 2000, Tornatore & Grant 2002). In
Table 4 Relationship (correlation coefcients) between coping
strategies and burden
Burden
Positive approach 020*
Seeking social support 003
Wishful thinking 016*
Avoidance strategies 006
Assertiveness 013
*Correlation signicant at 005 level.
Table 5 Dimensions of burden as related to
sex (n 172; 40 men, 132 women)
Sex Mean SD SD t P-value
Factor 1: personal strain
Men 2057 965 172 009
Women 2345 770
Factor 2: role strain
Men 1275 603 092 036
Women 1373 590
Factor 3: relational deprivation
Men 847 452 242 002
Women 1044 450
Factor 4: management of care
Men 265 129 116 025
Women 295 177
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2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd 451
answering the rst research question, we identied statisti-
cally signicant positive correlations between total burden
and total frequency of the patients problem behaviour, as
well as the reaction of the caregiver to these problems.
These ndings agree with previous reports that burden and
depression are at the heart of dementia caregiving stress
(e.g. Mittleman et al. 2004). The behaviour most strongly
associated with burden was aggression (r 044), which
contains items such: patient is suspicious, makes accusations
and becomes angry, talks in an aggressive or threatening
manner. Anger, apathy, verbal aggressiveness and similar
behaviours have also been mentioned in other reports
(Cohen-Manseld et al. 1995, Gonzales-Salvador et al.
1999, Annestedt et al. 2000, Robinson et al. 2001, Mourik
2004), while emotional instability and destructive behaviour
were correlated with low levels of caregiver wellbeing, stress
and depression (Croog et al. 2006). It has been suggested
that burden is due to the continuous vigilance that is
imposed to the caregiver because of this behaviour
(Mahoney 2003).
Our results agree with those of others that there is a weak
association between cognitive impairment and the burden of
care for patients with dementia (Coen et al. 2002, Pinquart &
Sorensen 2003). The least burdensome behaviours were
related to the fth factor of the MBPC assessing the
patients memory with items such as: asks the same
question over and over again, mixes up past and present,
loses things, misplaces or hides things. It seems that these
behavioural problems have a far greater impact on the
caregivers life than do cognitive or functional impairment
and they also inuence the decision of relatives to place the
patient in a long-term institution (Cohen et al. 1993).
Burden and place of patient residence
The question of whether institutionalization would relieve
caregivers from stress and reduce burden was rejected in this
study because there was no difference in level of burden
(according to overall BI score) when the patient resided in the
community or a long-term care institution, conrming the
results of other studies (Dellasega 1991, Zarit & Whitlach
1992, Dunkan & Morgan 1994, Almberg et al. 1997, Rudd
et al. 1999, Winslow & Carter 1999, Annestedt et al. 2000,
Keefe & Fanney 2000, Murphy et al. 2000, Bell et al. 2001,
Tornatore & Grant 2002), but disagreeing with the results of
some other researchers (Armstrong 2000, Yaffe et al. 2002).
It has been suggested that the emotional bond in the care-
giver-care recipient dyad is stronger than physical separation
(Chambers et al. 2001) and some caregivers continue to de-
liver direct care because they perceive this as an expression of
love and devotion to patient (Levensque et al. 1999).
Burden and caregiver income, education and sex
Our results and those of others (Sansoni et al. 2004) show
that caregiver levels of education and income are related to
burden. We found that caregivers with higher education and
better remuneration had lower levels of burden, as in other
studies; it seems that these factors may function as buffers to
the stressors of caregiving. It is also possible that these
caregivers have developed more effective skills in managing
the problems of care and their own stress.
Another factor predisposing to burden is sex, since our
results show that women have higher scores than men on the
BI, conrming other reports (Russo & Vitaliano 1995, Schulz
et al. 1995, Almberg et al. 1997, Collins & Jones 1997,
Sparks et al. 1998, Faison et al. 1999, Leon et al. 2000,
Wallsten 2000, Gallicchio et al. 2002, Thomson et al. 2004,
Croog et al. 2006). This nding can be explained in several
ways as elsewhere, in Cypriot society the caring role is
ascribed to women and many women undertake this not by
choice but because it is socially imposed on them. It is also
expected that women will full the difcult task of care
without preparation or knowledge, because it is claimed to
characteristic of their female nature (Connell et al. 2001).
Moreover, the traditional view that caregiving is an obliga-
tion and family responsibility creates increased feelings of
tension and sadness in women, especially spouses (Gallicchio
et al. 2002). An interesting observation when collecting our
data was that in the case of a male caregiver there was always
another member of the family near by to help and support,
and it seems that the availability of another informal helper
might have inuenced the lower levels of burden found in
men. Men and women do not seem to experience burden in
the same way. Women caregivers suffer from social or
Table 6 Sex differences in coping strategies (n 172; 40 men, 132
women)
Caregiver gender Mean SD SD P-value
Positive approach
Male 203 046 062
Female 208 053
Seeking social support
Male 166 067 <001
Female 198 065
Wishful thinking
Male 166 067 003
Female 192 065
Avoidance strategies
Male 159 048 009
Female 175 050
Assertiveness
Male 124 050 091
Female 123 062
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452 2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd
relational deprivation (Adams 2006, Croog et al. 2006),
which other studies report as isolation factor (Annestedt
et al. 2000) or restriction in social life (Almberg et al. 1997).
Burden and psychiatric morbidity of caregivers
In answering the second research question, our results show
that 85 caregivers (4941%) scored above the risk level for
the development of clinical depression (Yee & Schultz
2000). This percentage is similar to that in other studies
(Teri 1994, Covinsky et al. 2003, ORourke et al. 2003).
This nding can be explained by the long duration of
caregiving careers, which range from 1 to 13 years, and the
tensions involved in this role. Our results are consistent with
those of other reports that caregiver burden is positively
correlated with depression (Schulz et al. 1995, Given et al.
1999, Bedard et al. 2000, Clyburn et al. 2000, Pinquart &
Sorensen 2003, Sherwood et al. 2005), although there is a
debate in the literature about whether burden precedes
depressive symptoms (Clyburn et al. 2000, Sherwood et al.
2005).
In the dementia caregiving literature, recipient behaviour
problems are overwhelmingly reported as predicting caregiver
depression (Schulz et al. 1995, Yee & Schultz 2000). We
found that caregiver depression was highly correlated with
problematic behaviour (r 035) leading to the conclusion
that the patients behaviour was predictive of caregiver
depression as well as burden. Examples of this behaviour
include: the patient does not recognize familiar people, is
unable to keep occupied or busy by self and spends long
periods of time inactive. Depressive symptoms in patients,
such as crying, seems depressed or sad were related with
burden less strongly (r 025) compared with the ndings of
Donaldson et al. (1998) (r 040) and Robinson et al.
(2001) (r 045), while in Teris (1997) report caregiver and
patient diagnosis of depression were also statistically signi-
cantly correlated (r 034).
This difference could be explained within the framework of
attribution theory, according to which if the depressive
symptoms of patients with dementia are attributed to the
disease and not to the patient, the experience of caregiving is
probably less stressful (Barrowclough et al. 1994, Tarrier
et al. 2002). Similar ndings were found in Italy, where
caregiver depression was related to personal characteristics
rather than to the patient (Zanetti et al. 1998).
Regarding depression and its relation to sex, a series of
studies using the CES-D provide the evidence that women
caregivers score higher than men (Lutzky & Knight 1994,
Rose-Rego et al. 1998, Schulz &Williamson 1991), and the
correlation of depression with burden conrms the lack of
social support and social transaction as a predisposing factor
of psychiatric morbidity.
Coping strategies used in caring
In answering the third study question, it seems that burden is
related to specic coping strategies. Positive coping had a
negative correlation with caregiver burden (r 020), while
emotional coping was positively related with burden
(r 016). However, there was not an absolute division
between negative and positive strategies, and the use of any
of these may vary during the caregiving career as the care
receivers condition deteriorates (Kneebone & Martin 2003).
At the primary stages of the disease when symptoms are mild,
avoidance and denial may be useful, but strategies of this type
cease to be effective when the symptoms become more intense.
As in other studies (McKee et al. 1997) using the same
instrument, our low-burden caregivers used positive approa-
ches and problem-solving to a greater degree than the more
burdened ones. However, in comparing high and low burden
caregivers there were no statistically signicant differences in
use of coping strategies, leading to the conclusion that there
may be other more robust factors that could moderate the
stress of giving care to a relative with dementia.
High burden caregivers used emotional coping strategies as
Praying and seeking Gods help, hoping for a miracle, day-
dreaming. Other studies found that wishful thinking and
avoidance were related to caregivers depression (Williamson
& Schulz 1993, Fingerman et al. 1996, Powers et al. 2002)
and lower patients survival rates (McClendon et al. 2004)
because these caregivers are less available for the patient,
provided less patient-centred care and contributed unavoid-
ably to the advancement of the patients decline.
Coping strategies and sex
Women in our study reported that they used emotional
coping strategies more than men, explaining to a degree their
high levels of burden. In a similar way, Lutzky and Knight
(1994) claim that high levels of depression are due to the fact
that women use avoidance and escape strategies. However,
beyond the role differences there is a possibility that certain
male personality characteristics function as strong factors
promoting resistance to stress (Thomson et al. 2004). It may
also be possible that men have developed a stronger and
wider repertoire of stress management techniques because of
experiencing many years of paid employment and having a
more positive approach to difculties (Wallsten 2000). It has
also been found that men caregivers tend to use mechanisms
that create a psychological distance from the care receiver so
as to reduce the stress of care (Collins & Jones 1997).
JAN: ORIGINAL RESEARCH Caring for a relative with dementia
2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd 453
Study limitations
The generalizability of this study is limited because of possible
self-selection bias inherent in any study that uses volunteers.
Caregivers who volunteered to participate in this study may
have been more aware of the possible impact of problem
behaviours on caregiver well-being than the average caregiver.
Another limitation is that patients were studied at different
stages of their disease andselectionwas basedondiagnoses and
not clinical examination. Athird limitation might be a possible
response bias (Robinson et al. 2001) because the instruments
use self-reports and the answers could not be veried objec-
tively. The use of structured instruments also did not allowthe
free expression of the caregivers views, and a wealth of
information is lost when using such methods.
Conclusion
Nurses working in the community are in the best position to
assess, prevent or intervene in problems related by stressful
care giving situations. Data from this study provide nurses
with a more comprehensive understanding of the caregiving
role and could contribute to the development of effective
intervention strategies to decreases negative consequences
and highlight the positive dimensions of caregiving. This
would optimize the caregiving environment for both patient
and caregiver and might also delay admission to residential
care for patients with dementia.
More intervention research is also needed to determine how
best to support caregivers in managing problem behaviours at
each stage of the disease and how to deal with their own
feelings of loss. Replication studies with larger randomized
samples, conducted over extended periods of time, are needed
to validate instruments and avoid contradictory evidence.
Acknowledgements
This study was partially funded by the Cyprus Research
Promotion Foundation. We thank the families who partici-
pated.
Author contributions
EP, PS, AK, SP and HT were responsible for the study
conception and design and EP was responsible for the drafting
of the manuscript. EP performed the data collection and data
analysis. SP provided administrative support. PS, AK, SP and
HT made critical revisions to the paper. HT provided
statistical expertise. PS and AK supervised the study.
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