Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia.

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Burden of care, social support, and sense of coherence in elderly caregivers living with individuals with symptoms of dementia

Dementia 0(0) 1–14 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214563319 dem.sagepub.com

Kari Stensletten Faculty of Health and Social Science, Bergen University College, Bergen, Norway; Department of Public Health and Primary Health, University of Bergen, Bergen, Norway

Frøydis Bruvik Kavli Centre, Haraldsplass Deaconess Hospital, Bergen, Norway; Haraldsplass Deaconess University College, Bergen, Norway; Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway

Birgitte Espehaug Centre for Evidence-Based Practice, Bergen University College, Bergen, Norway

Jorunn Drageset Faculty of Health and Social Science, Bergen University College, Bergen, Norway; Department of Public Health and Primary Health, University of Bergen, Bergen, Norway

Abstract Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver’s sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, 65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for Corresponding author: Kari Stensletten, Faculty of Health and Social Science, Bergen University College, Bergen, Norway. Email: [email protected]

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the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia. Keywords dementia, burden of care, caregivers, social support, sense of coherence

Introduction Providing informal care to an older person may lead to poor mental health (Butterworth, Pymont, Rodgers, Windsor, & Anstey, 2010). Caring for a home-dwelling family member with dementia has been described as a situation of ‘‘enduring stress and frustration’’ (Butcher, Holkup, & Buckwalter, 2001). The term caregiver burden is often used to describe this phenomenon (Etters, Goodall, & Harrison, 2008) and distinguishes between objective and subjective burden (Pearlin, Mullan, Semple, & Skaff, 1990). Objective burden refers to the primary stressors linked to the dependence and needs of assistance of the person with dementia. The subjective burden refers to secondary stressors as a mental reaction, such as distress, depression, anxiety, irritation, or feelings of exhaustion (Pearlin et al., 1990). Family members caring for people with dementia living in the community are reported to have a particularly high risk of developing stress-related symptoms (Bruvik, Ulstein, Ranhoff, & Engedal, 2013; Ulstein, 2007) and depression (Lavela & Ather, 2010; Papastavrou, Kalokerinou, Papacostas, Tsangari, & Sourtzi, 2007; Schoenmakers, Buntinx, & Delepeleire, 2010). They have more depressive symptoms than those caring for a family member with a different chronic condition (Nordtug, Krokstad, & Holen, 2011; Schoenmakers et al., 2010). However, even though these negative consequences of informal caregiving are well documented, some caregivers have reported gains from the experience of caring for a chronically ill family member with dementia. One study (Schulz et al., 2007) suggested that the beneficial outcomes of caregiving may be due to the caregivers’ compassion for their partners. The informal caregivers of people with dementia have reported improvement in relationships within the family (Netto, Jenny, & Philip, 2009), and support from daughters was found to facilitate coping among male caregivers (Pretorius, Walker, & Heyns, 2009). It has also been reported that services providing tangible relief from the burden of caregiving may lead to a perception of reduced burden (McConaghy & Caltabiano, 2005); this stresses the importance of providing individually tailored formal caregiving. Research has documented that informal caregiving may lead to both negative and positive outcomes for the caregiver (Beach, Schulz, Yee, & Jackson, 2000; Kinney & Stephens, 1989; Netto et al., 2009; Sanders, 2005). Social support refers to the qualitative aspect described as perceived social support, such as the availability of relationships with significant others (Sarason, Sarason, & Pierce, 1990). Robert Weiss (1974) identified and described six categories of relational provisions: attachment, social integration, opportunity for nurturance, reassurance of worth, reliable



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alliances, and guidance. Each provision is associated with a specific type of relationship, depending on age, life stage, and environmental circumstances (Weiss, 1974). Several studies have shown the need for specific relational provisions, based on Weiss’ concept of social support among older people (Cutrona & Russell, 1987; Drageset, Eide, & Ranhoff, 2013; Mancini & Blieszner, 1992). Cutrona and Russell (1987) reported that social support may benefit the health of older people in the context of stressful life experiences. Mancini and Blieszner (1992) found that social provisions were important for people older than 65 years and were met by close relationships with significant others such as family and friends. Drageset, Eide, and Ranhoff (2013) reported that the social support subdimension attachment was correlated with less anxiety among nursing home residents without cognitive impairment. The construct of sense of coherence (SOC) is based on Antonovsky’s (1987) theory of salutogenesis. According to Antonovsky, stress, in the sense of tension and appropriate load, is viewed as potentially health promoting. The assumption is that a strong SOC is associated with resources to cope with various kinds of stressful life events or situations. It is postulated that SOC has three components: comprehensibility, manageability, and meaningfulness. An individual’s SOC indicates the extent to which the individual has and is able to general resistance resources (GRRs). GRRs are the biological, material, and psychosocial factors that make it easier for people to perceive their lives as consistent, structured, and understandable. Social support has been defined to be one of several such GRRs (Antonovsky, 1987). Antonovsky (1985) claimed that older people should be provided with experiences that fit their remaining capacity. An underlying assumption in this study is that the burden of care is related to an individual’s coping methods. In a study in Sweden (Andreń & Elmsta˚hl, 2008), caregivers with a high burden of care reported a significantly lower SOC than did caregivers with a lower burden of care. A cross-sectional study in Belgium (Schoenmakers, Buntinx, & De Lepeleire, 2009) found that depression was related to coping strategies, the perceived burden of care, and the patient’s actual mental and physical condition. A systematic review by Schoenmakers, Buntinx, and Delepeleire (2010) found that caregiver characteristics tend to be associated with depression among caregivers. Further, high self-efficacy and strong internal locus of control seem to create less vulnerability to the negative consequences of informal caregiving (Contador, Fernańdez-Calvo, Palenzuela, Migueís, & Ramos, 2012). A study in Norway (Bruvik et al., 2013) reported that strong internal locus of control was the strongest predictor of burden among the caregivers of people with dementia. Similarly, a review that focused on resilience factors (Harmell, Chattillion, Roepke, & Mausback, 2011) determined that caregivers with high levels of personal mastery and self-efficacy, together with the frequent use of positive coping strategies, were better able to handle the role of caregiver. Wolff and Ratner (1999) refer to studies showing that people with weak SOC seem to experience more suffering and anger when faced with stress and that they are more likely to report small burdens as chronic sources of stress. In summary, studies that have examined the subdimensions of social support in relation to mental health among older people have shown that the various dimensions of social support were significant for older people (Cutrona & Russell, 1987; Drageset et al., 2013; Mancini & Blieszner, 1992), and different coping strategies and styles, including SOC, are associated with the burden of care among caregivers of partners with dementia. Based on this literature review, we hypothesized that coping (SOC) is associated with the burden of care and that social support subdimensions are associated with burden.



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Aim and questions The aim of this study was to examine the relationships between the social support subdimensions and SOC and the burden of care for those caring for a partner with dementia. The research questions are the following. (1) Is there a relationship between social support subdimensions and the burden of care among the older caregivers of older partners with dementia who are living at home? (2) Is there a relationship between SOC and the burden of care among older caregivers of older partners with dementia who are living at home?

Methods Design and study setting This is a cross-sectional observation study of people giving informal care to a partner with dementia. We collected the data between February and June 2012. We recruited caregivers from seven municipalities of various sizes in western Norway to the study.

Sample The inclusion criteria were the following: (1) the caregiver was the spouse or domestic partner of a person with dementia; (2) the relationship must have existed for at least 10 years; (3) both the caregiver and the person with dementia were 65 years or older; (4) they must live together at the same address for at least 50% of the time; and (5) the caregiver must consider the cognitive state of the partner to have deteriorated during the past 10 years. A formal diagnosis of dementia was not required. Initially, 200 people wanted to participate. Of these, 110 filled out and returned the questionnaires, and of these, 13 could not be used because the person did not meet the inclusion criteria (10), or because he or she did not complete one or more of the questionnaires (3). We analyzed the answers from 97 caregivers. The response rate was 52%. We do not have any information about the people who dropped out of the study.

Data collection Public community nursing services recruited the caregivers. Community nurses handed out the sets of questionnaires, which were then returned to the researcher by ordinary mail. We collected data about the background variables (sex, age, level of education, duration of marriage or partnership, children, health, duration of symptoms of dementia, use of parttime nursing home or daycare center, and satisfaction with public health agencies) by using a questionnaire designed for this study. To measure the cognitive decline of the person with dementia, we used the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), developed by Jorm (1994). The IQCODE is a 16-item scale, and a relative is asked to compare the person’s cognitive functioning today with that of 10 years ago. For example, the relative is asked to assess whether the person’s ability to remember conversations a few days after they took place has changed. The respondent then chooses from: 1 ¼ much better, 2 ¼ slightly better, 3 ¼ about



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the same, 4 ¼ slightly worse, or 5 ¼ much worse. The IQCODE is widely used to test for dementia (Jorm, 2004; Nygaard, Naik, & Geitung, 2009), and it is the recommended method of assessing dementia in primary health care (Sørensen, Pinquart, & Duberstein, 2002), including in Norway (Norwegian Centre for Dementia Research, 2013; Nygaard et al., 2009). The questionnaire has been shown to have high reliability (alpha coefficient 0.93– 0.97) and measures a general factor of cognitive decline (Jorm, 2004). It is well documented that it validly reflects past cognitive decline, and it has proven to be a good screening test for dementia (Jorm, 2004). We used the Relative Stress Scale (RSS) (Greene, Smith, Gardiner, & Timbury, 1982; Norwegian version, 15 questions) to measure the caregiver burden. The RSS covers various aspects of burden, and in Norway, it is widely used in both clinical and research settings (Nordtug et al., 2011; Ulstein, Bruun Wyller, & Engedal, 2007). The questions are divided into three categories: emotional distress, social distress, and negative feelings. The same alternatives are offered for each question: 0 ¼ never/no, 1 ¼ rarely/slightly, 2 ¼ sometimes/ moderate, 3 ¼ often/quite a bit, and 4 ¼ always/very much: the range of the total score is from 0 to 60. A study of the RSS in Norway found Cronbach’s alpha to be 0.84 for emotional distress, 0.86 for social distress and 0.70 for negative feelings. A wide spectrum of both patients and caregivers enabled the results to be generalized (Ulstein et al., 2007). A factor analysis showed very similar results, strongly indicating that the RSS is useful over time and in various cultural settings (Greene et al., 1982; Ulstein et al., 2007). Social support was assessed using the Norwegian version of the revised Social Provision Scale (SPS) (Cutrona & Russell, 1987). The original scale contains 24 items, four for each of the six provisions (attachment, social integration, opportunity for nurturance, reassurance of worth, reliable alliances and guidance) (Weiss, 1974). Because two categories, reliable alliance and guidance, have been shown to be highly correlated with the other six subscales (Mancini & Blieszner, 1992; Russell, Cutrona, Rose, & Yurko, 1984), they were omitted in the revised scale. This is also in accordance with Andersson and Stevens (1993). The four subscales in the revised scale are: attachment, social integration, nurturance, and reassurance of worth. The responses were scored as 1 ¼ strongly disagree, 2 ¼ disagree, 3 ¼ agree and 4 ¼ strongly agree. High scores indicate high social provision. The revised instrument has been used in studies of older people living in the community and has shown good reliability and high validity; the internal consistency within each subscale was high, with Cronbach’s alpha 0.83–0.92 (Andersson & Stevens, 1993; Drageset et al., 2009; Mancini & Blieszner, 1992; Sævareid, Thygesen, Lindstrom, & Nygaard, 2010). Cronbach’s alpha for the subdimensions of the SPS was 0.50 for attachment, 0.55 for both nurturance, and social integration and 0.74 for reassurance of worth. The Sense of Coherence Scale (SOC-13, 13 items) was used to estimate the caregiver’s SOC. The total score of this 7-point rating scale can range from 13 to 91 (Antonovsky, 1987). The items measured were comprehensibility (5 items), manageability (4 items), and meaningfulness (4 items). The original SOC scale has 29 items. A systematic review of the validity and reliability of the shorter SOC-13 scale (Eriksson & Lindstrom, 2005) showed that it is generally acceptable among older people. The SOC-13 has been used in several studies, such as one studying the mentally intact residents of nursing homes (Drageset et al., 2008) and individuals with a mental disorder (Forsberg, Bjørkman, Sandman, & Sandlund, 2009). A review of the SOC-13, including 127 studies, reported that the SOC-13 has high internal consistency: Cronbach’s alpha 0.70–0.92 (Eriksson & Lindstrom, 2005). Cronbach’s alpha for the SOC-13 was 0.82.



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Statistics We performed statistical analysis using IBM SPSS Statistics (version 19; SPSS Inc., Chicago, IL). We defined statistical significance as p < 0.05. Descriptive statistics summarized demographics and other characteristics for all participants and for women and men. We reported numbers and percentages for categorical variables. We estimated the internal consistency of the SPS subscales and the SOC-13 by using Cronbach’s alpha reliability coefficient. We performed linear regression analysis to examine relationships between (1) the SPS subdimensions and (2) the SOC-13 and the burden of care for those caring for a partner with symptoms of dementia. Further, to adjust for possible cofounders (Helbæk, 2009), we included the following sociodemographic variables in the regression model: age, sex, education, children, feeling healthy, and satisfaction with the public health services. We further adjusted for SOC-13 when we examined the burden of care and the SPS subdimensions.

Ethical considerations We assured anonymity by giving the respondents a stamped envelope in which to return the set of questionnaires directly to the researcher by ordinary mail. We included the inclusion and exclusion criteria on an information sheet following the set of questionnaires, and we thus made these clear both to the community nurses who recruited the respondents and to the respondents themselves. We included a brief information pamphlet with the questionnaires, and it stated that the anonymity of the participants was ensured. To ensure that informed consent could be obtained, we also provided a summary of the study and requested that an enclosed statement of informed consent be signed and returned with the questionnaires. The Western Norway Regional Committee for Medical and Health Research Ethics approved the study (reference 2011/1883/REKvest).

Results Characteristics of the respondents Table 1 presents the demographic characteristics of the 97 caregivers. The mean age was 79 years (range 65–96). Most of the respondents were women (64%). Most of the respondents had shared children with their spouse (90%), reported being satisfied with the help they received from the public health services (80%) and reported feeling healthy (70%). Most had attended upper-secondary school or vocational school (51%). Thirty-three percent had only a primary school education, and 16% had attended college or university.

Burden of care and the subdimensions of social provision The unadjusted statistical analysis (Table 2) showed a significant association between the experience of burden and the subdimension attachment (B ¼ 1.80, 95% CI ¼ 3.26, 0.33, p ¼ 0.02). When adjusted for sociodemographic variables, the subdimension attachment was still significant (B ¼ 2.58, 95% CI ¼ 4.39, 0.77, p ¼ 0.01) (Table 3). When we entered the subdimensions and the total score for SOC into one regression analysis related to burden, the association between the burden of care and attachment was nonsignificant (B ¼ 1.72, 95% CI ¼ 3.48, 0.04, p ¼ 0.06).



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Table 1. Characteristics of the 97 respondents.a Women

Sex Age (years) 65–74 75–84 85–94 95 Education Primary school Upper-secondary school or vocational school College or university Children Yes No Feel healthyb Yes No Satisfaction with public servicesb Yes No

Men

Total

n

%

n

%

n

%

62

64

35

36

97

100

20 35 6 0

33 57 10 0

8 16 11 2

22 46 31 5

28 50 17 2

29 52 18 2

24 31

41 53

7 16

21 47

31 47

33 51

4

7

11

32

15

16

57 5

92 8

30 5

86 14

87 10

90 10

42 19

69 31

25 10

71 29

67 29

70 30

48 8

77 13

30 2

86 6

78 10

80 10

a

The results are numbers followed by percentages. These two questions had two answer alternatives: yes or no.

b

Table 2. Unadjusted associations between burden and the SPS subscales and between the SOC-13: linear regression analysis.

Social Provisions Scale Attachment Nurturance Social integration Reassurance of worth Sense of coherence

B

Confidence interval

p

1.80 0.47 0.29 0.17 0.41

3.26, 0.88, 1.49, 1.13, 46.57,

0.02 0.49 0.63 0.79

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