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Aging & Mental Health
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: https://www.tandfonline.com/loi/camh20
The effect of coping on the burden in family carers of persons with dementia
Frøydis Kristine Bruvik, Ingun Dina Ulstein, Anette Hylen Ranhoff & Knut Engedal
To cite this article: Frøydis Kristine Bruvik, Ingun Dina Ulstein, Anette Hylen Ranhoff & Knut Engedal (2013) The effect of coping on the burden in family carers of persons with dementia, Aging
& Mental Health, 17:8, 973-978, DOI: 10.1080/13607863.2013.790928 To link to this article: https://doi.org/10.1080/13607863.2013.790928
Published online: 24 Apr 2013.
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The effect of coping on the burden in family carers of persons with dementia
Frøydis Kristine Bruvika,b,c*, Ingun Dina Ulsteind, Anette Hylen Ranhoffb,eand Knut Engedala,c
aNorwegian Centre for Dementia Research, Oslo, Norway;bKavli Research Center for Ageing and Dementia, Bergen, Norway;
cUniversity of Oslo, Department of Geriatric Medicine, Ullevaal University Hospital, Oslo, Norway;dNorwegian Centre for Dementia Research, Department of Old Age Psychiatry, Oslo University Hospital, Oslo, Norway;eInstitute of Medicine, University of Bergen,
Bergen, Norway
(Received 20 November 2012; final version received 17 March 2013)
Objectives:This study explores the association between coping, measured by the extent of locus of control, and the burden of care on family carers of persons with dementia (PWD).
Method:Two hundred thirty PWD living at home and their family carers were recruited from 20 Norwegian municipali- ties. The carers’ burden was assessed by the Relatives’ Stress Scale (RSS) and coping by the Locus of Control Behaviour Scale. The PWD were assessed by the Neuropsychiatric Inventory (NPI-Q), the Physical Self-Maintenance Scale (PSMS), the Instrumental Activities of Daily Living (IADL) scale, and the Mini Mental Status Examination (MMSE).
Results:Locus of control (LoC) was found to be the most important factor associated with the burden on carers of PWD, even when we had controlled for the PWD variables, such as the NPI-Q score. The LoC and the carer’s use of hours per day to assist the PWD were the only two variables the carers found that affected the extent of the burden. The NPI-Q was the most important variable in the PWD that affected the burden on the carers.
Conclusion:Carers who believe that what happens to them is the consequence of their own actions are likely to be less bur- dened than carers not expecting to have control. This finding gives a possibility to identify carers with a high risk of burden.
Keywords: dementia and cognitive disorders; caregivers; coping; locus of control; stress/burden; behavioural and psychological symptoms of dementia
Introduction
Being the family carer of a person with dementia (PWD) is associated with a high degree of mental, physical, social, and economical burden (Etters, Goodall, &
Harrison,2008; Ulstein, Wyller, & Engedal, 2007b) and such a carer seems to be more burdened than the carer of a person with other serious chronic disorders (Nordtug, Krokstad, Sletvold, & Holen,2011; Papastavrou, Chara- lambous, Tsangari, & Karayiannis, 2012). Behavioural disturbances in the PWD are found to be the most impor- tant risk factors that may cast a burden on the family carer of someone with dementia (Bergvall et al., 2011; Etters et al.,2008). However, some authors have suggested that burden expressed as distress in a carer could possibly affect behaviour in the PWD negatively (Dunkin &
Anderson-Hanley, 1998); if so, behavioural disturbances and burden become a negative self-reinforcing process.
Although the majority of carers of PWD are burdened, some do not experience it and others do not find it so oner- ous (Ulstein et al., 2007b). This raises the question of whether the coping of the carers explain the differences in their experiences of the burden.
‘Coping’ is defined by Lazarus and Folkman (1984) as the cognitive behavioural effort to manage external and internal demands, described as the two main coping strate- gies: problem-focused and emotion-focused. In the litera- ture, the association between active or problem-focused coping strategies and burden on carers of PWD is not clear (McConaghy & Caltabiano, 2005; Papastavrou et al.,
2011; Wright, Lund, Caserta, & Pratt,1991). A review by Kneebone and Martin (2003) concluded, that a combina- tion of acceptance and a problem-solving coping strategy was associated with fewer problems in carers of PWD. A recent review by Li, Cooper, Bradley, Shulman, and Livingston (2012)found that coping based on emotional support and acceptance was associated with lower anxiety and depression (Li et al.,2012).
Another way to measure coping is to study the locus of control (LoC), a concept developed by Rotter (1966)), based on the theory of personality psychology. LoC refers to a person’s perceived control over his or her own behav- iour (Rotter, 1966). Persons with an internal LoC are defined by their belief that what happens to them is the consequence of their own actions. In contrast, those with an external LoC believe such events to be beyond their control (Rotter, 1966). LoC is defined to be associated with self-esteem, neuroticism and self-efficacy in a com- mon core (Judge, Erez, Bono, & Thoresen, 2002). The association between an external LoC and depression is well documented in several studies (Benassi, Sweeney, &
Dufour, 1988; Johnson & Sarason, 1978; Licht-Strunk, van der Windt, van Marwijk, de Haan, & Beekman, 2007). A recent review by Bjørkløf, Engedal, Selbk, Kouwenhoven, and Helvik (2013), which studied the association between coping and depression in older people based on 36 studies, reported high internal LoC (internal control-orientation) to be strong and consistently related to reduced level of depressive symptoms. Only a few
*Corresponding author. Email:[email protected]
Ó2013 Taylor & Francis
Vol. 17, No. 8, 973–978, http://dx.doi.org/10.1080/13607863.2013.790928
earlier studies have focused on the association between LoC and burden and as far as we know there has not been a review of this association.
There is a lack of knowledge about the association between the LoC and the burden on carers of PWD. There- fore, we aimed to explore the association between coping measured by the extent of the LoC and the burden of care on family carers of PWD living in their own homes.
Our hypothesis is that LoC is an important variable associated with burden in carers of PWD.
Methods Study design
This is a cross-sectional study in which we use the base- line data from a randomized controlled trial set-up to examine the effect of a psychosocial intervention pro- gramme for PWD and their family carers.
The participants
The participants were 230 dyads of PWD and their family carers, recruited from 20 municipalities in Norway. They were recruited both from memory clinics, and from home nurse districts by local project co-workers. In two of the dyads, ‘the family carer’ was a close friend. The inclusion criteria: the PWD should have a diagnosis of dementia according to ICD-10 (diagnosis made in a memory clinic or by a dementia team and the PWD’s family doctor), liv- ing in their own homes and have the capacity to give informed written consent to participate in the study, and a score on the Mini Mental State Examination of 15 and above (MMSE) (Folstein, Folstein, & McHugh, 1975).
The inclusion criteria of MMSE15 was chosen because most patients with a score above 15 would probably have the capacity to give consent to participate in the study.
However, if the patients with a higher score on the MMSE than 15 was evaluated to not have the ability to consent, he/she was not included. The ‘capacity to give informed written consent’ was evaluated by local co-workers who knew the PWD well. The local health personnel used a written instruction to evaluate the capacity. The family carers had a minimum score of 5 on the Relative Stress Scale (RSS) (Greene, Smith, Gardiner, & Timbury,1982).
The dyads of participants had to have ‘face-to-face con- tact’ at least once a week. No specific exclusion criteria were defined.
Data collection
The data were collected between October 2009 and May 2011. Trained nurses and occupational therapists (OTs), collected the data after receiving a two-day course of edu- cation and training in how to conduct the interview, per- form the cognitive testing, and use the assessment scales.
To ensure the quality of data collection, we conducted telephone meetings regularly, sent out newsletters, and supervised the nurses and OTs individually during the data collection period.
Assessment of the family carers
The carer’s burden was measured with the RSS (Greene et al., 1982). The scale consists of 15 items each rated from 1 to 4 (1¼not at all, 2¼rarely, 3¼frequently/quite a lot, 4¼always). A score above 23 on the RSS indicates an increased risk of clinically significant psychological dis- tress (Ulstein, Wyller, & Engedal, 2007a). The scale has been translated and adapted for the Norwegian language and culture by one of the authors (KE). Cronbach’s Alfa in the current study is .91. Additionally, the carers completed the Norwegian version of the Locus of Control of Behav- iour (LCB) developed by Craig, Franklin, and Andrews (1984). The scale consists of 17 statements, which the respondent rates from 0 ¼ strongly disagree to 5 ¼ strongly agree. Seven of the items rate the degree of inter- nal locus of control and 10 items rate the degree of external LoC. The items measuring the internal locus of control were reversed before the items were summarized. A higher sum score denotes a strong degree of external locus of con- trol, whereas a lower sum score denotes a more internal LoC. The scale was translated into Norwegian by Holen (Nordtug, Krokstad, & Holen, 2010). Cronbach’s Alfa in the current study was .75. The variable derived from the scale is presented as the ‘LoC’ in this study.
Age, gender, education, and kinship with the PWD were recorded. Carers were asked to estimate the hours they had used to assist or look after the PWD during a typ- ical day in the preceding month.
Assessment of the person with dementia
Cognitive function was assessed by the Mini Mental Sta- tus Examination (Folstein et al., 1975), the Norwegian Revised version (MMSE-NR) (Engedal, Haugen, Gilje, &
Laake,1988). The scale consists of 20 items with a possi- ble score between 0 and 30. A higher score indicates bet- ter cognitive function. No cut-off score was used to define dementia as dementia was diagnosed using the ICD-10 criteria before inclusion. The Norwegian 12-item self- administration version of the Neuropsychiatric Inventory (NPI-Q) (Kaufer et al.,2000) was filled in by the carers.
Twelve psychiatric and behavioural symptoms were assessed and the scores varied between 0 and 36 with a higher score indicating more severe symptoms. Perfor- mance of the Activities of Daily Living (ADL) was assessed by summarizing the Physical Self-Maintenance Scale (PSMS) and the Instrumental Activities of Daily Living scale (IADL), both developed by Lawton and Brody (1969)and translated many years ago into Norwe- gian. The Norwegian version is widely used in both clini- cal work and extensively in Norwegian studies of the elderly (Barca, Engedal, Laks, & Selbaek,2010; Helvik, Engedal, Bjoerkloef, & Selbaek, 2012). The PSMS scale is a six-item scale measuring basic activities such as per- sonal care, feeding, and using the toilet, rated on a 5-point scale, from 1 ¼ ‘perform the activity independently’ to 5¼‘do not perform the activity at all/need full assistance’
with a sum score rating from 6 to 30. The IADL scale assesses the more complex instrumental ADL that are required for independent living, such as housework,
974 F.K. Bruviket al.
shopping, and managing finances. The scale has eight items, and the scoring system is similar to that of the PSMS, with a minimum score of 7 and a maximum of 31.
A higher score indicates poorer performance and more need for assistance.
Ethics
Both the persons with dementia and the family carers received oral and written information about the study and had to give written consent to participate. The study was approved by the Norwegian Regional Committee for Ethics in Medical Research in the Southern Health Region and the Norwegian Data Inspectorate. The participants were informed of the opportunity to withdraw from the project at any time.
Statistics
The statistical analyses were performed with the IBM SPSS 19.0 programme. The distribution of each variable was examined by means of histograms. In the bivariate analyses all the continuous variables describing the char- acteristics of the carers and the PWD were dichotomized based on their mean score (Tables 2and3). The variable
‘hours per day used to assist the PWD’ had a very skewed distribution and was therefore dichotomized by the median score and a log transformation was used in the regression analyses. To analyse the differences of RSS scores and LoC scores between groups of carers and PWD with special characteristics (Tables 2 and3), continuous variables were analysed with a two-sided t-test when nor- mally distributed or by means of the Mann–Whitney U- test when skewed. Adjusted linear regression analyses with backwards stepping were applied to determine varia- bles associated with scores on the RSS (dependent vari- able). We constructed two models. In Model 1 we included age and gender and all the carer variables with a p<0.2 in the bivariate analysis shown inTable 2as inde- pendent variables. In Model 2 we added variables of the PWD with p <0.2 in the bivariate analyses. To control for collinearity we carried out correlation analyses of all possible independent variables, using Pearson’s r when the variable was normally distributed and Spearman rho for variables with the skew distribution. If two variables had a correlation coefficient above 0.6, only one of them was used in the regression analysis.
Results
Characteristics of the family carers and the PWD are shown in Table 1. The male carers were either spouses (64%) or adult children (36%). Among the female carers, 50% were spouses, 41% children, and 9% were grandchil- dren, siblings, or friends. The female carers were younger than the male carers (62.2 years (SD ¼ 11.2) versus 67.9 years (SD¼13.6)p¼.007). Years of education and hours spent caring did not differ between the genders. The spouses of the PWD used more hours per day caring for the PWD compared to non-spouses (6.8 (SD¼5.7) versus
2.8 (SD¼3.3),p <.001), but we found no difference in the performance of the ADL between PWD who lived with their spouses compared to those not living with their spouses (32.3 (SD¼9.4) versus 30 (SD¼9.1,p¼.066)).
The PWD who lived with their spouses were younger than PWD who lived alone or with someone else (75.5 (SD ¼ 6.8) versus 81 (SD¼6.8),p<.001).
Table 2 shows the burden of care, measured by the RSS, andTable 3shows the carers’ LoC scores, both bro- ken down by some characteristics of the carers and the PWD. The correlation analysis of the variables inTables 2 and 3, showed no association over 0.6. The correlation between RSS and LoC was 0.42. A higher score on the RSS, representing more burden, is associated with a higher score on the LoC, which represents a higher external locus of control. Between performance of the ADL by the PWD and ‘hours per day spent caring’ the correlation was 0.38.
The results of the two adjusted linear regression analy- ses with burden on carers (RSS) as the dependent variable are shown inTable 4. The explained variance using carers’
variables only (Model 1) was 25.5%. When controlling for PWD variables (Model 2) the explained variance was 35.9%. In the first model, the LoC and ‘hours per day spent caring’, were the only two significant variables. When we introduced the PWD variables, LoC was still the variable with the highest beta, while the beta of ‘ hours per day spent caring’ decreased. Of the variables describing the PWD, the NPI-Q had the highest beta (.24,p<.001).
Discussion
Our hypothesis that LoC is an important variable associ- ated with burden in carers of PWD, was confirmed. Cop- ing measured as LoC was found to be the most important factor associated with burden on carers of PWD living in their own homes, as it was when we controlled for behav- ioural disturbances measured by the NPI -Q and other PWD variables (Table 4). Carers with a high external LoC, believing they have less control of the stressful Table 1. Characteristics of the 230 carers and the PWD.
Carers
Age, mean (SD) 63.5 (12)
Females n (%) 177 (77)
Years of schooling, mean (SD) 12.7 (3.8)
Spouses n (%) 122 (53)
Hours per day spent caring, median (range 0–20)
3 (20) Locus of control behaviour (LoC) mean
(SD)
37.8 (9) Relative Stress Scale (RSS), mean (SD) 23.6 (11.1) Persons with dementia
Age, mean (SD) 78.4 (7.5)
Females, n (%) 123 (54)
Years of schooling, mean (SD) 10.1 (3.4) Mini Mental State Examination (MMSE),
mean (SD)
21.3 (3.6) Performance of Activities of Daily Living
(ADL) mean (SD)
31.1 (8.6) Neuropsychiatric Inventory total score,
severity (NPI-Q) mean (SD)
9.5 (6)
situation using passive coping strategy with avoiding, were more burdened than carers with a more internal LoC believing they are in control and are using more active coping strategy with problem solving. We have not found any other studies reporting LoC to be the strongest factor associated with burden in carers of PWD, but other studies have found an association between LoC and burden of carers of PWD (Contador, Fernandez-Calvo, Palenzuela, Migueis, & Ramos, 2012; Hayslip, Han, & Anderson, 2008; Talkington-Boyer & Snyder, 1994). Also in the study by Nordtug et al. (2010)the extent of the external LoC correlated with the burden of carers of PWD, but this correlation disappeared when controlling for neuroticism.
In the study by Contador, Fernandez-Calvo, Palenzuela,
Table 3. LoC measured by LoC behaviour scale in the carers broken down by various characteristics of the carers and of the persons with dementia (number).
LoC mean (SD) p-value
Carers’ characteristics
Age64 (114) 31.9 (9.8) .006a
<64 (116) 28.3 (10)
Gender
Male (53) 29.3 (10.2) .492a
Female (174) 30.4 (10.2) Education
13 (99) 27.9 (9.2) .005a
<13 (116) 31.8 (10.5) Spouses of the PWD
Yes (119) 34.3 (9.1) .001a
No (106) 25.6 (9.4)
Hours per day spent caring
<3 (103) 27.8 (9.3) .002b
3 (121) 32.1 (10.6)
Characteristics of PWD
Age79 (116) 29.3 (10.5) .248a
<79 (108) 30.9 (9.5)
Gender
Male (104) 33.0 (9.8) <.001a
Female (123) 27.8 (9.9) MMSE
22 (102) 29.8 (10.4) .693a
<22 (122) 30.3 (9.7) ADL
31 (119) 28.3 (10.7) .009a
>31 (108) 31.8 (9.4) NPI-Q severity
<10 (127) 29.9 (10.1) .742a
10 (100) 30.3 (9.8)
aIndependent samples t-test,bMann–Whitney Test.
Table 2. Burden on the carers as measured by the RSS broken down by various characteristics of the carers and the PWD (number).
RSS mean (SD) p-value
Carers’ characteristics
Age64 (114) 25.5 (19.7) .01a
<64 (116) 21.8 (11.2)
Gender
Male (53) 21.1 (11.3) .056a
Female (177) 24.4 (10.9) Education, years of schooling
13 (102) 22.6 (11.8) .209a
<13 (119) 24.5 (11.5) Spouses to the PWD
Yes (122) 26.4 (10.7) <.001a
No (106) 20.6 (10.7)
Hours per day spent caring
<3 (103) 19.9 (9.9) <.001b
3 (124) 26.6 (11.1)
Locus of control behaviour (LoC)
<31 (111) 19 (9.6) <.001a
31 (116) 27.8 (10.6)
Characteristics of PWD
Age79 (119) 21.6 (10.1) .004a
<79 (111) 25.8 (11.8) Gender
Male (107) 26.3 (11.1) .001a
Female (123) 21.3 (10.6) MMSE
22 (102) 22.6 (10.5) .19a
<22 (128) 24.5 (11.5)
ADL31 (121) 20.6 (11.3) .001a
>31 (109) 26.4 (10.3)
NPI-Q severity
<10 (128) 20.9 (10.2) <.001a
10 (102) 27.1 (11.3)
aIndependent samples t-test,bMann–Whitney Test.
Table 4. Adjusted linear regression analyses with burden, as measured with the RSS, as the dependent variable.
Model 1 Model 2
Beta P Beta p
LoC1 .33 <.001 .28 <.001
Hours per day spent caringlog .30 <.001 .18 .003
NPI-Q2 .24 <.001
ADL3 .19 <.001
Age PWD4 .13 .023
Explained variance (%) R2 25.5 35.9
1Locus of Control,2Neuropsychiatric Inventory total score (Severity),
3Activity of Daily Living;4Persons with Dementia.
Model 1¼carers’ characteristics as independent variables; Model 2¼ characteristics of carers’ and PWD as independent variables.
976 F.K. Bruviket al.
Migueis, and Ramos (2012)self-efficacy and contingency expectancies were found to be the variables that best pre- dicted the burden of carers. The divergence in the result in the different studies may be explained by the understand- ing of LoC, self-esteem, neuroticism, and self-efficacy to be in the common core.
We found that ‘hours per day spent caring’ influenced the carer’s burden, a finding that agrees with results from other studies (Bergvall et al.,2011). However, the influ- ence of this factor weakened when we controlled for char- acteristics of the PWD. This is probably due to the correlation (0.38) between the performance of the ADL and ‘hours per day spent caring’, because impairment in performing the activities of daily living causes the need for daily assistance from the carer. However, the fact that both variables show an effect in Model 2 indicates that several other factors influence the relationship between the two variables, e.g. the kind of tasks with which the PWD need help, the emotional relationship between the carer and the PWD, as well as the provision of formal public health and social care offered to the PWD.
As expected, behavioural disturbances measured by the NPI-Q were associated with the carer’s burden (Bergvall et al., 2011; Machnicki, Allegri, Dillon, Serrano, & Taragano,2009; Ulstein et al.,2007b). In the present study, the participants with dementia were able to perform relatively well and had mild to moderate behav- ioural disturbances. But even so, behavioural disturbances came out as a more important factor associated with the burden on carers than cognitive function as measured by the MMSE and impairment in the performance of the activities of daily living.
In the bivariate as well as in the adjusted analyses, younger age of the PWD was associated with more burden on the carers (Tables2 and4). This finding agrees with that found in other studies and is probably due to the fact that dementia with all its negative consequences is harder for younger couples (PWD and carer) to handle (Van Vliet, de Vugt, Bakker, Koopmans, & Verhey, 2010).
Another explanation can be that the younger PWD in this study were more likely to be living with their spouses compared to the older PWD, who were more often wid- owers. Being a spouse was found to give rise to being a greater burden than not being a spouse, which is in line with the results of earlier studies (Etters et al.,2008).
This study has some limitations. First, we did not study carers with no or low burden (RSS<5), who might have been those with the best coping. Second, by using baseline data from an intervention study, we had limited information about families who could or would not partic- ipate in the intervention.
The strength of this study is the relatively high number of dyads of PWD and carers, and that we used variables from both carers and PWD in the analyses to explore how the LoC influenced the burden felt by carers.
Conclusion
We have found that the LoC of carers of PWD who were living at home strongly affected how they view their
burden, even when we had controlled for characteristics of carers and PWD that are known to be important for the carer’s burden.
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