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The Psychological and Health Consequences of Caring for a Spouse With Dementia: A Critical Comparison of Husbands and Wives a

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Carrie Gibbons , Joy Creese , Mun Tran , Kevin Brazil , Lori e

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Chambers , Bruce Weaver & Michel Bédard

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Research Department , St. Joseph's Care Group , Thunder Bay , Ontario , Canada b

Department of Psychology , Lakehead University , Thunder Bay , Ontario , Canada

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Extensive Services, St. Joseph's Care Group , Thunder Bay , Ontario , Canada d

Department of Clinical Epidemiology & Biostatistics , McMaster University , Hamilton , Ontario , Canada e

Women's Studies, Lakehead University , Thunder Bay , Ontario , Canada f

Human Sciences Division, Northern Ontario School of Medicine, Thunder Bay , Ontario , Canada g

Department of Health Sciences and Northern Ontario School of Medicine , Lakehead University, St. Joseph's Care Group, Thunder Bay , Ontario , Canada Published online: 31 Jan 2014.

To cite this article: Carrie Gibbons , Joy Creese , Mun Tran , Kevin Brazil , Lori Chambers , Bruce Weaver & Michel Bédard (2014) The Psychological and Health Consequences of Caring for a Spouse With Dementia: A Critical Comparison of Husbands and Wives, Journal of Women & Aging, 26:1, 3-21, DOI: 10.1080/08952841.2014.854571 To link to this article: http://dx.doi.org/10.1080/08952841.2014.854571

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Journal of Women & Aging, 26:3–21, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0895-2841 print/1540-7322 online DOI: 10.1080/08952841.2014.854571

ARTICLES

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The Psychological and Health Consequences of Caring for a Spouse With Dementia: A Critical Comparison of Husbands and Wives CARRIE GIBBONS Research Department, St. Joseph’s Care Group, Thunder Bay, Ontario, Canada

JOY CREESE Department of Psychology, Lakehead University, Thunder Bay, Ontario, Canada

MUN TRAN Extensive Services, St. Joseph’s Care Group, Thunder Bay, Ontario, Canada

KEVIN BRAZIL Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada

LORI CHAMBERS Women’s Studies, Lakehead University, Thunder Bay, Ontario, Canada

BRUCE WEAVER Human Sciences Division, Northern Ontario School of Medicine, Thunder Bay, Ontario, Canada

MICHEL BÉDARD Department of Health Sciences and Northern Ontario School of Medicine, Lakehead University, St. Joseph’s Care Group, Thunder Bay, Ontario, Canada

Caring for someone with dementia can be demanding, particularly for spouses living with the care recipient. The main goal of this study was to clarify differences in the experience of caregivers who were husbands and wives with respect to burden, health, healthy behaviors, presence of difficult care recipient behaviors, social supports, and the quality of the premorbid relationship. The Address correspondence to Carrie Gibbons, MPH, Research Department, St. Joseph’s Care Group, 580 North Algoma Street, Thunder Bay, ON P7B 5G4, Canada. E-mail: gibbonsc@ tbh.net 3

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results of this study support research demonstrating a difference between the caregiving experiences of women and men. It is becoming increasingly apparent that female gender is a marker that places them at increased risk of high burden and less support. KEYWORDS caregiver, health, dementia, premorbid relationship, burden, aggressive behavior

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INTRODUCTION Caring for someone with a cognitive impairment such as Alzheimer’s disease (AD) is more demanding than caring for other older frail adults (Bertrand, Fredman, & Saczynski, 2006; Buono et al., 1999; Kim & Schulz, 2008; Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999), and primary caregivers, especially those living with the care recipients, may experience even more burden than other caregivers (Bédard, Raney, et al., 2001; Leinonen, Korpisammal, Pulkkinen, & Pukuri, 2001). Behavior problems in the care recipient are the primary determinants of psychological burden in the caregiver (Bédard, Pedlar, Martin, Malott, & Stones, 2000; Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000; Cullen, Grayson, & Jorm, 1997; Gallicchio, Siddiqi, Langenberg, & Baumgarten, 2002; Miller et al., 2001; Torti, Gwyther, Reed, Friedman, & Schulman, 2004) and may be associated with poorer mental and physical health (Acton, 2002; Croog, Sudilovsky, Burleson, & Baume, 2001; Shanks-McElroy & Strobino, 2001; Yee & Schulz, 2000) and higher mortality (Schulz & Beach, 1999). These data are especially worrisome for women. In Canada nearly 60% of caregivers to seniors are women (Cranswick & Dosman, 2008). A consistent finding in the literature is that women experience more burden than men despite similar caregiving situations (Bédard et al., 1999; Gallicchio et al., 2002; Miller & Cafasso, 1992; Miller et al., 2001; Torti et al., 2004; Yeager, Hyer, Hobbs, & Coyne, 2010). One must also consider that both the gender of the caregiver, and that of the care recipient, may determine burden. This issue is crucial when considering the impact of behavior problems; men may have more severe behavior problems compared to women (Nagatomo et al., 1999). For example, men with AD display more physical aggression (including sexual aggression) toward their caregivers as compared to women (Cahill & Shapiro, 1993; Eastley & Wilcock, 1997; Zuidema, De Jonghe, Verhey, & Koopmans, 2009). These behaviors may carry a higher threat to women caregivers. A larger proportion of wives, compared to husbands, reported that aggressive behaviors were difficult to manage (Collins & Jones, 1997; Robinson, Adkisson, & Weinrich, 2001). Moreover, in one study of spousal caregivers, aggressive behavior and care recipient frustration explained 59% of the variability in the wives’ burden but were unrelated to husbands’ (Bédard et al., 1999).

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Some of this burden may be alleviated through the use of external supports (Coen, Swanwick, O’Boyle, & Coakley, 1997; Levesque, Cossette, & Laurin, 1995; Neal, Ingersoll-Dayton, & Starrels, 1997; Schoenmakers, Buntinx, & Delepeleire, 2010) and may result in improved caregiver health outcomes (Goode, Haley, Roth, & Ford, 1998). However, research indicates that women caregivers receive fewer external supports than men (Bédard et al., 2005). Women’s expectations that they should assume caregiving roles (Office of Technological Assessment, 1990; Torti et al., 2004) and their concerns with the opinions of others (Arai, Sugiura, Miura, Washio, & Kudo, 2000) may explain in part why they may be reluctant to use available services. Alternatively, men may be more inclined to use services (Biegel, Bass, Schulz, & Morycz, 1993). These findings are consistent with data showing that retired and employed women provide more hours of personal care, household work, and social support than men (Collins & Jones, 1997; Cranswick & Dosman, 2008; Miller & Cafasso, 1992; Neal et al., 1997) yet receive fewer supports than men (Clyburn et al., 2000; Miller & Guo, 2000). In addition to behavior problems, a potential determinant of burden that is generally ignored is the quality of the premorbid relationship between husband and wife. One recent study found that satisfaction with the premorbid relationship was related to caregiver burden such that greater satisfaction predicted less burden (Steadman, Tremont, & Davis, 2007). Others have reported that premorbid aggressive behaviors and poorer relationships with the care recipient were related to aggressive behaviors (Hamel et al., 1990). This may explain why some caregivers in seemingly similar situations feel differently about the positive and negative effects of caregiving (Wijeratne & Lovestone, 1996).

OBJECTIVE The main goal of this study was to clarify differences in the experience of husbands and wives with respect to burden, health, healthy behaviors, presence of difficult care recipient behaviors, and social supports. Our primary hypotheses were (a) women will report more burden, poorer health status, and fewer healthy behaviors than their male counterparts; and (b) the quality of the premorbid relationship between the caregiver and care recipient will be related to care recipient behaviors and caregiver burden.

METHODS Participants We recruited 65 spouses (husbands/wives) caring for someone with Alzheimer’s disease. Participants were recruited through the local chapters of the Alzheimer’s society, geriatricians, and public advertising in local media.

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Multiple sources were used to recruit a varied sample of caregivers to maximize the generalizibility of the findings. Participants came from two main geographical regions. One group lived in a densely populated community in Ontario (Hamilton) with just under 500,000 inhabitants and a population density of 438.9 persons/km2 . Participants were also sought in the city of Thunder Bay, a large but remote urban region, with a population of approximately 109,000 and a population density of 331.9 persons/km2 . Our inclusion criteria included a care recipient diagnosis of AD according to NINCDS-ADRDA criteria (McKhann et al., 1984) or DSM-IV criteria and no other major concurrent illness requiring substantial management (e.g., diabetes). Caregivers were spouses who lived alone with the care recipient and were comfortable answering questions in English.

Data Collection Procedure Prior to beginning recruitment and data collection, the study received ethics approval from the appropriate local ethics committees. One trained research assistant (RA) at each site met with the care recipients and caregivers and after obtaining consent, administered the standardized version of the Mini-Mental State Examination (Folstein, Folstein, & McHugh, 1975; Molloy, Alemayehu, & Roberts, 1991) to the care recipient without the presence of the caregiver. Upon completion the RA asked the care recipient to leave the room and then interviewed the caregiver using the following instruments.

Measures We collected basic demographic information about care recipients and caregivers (e.g., age, sex). Caregiver burden was measured with the Zarit Burden Interview (short form; ZBI-S); it has a 2-factor structure examining role strain (demands of the caregiving role) and personal strain (caregivers’ sense of adequacy in their role). The ZBI-S is highly correlated with the longer version in different situations (Bédard, Molloy, et al., 2001; Hébert, Bravo, & Préville, 2000; Whitlatch, Zarit, & Von Eye, 1991). Higher scores indicate greater strain. To measure physical and mental health-related quality of life, we used the Short Form Health Survey-12 (SF-12; J. E. Ware & Kosinski, 2001). The SF-12 has demonstrated favorable construct and predictive validity (J. Ware Jr., Kosinski, & Keller, 1996) and is acceptable for use with older adults (Haywood, Garratt, & Fitzpatrick, 2005). Test/retest reliability coefficients of .88 and .89 have been reported for the physical summary scale, and coefficients of .76 and .78 have been reported for the mental health summary scale (Brazier, Jones, & Kind, 1993; McHorney, Kosinski, & Ware, 1994). Higher scores indicate better health status. Results are expressed as T-scores with a population mean of 50.

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Caregiver depression was measured using the Center for Epidemiologic Studies–Depression Scale (CES-D; Radloff, 1977). This screening instrument is a 20-item self-report depression scale designed to identify current depressive symptomatology in the general population and has been used with older adults (Ros et al., 2011). Higher scores indicate the presence of more depression symptoms. Healthy behaviors were assessed using a modified version of the HealthPromoting Lifestyle Profile (HPLP; Walker, Sechrist, & Pender, 1987). This questionnaire was developed based on the responses of 952 adults and has excellent internal consistency (Cronbach’s alpha = .92). While the original HPLP consists of 48 items, in the present study, 42 items were used; six items were eliminated because they were not relevant to a sample of older adults. Higher scores indicate greater engagement in healthy behaviors. For the measurement of leisure activities, respondents were asked about their participation in leisure activities as used for the Canadian Study on Health and Aging (Canadian Study on Health and Aging, 1994). Each question referred to the previous summer to keep the reference season constant. Responses were scored so that a higher number represented greater frequency, with possible answers being 1 = not at all, 2 = less than once per week, 3 = once per week, or 4 = two or more times per week. Here, greater scores indicate greater participation. The presence of care recipient problems with activities of daily living (ADL) was assessed with the ADL scale developed by Lawton and Brody (Lawton & Brody, 1969). This instrument assesses dependence in “basic” (BADL; e.g., grooming) and “instrumental” ADL (IADL; e.g., using the phone); higher scores indicate greater independence. To capture aggressive behaviors, we used the Cohen-Mansfield Agitation Inventory for Relatives (CMAI-R; Cohen-Mansfield, Werner, Watson, & Pasis, 1995), which is an expanded form of the Cohen-Mansfield Agitation Inventory used to assess behaviors in older adults (Cohen-Mansfield, Marx, & Rosenthal, 1989). The CMAI-R assesses informant report on the frequency of 34 inappropriate care recipient behaviors on a 7-point scale ranging from never to several times an hour. The CMAI-R includes four subscales: physically aggressive behavior (PAB; e.g., hitting, scratching, grabbing), verbally aggressive behavior (VAB; e.g., screaming, cursing), physically nonaggressive behavior (PNAB; e.g., pacing, hiding things), and verbally nonaggressive behavior (VNAB; e.g., repetitive sentences, complaining, whining). Therefore, greater scores indicate a higher frequency of the behaviors examined. Caregivers were asked whether they were receiving primary care support and what other supports they used, including formal (e.g., home care, respite, health-care utilization) or informal (e.g., other family caregivers) supports. Informal supports were evaluated with the Multidimensional Scale of Perceived Social Support (MSPSS; Zimet, Dahlem, Zimet, & Farley, 1988).

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The MSPSS is a 3-factor instrument designed to assess the perceived availability of family, friend, and significant other supports (Kane & Kane, 2000). It has good internal consistency and test/retest reliability (Zimet et al., 1988) and appears to retain its psychometric properties (Dahlem, Zimet, & Walker, 1991) and factor structure (Eker & Arkar, 1995) across populations, including older adults (Stanley, Beck, & Zebb, 1996). Higher scores indicate greater perceived support. The quality of the premorbid relationship between caregivers and care recipients was assessed with the Social Interaction Scale (SIS; Gilleard, Belford, Gilleard, Whittick, & Gledhill, 1984). Caregivers rated the quality of the marital relationship prior to the onset of the care recipient’s illness. For the purposes of the present study, the term “elderly relative” used on the SIS was replaced with “spouse.” The scale consists of six items regarding the past frequency of certain social interactions. Possible responses range from 0 (never) to 2 (much of the time), with higher scores indicative of a poorer premorbid relationship.

Statistical Analyses The data were analyzed using IBM SPSS Statistics version 19. Demographic characteristics are reported using means and standard deviations for scaled variables, or frequencies and percentages for categorical variables. Although the participants came from two different geographical regions, a decision was made to exclude region as a variable in our models. In analyses (not presented here), we found no differences between the groups when examining burden and the nature of the premorbid relationship. Differences between men and women were assessed with the χ 2 -test of association for categorical variables, or independent samples t-tests for scaled variables. Multiple linear regression analysis was used to examine the impact of caregiver sex, problem behaviors (CMAI-R–Total), and the premorbid relationship (SIS–Total) on caregiver burden. Three separate models were run using the same explanatory variables but with different measures of burden (ZBI–Total, ZBI–Role Strain, and ZBI–Personal Strain). Given the number of comparisons made in this study, there is the possibility of type I errors or “false positive” results. Although the degree of significance for many of the p values is strong enough to assure confidence in the results, some present with significance levels close to the 0.05 threshold and therefore should be interpreted with caution.

RESULTS Demographics The sample comprised 45 (69.2%) female caregivers and 20 (30.8%) male caregivers. The mean ages were 74.57 (SD = 9.49) and 76.55 (SD = 9.06) for

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female and male caregivers respectively; this difference was not statistically significant, t(63) = 0.79, p = 0.434. A total of 27 (41.54%) were from the urban region, whereas the remaining 38 individuals (58.46%) were from the isolated region. The overwhelming majority of caregivers were retired (89.2%). Length of time providing care was roughly the same for female (M = 5.45 years, SD = 4.16) and male caregivers (M = 4.63 years, SD = 3.28), t(63) = –0.78, p = 0.439. In total, 83.1% of caregivers had a medical condition themselves with a greater proportion of women (91.1%) compared to men (65.0%), χ 2 (1, N = 65) = 6.72, (p = .010). Medical conditions most frequently reported included arthritis, back problems, diabetes, heart conditions, high cholesterol, hypertension, anxiety, and osteoporosis. Nearly all caregivers (83.1%) were prescribed medication(s). The majority of care recipients were male (N = 45) being cared for by their partners of the opposite sex. Male care recipients (M = 79.11, SD = 8.43) appeared older than female care recipients (M = 75.16, SD = 8.76); however, this difference was not statistically significant, t(63) = 1.72, p = .090. The overwhelming majority of care recipients had medical conditions (93.8%) in addition to dementia, and nearly all were prescribed medications (92.1%). The most frequently reported medical conditions included arthritis, cancer, heart conditions or stroke, hypertension, and Parkinson disease.

Caregiver Health Outcomes Detailed caregiver health outcomes results can be found in Table 1. The mean total scores on the ZBI-S indicated that women experienced greater burden than their male counterparts. For the Personal Strain subscale, the difference between men and women was not statistically significant; however, on the Role Strain subscale, women indicated significantly greater burden than their male counterparts. Based on the Physical Component Summary scale and the Mental Component Summary scale of the SF12, male caregivers indicated better physical and mental health status than women. According to the CES-D, women reported more depression symptoms than men. Finally, male caregivers exhibited more health-promoting activities than their female counterparts.

Caregiver Leisure Activities For this set of questions there was little difference between the responses of male and female caregivers (see Table 2). Playing cards or participating in sports took place relatively infrequently for both men and women. Visiting friends, working in the garden, and going to clubs or church took place once per week for most respondents. The activities in which caregivers engaged with the most frequency were going shopping and going for a walk (approximately twice or more per week). There was a statistically significant

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TABLE 1 Caregiver Health Outcomes

Burden ZBI–Total Male Female ZBI–Role Strain Male Female ZBI–Personal Strain Male Female Health Status SF12–Physical Component Summary Male Female SF12–Mental Component Summary Male Female Depression–CES-D Male Female Healthy Behaviors–HPLP Male Female

N

Mean (SD)

t

p

20 45

12.80 (6.36) 19.44 (10.55)

−3.13

.003

20 45

9.85 (5.29) 15.78 (8.84)

−3.35

.001

20 45

2.95 (1.88) 3.67 (3.58)

−1.06

.295

20 45

49.58 (12.16) 39.95 (13.61)

2.72

.009

20 45

46.88 (10.33) 40.86 (11.28)

2.04

.046

20 44

10.15 (7.71) 18.43 (9.36)

−3.72

.001

20 43

116.70 (25.33) 102.67 (24.84)

2.07

.042

Note. ZBI = Zarit Burden Interview, SF12 = Short Form Health Survey–12, CES-D = Center for Epidemiologic Studies–Depression Scale, HPLP = Health-Promoting Lifestyle Profile.

TABLE 2 Caregiver Leisure Activities

Visiting friends Male Female Going shopping Male Female Working in the garden Male Female Golf or other sports Male Female Go for a walk Male Female Go to clubs or church Male Female Play cards Male Female

N

Mean (SD)

t

p

20 45

2.30 (1.03) 2.67 (0.93)

−1.42

.161

20 45

3.75 (0.55) 3.29 (0.70)

2.87

.006

20 45

2.05 (1.23) 2.64 (1.32)

−1.71

.087

20 44

1.35 (0.81) 1.25 (0.72)

0.47

.640

20 44

3.40 (1.00) 2.93 (1.19)

1.64

.108

20 45

2.45 (1.23) 2.51 (1.16)

−0.19

.852

20 45

1.45 (0.83) 1.73 (1.05)

−1.17

.248

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Caring for a Spouse With Dementia TABLE 3 Care Recipient Outcomes

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N Lawton Scale Basic Activities of Daily Living Male 45 Female 20 Instrumental Activities of Daily Living Male 45 Female 20 Cohen-Mansfield Agitation Inventory for Relatives Total Score Male 42 Female 18 Physically Aggressive Behavior Subscale Male 43 Female 20 Physically Nonaggressive Behavior Subscale Male 45 Female 20 Verbally Aggressive Behavior Subscale Male 43 Female 19 Nonverbally Aggressive Behavior Subscale Male 43 Female 19

Mean (SD)

t

20.40 (5.20) 21.25 (4.66)

−.63

.533

12.48 (4.90) 12.42 (3.92)

0.05

.957

−2.66

.010

2.37 (3.96) 1.15 (2.39)

1.27

.208

10.60 (8.56) 7.30 (5.97)

1.56

.123

3.16 (3.39) 1.42 (2.14)

2.06

.044

11.91 (9.76) 5.05 (4.28)

3.85

The psychological and health consequences of caring for a spouse with dementia: a critical comparison of husbands and wives.

Caring for someone with dementia can be demanding, particularly for spouses living with the care recipient. The main goal of this study was to clarify...
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