JAN ORIGINAL RESEARCH

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 PAPASTAVROU E., KALOKERINOU A., PAPACOSTAS S.S., TSANGARI H. &
Lecturer S O U R T Z I P . ( 2 0 0 7 ) Caring for a relative with dementia: family caregiver burden.
School of Health Sciences, Department of Journal of Advanced Nursing 58(5), 446457
Nursing, Cyprus University of Technology,
doi: 10.1111/j.1365-2648.2007.04250.x
Cyprus

Athena Kalokerinou PhD RN Abstract

Assistant Professor Title. Caring for a relative with dementia: family caregiver burden
School of Nursing, University of Athens, Aim. This paper is a report of part of a study to investigate the burden experienced
Athens, Greece 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
Savvas S. Papacostas MD the care giving stressors.
Senior Consultant Neurologist
Background. The cost of caring for people with dementia is enormous, both mon-
Cyprus Institute of Neurology and Genetics,
etary and psychological. Partners, relatives and friends who take care of patients
Cyprus and Adjunct Professor of Neurology,
University of Rochester, New York, USA experience emotional, physical and financial stress, and care giving demands are
central to decisions on patient institutionalization.
Haritini Tsangari PhD Method. A volunteer sample of 172 caregiver/care recipient dyads participated in the
Assistant Professor of Statistics study in Cyprus in 20042005. All patients were suffering from probable Alzheimers
Intercollege, Cyprus type dementia and were recruited from neurology clinics. Data were collected using
the Memory and Behaviour Problem Checklist, Burden Interview, Center for
Panagiota Sourtzi PhD RN
Epidemiological Studies-Depression scale and Ways of Coping Questionnaire.
Associate Professor
Findings. The results showed that 6802% of caregivers were highly burdened and
School of Nursing, University of Athens,
Athens, Greece 65% exhibited depressive symptoms. Burden was related to patient psychopathology
and caregiver sex, income and level of education. There was no statistically signifi-
Correspondence to Evridiki Papastavrou: cant difference in level of burden or depression when patients lived in the community
e-mail: [email protected] 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, specific 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

source of caregiver burden and stress, which in turn is a

Introduction
major determinant of institutionalization for dementia
Caregiver burden has been defined as a negative reaction to sufferers (Donaldson et al. 1998). There is also evidence that
the impact of providing care on caregivers social, occupa- chronic stress exposure in caregivers of patients with
tional and personal roles (Given et al. 2001). It is also well- dementia is associated with physical health decline, psychi-
established that the symptoms of dementia are an important atric morbidity and poor quality of life (Rose-Rego et al.

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JAN: ORIGINAL RESEARCH Caring for a relative with dementia

1998, Clyburn et al. 2000, Bell et al. 2001, Connell et al. of the patient to cope with the daily living activities
2001). All these factors may result in poor standards of care, (Schumacher et al. 1993, Faison et al. 1999, Clyburn et al.
neglect or even abuse of the patient, and indicate the need for 2000, Gallant & Connell 2003). Burden has also been related
patient institutionalization. to certain characteristics of the relative, such as age and the
To reduce stress and strengthen partnerships, nurses need presence of illness (Connell et al. 2001), and burden may be
to understand better individual carers experiences and be an important criterion for moving the patient into institu-
more in tune with their worries and concerns, so that tional care (Yaffe et al. 2002). Recent meta-analyses
appropriate care and support can be provided. The recogni- (Pinquart & Sorensen 2003) support the fact that physical
tion of high levels of caregiver morbidity demands a holistic dependency is positively related with caregiver depression,
approach and nurses needs to be more responsive to the needs but in the case of patients with dementia this problem is of
of both carers and care-recipients rather than focussing on the secondary importance, given the priority of behavioural
patient alone (Cheung & Hocking 2004). disorders like aggressiveness, wandering and disorientation.
More recent studies report a negative correlation between
physical dependency and burden (Sherwood et al. 2005). It is
Background
possible that in cases when the need for physical care is
apparent, the extended family tends to offer more support to
Theoretical framework
the primary caregiver (Given et al. 1999).
The burden of dementia care giving was explored within the Research on patients behavioural problems is more clear
framework of the general stress theories. Like stress, and the results are more consistent in relation to the
caregiver burden is hypothesized to be an acute reaction to correlation of problematic behaviour with burden (Baumgar-
providing care that arises as new care demands are den et al. 1992, Schulz et al. 1995, Donaldson et al. 1998,
introduced or existing care demands intensify (Given et al. Faison et al. 1999, Robinson et al. 2001, Gallicchio et al.
1999). When care demands become increasingly challenging, 2002, Hooker et al. 2002, Rymer et al. 2002, Andrieu et al.
caregivers respond by employing strategies to meet care 2003, Covinsky et al. 2003). These problems have also been
demands and decrease the burden of providing care (Sher- described as a major risk factor in moving the patient into
wood et al. 2005). Caregivers who are unable to adapt or institutional care (Acton 1997, Chou 1999, Armstrong 2000,
modify their strategies to meet care demands experience Clyburn et al. 2000, Bell et al. 2001, Hebert et al. 2001, Rees
burden (Given et al. 1999). Pearlin et al. (1990) have et al. 2001).
incorporated the problematic areas of care into a model of The relationship between cognitive impairment and burden
care for patients with Alzheimers disease, which is a specific is less clear, either giving a positive correlation (Matsuda
application of the stress-coping model of Lazarus and 1995, Nagatomo et al. 1999) or no direct relation (Gonzales-
Folkman (1984). They claim that care giving stress is a Salvador et al. 1999, Coen et al. 2002).
multidimensional phenomenon that consists of four major
domains: the framework of care (including the characteristics
Consequences of burden
of the caregiver, type of the dyadic relationship and availab-
ility of social support); the stressful situations of care giving, Family caregivers of patients with dementia experience
which may be primary (such as the problematic behaviour of increased physical and psychological morbidity (Clyburn
the patient) or secondary (such as other commitments of the et al. 2000, Bell et al. 2001, Connell et al. 2001), and may
caregiver); factors (such as the coping strategies and man- develop hyperlipidaemia, hyperglycaemia (Vitaliano et al.
agement of care) that moderate the perception of stress and 1995, Davies 1996) and insufficiency of the cellular immune
consequences of care giving for the general wellbeing of the system (Kiecolt-Glaser et al. 1995, Davies 1996, Irwin et al.
caregiver. 1997, Vendhara et al. 1999, Mills et al. 2004, Thomson
et al. 2004). A consistent finding is that depression is a
major consequence of care (Malone-Beach & Zarit 1995,
Variables related with caregiver burden in dementia
Teri 1997, Clyburn et al. 2000, Marriot et al. 2000,
Many researchers have assessed and described in different Gallicchio et al. 2002) which remains even after the
ways the individual characteristics of both the patient and institutionalization or death of the patient (Bass et al.
caregiver that predispose caregivers to burden. Regarding the 1991, Zarit & Whitlach 1992, Bodnar & Kiecolt-Glaser
patient, studies have found a statistically significant correla- 1994, Aneshensel et al. 1995, Wright et al. 1999, Gallagher-
tion between burden and the functional condition or ability Thompson et al. 2001).

 2007 The Authors. Journal compilation  2007 Blackwell Publishing Ltd 447
E. Papastavrou et al.

The diagnosis of a relative with dementia leads to many

Design
losses, and caregivers experience grief which is very similar to
that of death (Rudd et al. 1999) or even worse. This is This was a cross-sectional, descriptive study in which several
described as disenfranchised grief (Doka 1989) because the methods were used for the selection and analysis of data. The
loss cannot be recognized openly or publicly and the relative data were collected in 20042005 in Cyprus.
is not accepted in expressing grief and is socially supported,
as happens with real death.
Participants

Families were recruited from neurology clinics and inter-

Gender differences in the experience of burden
viewed at their homes. A total of 200 families were
Caregiver sex is another frequently mentioned variable in the approached, and 172 patient-primary caregiver dyads agreed
literature. It has been observed that women are more likely to to participate. The refusal of 28 families is indicative of the
experience social restrictions because of their caring role social prejudice towards the disease, which is considered a
(Stoller 1990, Kramer & Kipnis 1995, Montgomery 1996), stigma in this society.
and they experience higher levels of burden when compared Of the 172 patients with the diagnosis of probable
with men caregivers (Barusch & Spaid 1996, Wallsten 2000, Alzheimers disease, 130 were community residents and 42
Gallicchio et al. 2002, Thomson et al. 2004). The greatest were selected from long-term institutions to answer the
proportion of caregivers (73%) of patients with dementia research question about burden of care and negative conse-
consists of women (Ory et al. 1999). and this increases their quences when the patient is institutionalized. Care-recipients
vulnerability to depression (Yee & Schultz 2000). High levels ages ranged from 52 to 97 years (mean 75, SD 793).
of stress, tension (Collins & Jones 1997, Gallicchio et al. 2002), The inclusion criteria for caregivers were to have the most
paranoid symptoms (Parks & Pilisuk 1991), perception of ill frequent contact with the patient and the greatest responsi-
health (Collins & Jones 1997) and lower levels of quality of life bility for care for at least 1 year, and not to have psychiatric
(Collins & Jones 1997, Rose-Rego et al. 1998) are also found. illness or mental disability. The caregiver sample of consisted
Sex differences have been reported in the ways people use of 40 men and 132 women. The relationship of the patient to
to cope with the several stressors of caregiving. Women seem the caregiver was that of a partner, daughter, son or other
to have lower levels of mastery (Rose-Rego et al. 1998) and relative, such as a sister or a daughter in law.
use less effective coping strategies (Thoits 1995), while men
use mostly problem-solving approaches (Thomson et al.
Data collection
2004). Some authors explain sex differences by suggesting
that men receive more informal support than women (Allen Data were collected using four instruments, which were
et al. 1996, Ingersoll-Dayton et al. 1996). 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
The study
depressive symptoms and strategies used by caregivers to
cope with the stressors of care.
Aim

The aims of this study were to investigate the burden of Cognitive and behavioural status of the patient
giving care to a relative with dementia, consequences of care Care recipients cognitive and behaviour status was assessed
for the mental health of the primary caregiver and family using the Memory and Behaviour Problem Checklist 1990 R
strategies for coping with the stress of care. (MBPC) (Zarit 1990). The purpose of the MBPC is to
The specific research questions addressed were determine how frequently a patient with dementia engages in
What is the relationship of caregiver burden with the problematic behaviours and which problems are especially
behaviour of the patient and the reaction of the caregiver upsetting for family members. There are two parts to the
to the patients problems? MBPC, and it consists of 26 items. The first part determines
Is there a relationship between the caregiver burden and the the frequency with which common problems have occurred,
caregivers depressive symptoms? and the care recipients cognitive and behaviour status is
Is caregiver burden related to specific coping strategies? scored on a Likert scale of 04 (0, never happens; 4, happens
Does institutionalization of the patient reduce caregiver every day). The timeframe used was 1 week and this was
burden? selected to minimize the recall task for informants. The

448  2007 The Authors. Journal compilation  2007 Blackwell Publishing Ltd
JAN: ORIGINAL RESEARCH Caring for a relative with dementia

second part of the MBPC obtains the informants subjective explained 323% of the variation (Karademas 1998). These
appraisal of each problem and measures the degree to which were positive approach, seeking social support, wishful
behaviours bothered or upset the caregiver. thinking, avoidance strategies and assertiveness. In the pre-
In the current study, reliability was measured using sent study, Cronbachs alpha for the overall scale was 085.
Cronbachs alpha and was found to be high, with a 085
for frequency of problem behaviours and caregiver reaction
Ethical considerations
to problem behaviours. Factor analysis was also performed to
group the 26 items of the MBPC in a small number of The study was approved by the research committee of the
important factors. The analysis gave seven factors, which Institute of Neurology and Genetics and the Ministry of
explained 627% of the variation (see Papastavrou 2005, Health. All caregivers received an information sheet outlining
Papastavrou et al. 2006 for more details of the psychometric the purpose of the study, names of the research centres
analysis). undertaking the research and a statement that responses were
anonymous. Contact details of the researchers were also
Caregiver burden given to allow participants to gain further details about the
Caregiver burden was assessed using the Burden Interview study. Signed consent was obtained.
(BI), which was designed to assess the stress experienced by
family caregivers of older people and disabled persons.
Data analysis
Caregivers are asked to respond to a series of 22 questions
about the impact of the patients disabilities on their life. In The data were analysed using independent samples t-tests,
the current study, Cronbachs alpha was found to be 093. correlation analysis and one-way ANOVA followed by
Factor analysis gave four factors that explained 6392% of post hoc adjustments for multiple comparisons.
the variation. These factors were taken as the dimension of
burden and were: personal strain, role strain, relational
Results
deprivation and management of care (Papastavrou 2005,
Papastavrou et al. 2006). Most caregivers were daughters (483%), followed husbands
or wives (413%), sons (58%) and others (41%). The mean
Center for Epidemiological Studies Depression Scale age of caregivers was 5680 years and that of care recipients
The Center for Epidemiological Studies Depression Scale 7552 years, with standard deviations 1338 and 793 years,
(CES-D) is a 20-item scale used to assess the overall level of respectively. Care recipients in institutions had a mean age of
depression experienced in the past week (Raddloff 1977). 7976 years and those in the community had a mean age of
Psychometric properties have been shown to be strong in 7450 years.
many studies, including the translated Greek version (Madi- Table 1 gives summary statistics for the main study
anos et al. 1992). Cronbachs a in the present study was 069. variables for caregivers of patients in the community and in
institutions. The variables are formed as overall indices from
Ways of Coping Questionnaire the series of questions for each. Since the data are approxi-
The Greek translation consists of 38 items with a Cronbachs mately normally distributed, means and standard deviations
alpha of 073. Factor analysis produced five factors that are reported. In the same table, we also show the results from

Table 1 Summary statistics and

Variable Place of residence Mean SD t P-value
independent sample t-tests for the main
study variables (n 172; 130 in Burden (BI) Home 5029 1735 155 012
community, 42 in institutions) 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.

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E. Papastavrou et al.

the independent samples t-tests, which identify significant were highly statistically significant, with P-values <001. If
differences in these variables between the community and we consider the seven categories of MBPC separately, we can
institution participants. The P-values are all very high, see that each category is positively related to burden. The
indicating that there are no statistically significant differences highest correlation coefficient is 044 for factor 2, which
between the two groups for any of the variables. Therefore, means that the most stressful category of problems is the one
regarding the overall level of burden, there were no statisti- containing questions related with the aggressive behaviour of
cally significant differences when the patient was placed in a the patient. These results are demonstrated in Table 3. In the
long-term care setting compared with living in the commu- same table, we can also see that, regarding patient behaviour
nity (P 012). However, when burden was represented by problems (which are positively correlated with depression,
its four factors there were some differences. There was a previously noted), the kind of behaviour causing most
difference in relational deprivation, which seemed to be caregiver depressive symptoms is related to apathy (r 029).
higher when the patient lived at home (mean 1040 for The relationship between coping strategies and burden is
community and mean 869 for institution). It is also shown in Table 4. The only statistically significant correla-
interesting that when the patient lived in a long-term care tions are between burden and positive coping strategies
setting, factor 4 of the BI (management of care) was higher (negative correlation, r 020), and between burden and
(community mean 266, institution mean 354). These wishful thinking (positive correlation, r 016). The first,
differences are presented in Table 2. negative correlation means that when caregivers use specific
Statistically significant correlations were found between strategies such as problem-solving and seeking social support,
the main study variables using Pearson correlation coeffi- the level of burden is lower. The positive correlation between
cients. Burden had a positive relation with overall MBPC burden and wishful thinking confirms the Lazarus and
score (r 054), overall depressive symptoms (r 057) and Folkman (1984) theory that emotionally focused coping
caregiver overall reaction to the patients behavioural strategies are positively related to stress. Finally, there is a
problems (r 063). Moreover, MBPC was positively corre- statistically significant positive correlation between depres-
lated with Ways of Coping Questionnaire (WCQ) (r 089) sion and three of the four factors of burden, i.e. personal
and depression (r 035), and reaction was positively strain, role strain and relational deprivation, with coefficients
correlated with depression (r 044). All the correlations 056, 051 and 047, respectively.

Table 2 Burden factors in relation to

Place of residence Mean SD t P-value
patients place of residence (n 172; 130
Factor 1: personal strain in community, 42 in institutions)
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 coefficients of burden and depression with the factors of the Memory and Behaviour Problem Checklist (MBPC)

Factor 2: Factor 3: Factor 4: Factor 5: Factor 6: Factor 7:

Factor 1: aggressive dangerous attachment memory communication depressive
inactivity behaviour behaviour behaviour problems problems symptoms

Burden 037* 044* 036* 035* 022* 023* 025*

Depression 029* 026* 022* 024* 012 014 019

*Correlation significant at 001 level.


Correlation significant at 005 level.

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JAN: ORIGINAL RESEARCH Caring for a relative with dementia

Table 4 Relationship (correlation coefficients) between coping education, where elementary school graduates had higher
strategies and burden burden compared with MSc/PhD holders (P 0046). With
Burden regard to income, the multiple comparisons showed that
caregivers with high income had lower scores on the burden
Positive approach 020*
scale, since the statistically significant difference was between
Seeking social support 003
Wishful thinking 016* the lowest income (up to 6000 CY pounds per annum, or
Avoidance strategies 006 10.500 or US$13.600 in approximate values) and the highest
Assertiveness 013 (over 12000 CY pounds per annum or 21.000 or US$27.200
*Correlation significant at 005 level.
in approximate values) with the low income group having a
higher burden (P-value 003).
Sex differences were also examined. Independent samples Finally, one-way ANOVA was used to examine whether
t-test analysis showed that burden was different between men burden was related to specific stress-coping strategies. Care-
and women (P-value 0048). More specifically, women had givers with low burden (score below the average) were
a higher burden score than men (5057 and 4445 respect- examined to see if they used any strategy more than others.
ively, with standard deviations 1638 and 1889). If we One-way ANOVA showed that there were indeed differences
examine the factors of burden and their relation to sex, as between the strategies (F 2271, P < 001). Multiple
shown in Table 5, we can see that factor 3 relational comparisons showed that strategy 5 (assertiveness) was used
deprivation is the only one that statistically significantly least, as seen by the smaller mean (108) and the small
affects gender differently (P-value 002), affecting women P-value. On the other hand, strategy 1 (positive approach)
more than men. Personal strain also showed a marginal was the most often used since it had the largest (215) mean.
difference for women (P-value 009). Sex differences were Statistically significant differences in coping were also found
also observed in the coping strategies used, where the results between men and women caregivers, with women using more
showed that women use seeking social support strategies like seeking social support (mean 198, P 001
(P-value < 001) and wishful thinking more than men and wishful thinking (mean 192, P 001).
(P-value 003). Table 6 gives all the sex differences in
coping strategies. Regarding depression, again there was
Discussion
statistical difference (P-value 0011), with women having
higher depression scores than men (1954 and 1625,
Variables related with burden
respectively, with standard deviations of 743 and 575).
An examination of burden in relation to other independent Patient psychopathology
variables (one-way ANOVA ) demonstrated that there were The primary finding of this study was that the majority of
differences at the level of burden according to level of education family caregivers experience high levels of burden and this is
(F 369, P 001) and level of income (F 32, P 002) in agreement with other reports that caregiving for a relative
of the caregiver. With regard to education, post hoc multiple with dementia is stressful and burdensome (Harper & Lund
comparisons (Bonferroni) showed that the statistically signi- 1990, Aneshensel et al. 1995, Winslow & Carter 1999,
ficant difference was between the lowest and highest levels of Annestedt et al. 2000, Tornatore & Grant 2002). In

Table 5 Dimensions of burden as related to

Sex Mean SD t P-value
sex (n 172; 40 men, 132 women)
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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E. Papastavrou et al.

Table 6 Sex differences in coping strategies (n 172; 40 men, 132 Burden and place of patient residence
women) The question of whether institutionalization would relieve
Caregiver gender Mean SD P-value caregivers from stress and reduce burden was rejected in this
study because there was no difference in level of burden
Positive approach
(according to overall BI score) when the patient resided in the
Male 203 046 062
Female 208 053 community or a long-term care institution, confirming the
Seeking social support results of other studies (Dellasega 1991, Zarit & Whitlach
Male 166 067 <001 1992, Dunkan & Morgan 1994, Almberg et al. 1997, Rudd
Female 198 065 et al. 1999, Winslow & Carter 1999, Annestedt et al. 2000,
Wishful thinking
Keefe & Fanney 2000, Murphy et al. 2000, Bell et al. 2001,
Male 166 067 003
Female 192 065
Tornatore & Grant 2002), but disagreeing with the results of
Avoidance strategies some other researchers (Armstrong 2000, Yaffe et al. 2002).
Male 159 048 009 It has been suggested that the emotional bond in the care-
Female 175 050 giver-care recipient dyad is stronger than physical separation
Assertiveness (Chambers et al. 2001) and some caregivers continue to de-
Male 124 050 091
liver direct care because they perceive this as an expression of
Female 123 062
love and devotion to patient (Levensque et al. 1999).

answering the first research question, we identified statisti- Burden and caregiver income, education and sex
cally significant positive correlations between total burden Our results and those of others (Sansoni et al. 2004) show
and total frequency of the patients problem behaviour, as that caregiver levels of education and income are related to
well as the reaction of the caregiver to these problems. burden. We found that caregivers with higher education and
These findings agree with previous reports that burden and better remuneration had lower levels of burden, as in other
depression are at the heart of dementia caregiving stress studies; it seems that these factors may function as buffers to
(e.g. Mittleman et al. 2004). The behaviour most strongly the stressors of caregiving. It is also possible that these
associated with burden was aggression (r 044), which caregivers have developed more effective skills in managing
contains items such: patient is suspicious, makes accusations the problems of care and their own stress.
and becomes angry, talks in an aggressive or threatening Another factor predisposing to burden is sex, since our
manner. Anger, apathy, verbal aggressiveness and similar results show that women have higher scores than men on the
behaviours have also been mentioned in other reports BI, confirming other reports (Russo & Vitaliano 1995, Schulz
(Cohen-Mansfield et al. 1995, Gonzales-Salvador et al. et al. 1995, Almberg et al. 1997, Collins & Jones 1997,
1999, Annestedt et al. 2000, Robinson et al. 2001, Mourik Sparks et al. 1998, Faison et al. 1999, Leon et al. 2000,
2004), while emotional instability and destructive behaviour Wallsten 2000, Gallicchio et al. 2002, Thomson et al. 2004,
were correlated with low levels of caregiver wellbeing, stress Croog et al. 2006). This finding can be explained in several
and depression (Croog et al. 2006). It has been suggested ways as elsewhere, in Cypriot society the caring role is
that burden is due to the continuous vigilance that is ascribed to women and many women undertake this not by
imposed to the caregiver because of this behaviour choice but because it is socially imposed on them. It is also
(Mahoney 2003). expected that women will fulfil the difficult task of care
Our results agree with those of others that there is a weak without preparation or knowledge, because it is claimed to
association between cognitive impairment and the burden of characteristic of their female nature (Connell et al. 2001).
care for patients with dementia (Coen et al. 2002, Pinquart & Moreover, the traditional view that caregiving is an obliga-
Sorensen 2003). The least burdensome behaviours were tion and family responsibility creates increased feelings of
related to the fifth factor of the MBPC assessing the tension and sadness in women, especially spouses (Gallicchio
patients memory with items such as: asks the same et al. 2002). An interesting observation when collecting our
question over and over again, mixes up past and present, data was that in the case of a male caregiver there was always
loses things, misplaces or hides things. It seems that these another member of the family near by to help and support,
behavioural problems have a far greater impact on the and it seems that the availability of another informal helper
caregivers life than do cognitive or functional impairment might have influenced the lower levels of burden found in
and they also influence the decision of relatives to place the men. Men and women do not seem to experience burden in
patient in a long-term institution (Cohen et al. 1993). the same way. Women caregivers suffer from social or

452  2007 The Authors. Journal compilation  2007 Blackwell Publishing Ltd
JAN: ORIGINAL RESEARCH Caring for a relative with dementia

relational deprivation (Adams 2006, Croog et al. 2006), social support and social transaction as a predisposing factor
which other studies report as isolation factor (Annestedt of psychiatric morbidity.
et al. 2000) or restriction in social life (Almberg et al. 1997).

Coping strategies used in caring

Burden and psychiatric morbidity of caregivers
In answering the third study question, it seems that burden is
In answering the second research question, our results show related to specific coping strategies. Positive coping had a
that 85 caregivers (4941%) scored above the risk level for negative correlation with caregiver burden (r 020), while
the development of clinical depression (Yee & Schultz emotional coping was positively related with burden
2000). This percentage is similar to that in other studies (r 016). However, there was not an absolute division
(Teri 1994, Covinsky et al. 2003, ORourke et al. 2003). between negative and positive strategies, and the use of any
This finding can be explained by the long duration of of these may vary during the caregiving career as the care
caregiving careers, which range from 1 to 13 years, and the receivers condition deteriorates (Kneebone & Martin 2003).
tensions involved in this role. Our results are consistent with At the primary stages of the disease when symptoms are mild,
those of other reports that caregiver burden is positively avoidance and denial may be useful, but strategies of this type
correlated with depression (Schulz et al. 1995, Given et al. cease to be effective when the symptoms become more intense.
1999, Bedard et al. 2000, Clyburn et al. 2000, Pinquart & As in other studies (McKee et al. 1997) using the same
Sorensen 2003, Sherwood et al. 2005), although there is a instrument, our low-burden caregivers used positive approa-
debate in the literature about whether burden precedes ches and problem-solving to a greater degree than the more
depressive symptoms (Clyburn et al. 2000, Sherwood et al. burdened ones. However, in comparing high and low burden
2005). caregivers there were no statistically significant differences in
In the dementia caregiving literature, recipient behaviour use of coping strategies, leading to the conclusion that there
problems are overwhelmingly reported as predicting caregiver may be other more robust factors that could moderate the
depression (Schulz et al. 1995, Yee & Schultz 2000). We stress of giving care to a relative with dementia.
found that caregiver depression was highly correlated with High burden caregivers used emotional coping strategies as
problematic behaviour (r 035) leading to the conclusion Praying and seeking Gods help, hoping for a miracle, day-
that the patients behaviour was predictive of caregiver dreaming. Other studies found that wishful thinking and
depression as well as burden. Examples of this behaviour avoidance were related to caregivers depression (Williamson
include: the patient does not recognize familiar people, is & Schulz 1993, Fingerman et al. 1996, Powers et al. 2002)
unable to keep occupied or busy by self and spends long and lower patients survival rates (McClendon et al. 2004)
periods of time inactive. Depressive symptoms in patients, because these caregivers are less available for the patient,
such as crying, seems depressed or sad were related with provided less patient-centred care and contributed unavoid-
burden less strongly (r 025) compared with the findings of ably to the advancement of the patients decline.
Donaldson et al. (1998) (r 040) and Robinson et al.
(2001) (r 045), while in Teris (1997) report caregiver and Coping strategies and sex
patient diagnosis of depression were also statistically signi- Women in our study reported that they used emotional
ficantly correlated (r 034). coping strategies more than men, explaining to a degree their
This difference could be explained within the framework of high levels of burden. In a similar way, Lutzky and Knight
attribution theory, according to which if the depressive (1994) claim that high levels of depression are due to the fact
symptoms of patients with dementia are attributed to the that women use avoidance and escape strategies. However,
disease and not to the patient, the experience of caregiving is beyond the role differences there is a possibility that certain
probably less stressful (Barrowclough et al. 1994, Tarrier male personality characteristics function as strong factors
et al. 2002). Similar findings were found in Italy, where promoting resistance to stress (Thomson et al. 2004). It may
caregiver depression was related to personal characteristics also be possible that men have developed a stronger and
rather than to the patient (Zanetti et al. 1998). wider repertoire of stress management techniques because of
Regarding depression and its relation to sex, a series of experiencing many years of paid employment and having a
studies using the CES-D provide the evidence that women more positive approach to difficulties (Wallsten 2000). It has
caregivers score higher than men (Lutzky & Knight 1994, also been found that men caregivers tend to use mechanisms
Rose-Rego et al. 1998, Schulz &Williamson 1991), and the that create a psychological distance from the care receiver so
correlation of depression with burden confirms the lack of as to reduce the stress of care (Collins & Jones 1997).

 2007 The Authors. Journal compilation  2007 Blackwell Publishing Ltd 453
E. Papastavrou et al.

role and could contribute to the development of effective

What is already known about this topic intervention strategies to decreases negative consequences
Families play an important role in the protection and and highlight the positive dimensions of caregiving. This
care of patients with dementia and are a critical re- would optimize the caregiving environment for both patient
source for healthcare systems. and caregiver and might also delay admission to residential
Family caregivers of patients with dementia experience care for patients with dementia.
burden and increased physical and psychiatric morbid- More intervention research is also needed to determine how
ity, which remains even after institutionalization or best to support caregivers in managing problem behaviours at
death of the patient. each stage of the disease and how to deal with their own
Burden is correlated with the characteristics of the feelings of loss. Replication studies with larger randomized
caregiver and also with the behavioural, cognitive and samples, conducted over extended periods of time, are needed
functional impairment of the patient. to validate instruments and avoid contradictory evidence.

What this paper adds Acknowledgements

Women caregivers had higher scores for burden and This study was partially funded by the Cyprus Research
depression and suffered from social or relational Promotion Foundation. We thank the families who partici-
deprivation. pated.
Patients behavioural problems had a far greater impact
on caregivers lives than cognitive or functional
Author contributions
impairment, and influenced the decision of relatives to
place the patients in long-term residential care. EP, PS, AK, SP and HT were responsible for the study
Understanding caregivers experiences and coping conception and design and EP was responsible for the drafting
reactions will assist healthcare workers, and especially of the manuscript. EP performed the data collection and data
nurses, to develop strategies to reduce caregiver burden analysis. SP provided administrative support. PS, AK, SP and
and promote better coping with care-giving difficulties. HT made critical revisions to the paper. HT provided
statistical expertise. PS and AK supervised the study.

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