Aging & Mental Health
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Quality of in-home care, long-term care placement, and the survival of persons with dementia McKee J. McClendon & Kathleen A. Smyth To cite this article: McKee J. McClendon & Kathleen A. Smyth (2015) Quality of in-home care, long-term care placement, and the survival of persons with dementia, Aging & Mental Health, 19:12, 1093-1102, DOI: 10.1080/13607863.2014.1003284 To link to this article: http://dx.doi.org/10.1080/13607863.2014.1003284
Published online: 29 Jan 2015.
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Date: 05 November 2015, At: 18:37
Aging & Mental Health, 2015 Vol. 19, No. 12, 1093 1102, http://dx.doi.org/10.1080/13607863.2014.1003284
Quality of in-home care, long-term care placement, and the survival of persons with dementia McKee J. McClendona* and Kathleen A. Smythb a
Department of Neurology, School of Medicine, Case Western Reserve University, Cleveland, OH, USA; bDepartment of Epidemiology and Biostatistics, Case Western Reserve University School of Medicine and Neurological Outcomes Center, University Hospitals of Cleveland Case Medical Center, Cleveland, OH, USA
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(Received 5 September 2014; accepted 23 December 2014) Purpose of the study: Caregivers of persons with dementia living at home adopt a variety of caregiving styles that vary in quality. Three styles of high-quality care and poor-quality care have been identified. The outcomes, however, of varying styles of caregiving are unknown. Our purpose was to investigate the linkage of quality of care to long-term care placement and survival. Design and methods: We used a sample of 148 primary caregivers of a relative living at home and needing assistance due to memory or thinking problems. We used items from four existing scales and five new items to construct measures of high-quality and poor-quality care. Long-term care and survival were determined from two follow-ups. Cox proportional hazards regression was used to estimate the relationship of quality of care to long-term care placement and survival. Results: Poor quality of care increased the risk of long-term care placement, as expected, but high-quality care was not related to placement. Surprisingly, high-quality care increased the risk of death while poor-quality care decreased the risk. Secondary results were: wishful/intrapsychic coping (a dysfunctional type of emotion-focused coping) and long-term care placement shortened the survival; and caregiver personality traits of neuroticism and agreeableness lengthened the survival. Implications: It is premature to recommend caregiver interventions based on our unexpected findings. Further studies are vital and should include care-recipient impairments and the quality of life of the person with dementia as additional outcomes. Keywords: quality of caregiving; coping; long-term care; dementia caregiving; survival
Among persons with Alzheimer’s disease or a related dementia, between 60 and 70 percent live at home where four out of five are cared for by family members (Alzheimer’s Association, 2012). Because the caregiver role is usually unanticipated, learning to become a caregiver typically occurs ‘on the job’. As a result of lack of preparation, caregivers adopt a variety of informal caregiving styles, some of which may be less than optimal or even harmful. Little is known about the consequences for the person with dementia (PWD) of the quality of care (QOC) provided by family members. Is care that is considered to be of high quality actually beneficial to the PWD, and if so, in what ways? To better understand the effectiveness of QOC in the home for the well-being of the PWD, we investigated two important outcomes, longterm care placement and survival. Quality of caregiving styles Several dimensions of high-quality care in the home have been singled out and measured: for example, the Exemplary Care scale (Burgio, Gitlin, Kirschbaum, & Schulz, 2005; Dooley, Shaffer, Lance, & Williamson, 2007), the General Caregiving scale (Farran et al., 2011), and the Encouragement and Active Management scales (Hinrichsen & Niederehe, 1994). Types of care that reflect poor QOC have also been measured, including the Potentially *Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
Harmful Behavior scale (Williamson, Shaffer, & The Family Relationships in Late Life Project, 2001), the Frustrations of Caregiving scale (Burgio et al., 2005), and the Criticism scale (Hinrichsen & Niederehe, 1994). Exemplary care, potentially harmful behavior, and adequate care (assistance with activities of daily living [ADL]) were found to be relatively independent indicating that QOC is multidimensional (Christie et al., 2009; Dooley et al., 2007). Additional differentiation of styles of caregiving in the home have been identified (McClendon & Smyth, 2013), including three types of high QOC (Personalized, Respectful, and Compensatory) and three types of poor QOC (Punitive, Controlling, and Withdrawing). Caregiver personality, coping, and quality of care Because of the lack of preparedness for the caregiving role and its attendant stress, the styles of caregiving that are adopted are likely to draw on preexisting psychosocial characteristics of the caregiver. Personality traits are deep psychological tendencies that influence habits, attitudes, skills, and relationships (McCrae & Costa, 2008). These traits help an individual adapt to the changing social environment. New caregivers may be especially likely to draw on personality traits to help them adjust to the novel demands of the role.
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The link between personality traits and QOC has been supported by several studies. A qualitative study of informal care of persons with dementia in the Netherlands found that caregiver neuroticism was related to a ‘nonaccepting’ strategy of care involving impatience, anger, and walking away (de Vugt et al., 2004). Even though hospital nurses are trained to provide for the needs of patients, the personality trait of neuroticism was related to lower responsiveness, assurance, and empathy for patients, while the trait of openness was related to greater responsiveness (Teng, Hsu, Chien, & Chang, 2007). And most recently, the six caregiving styles used by family caregivers of a PWD were extensively linked to their personality traits (McClendon & Smyth, 2013); the traits of agreeableness, neuroticism, conscientiousness, and openness were linked to higher QOC, while extraversion was associated with poorer QOC. A second factor that has influenced the caregiving styles that are adopted is the caregiver’s ability to cope with the stress of the role. Caregivers use different strategies for coping with stress, such as problem-focused coping (e.g., instrumental), emotion-focused coping (e.g., avoidance/escape), and cognitive coping (e.g., acceptance) (Lazarus & Folkman, 1984). Instrumental and acceptance coping have been found to be functional for caregiver wellbeing, whereas avoidance/escape coping has been found to be dysfunctional (e.g., Kneebone & Martin, 2003). Those who cope better should be able to provide a higher QOC. Several studies have supported this relationship. Active cognitive and active behavioral coping were correlated with greater use of the encouragement and active management styles of caregiving, while avoidance coping was correlated with greater use of the criticism style of caregiving (Hinrichsen & Niederehe, 1994). Dysfunctional coping was related to increased caregiver abuse of family members with dementia (Cooper et al., 2010). Caregivers of PWD who used wishful and fantasy coping (emotion-focused coping involving avoidance/escape) provided poor QOC more often; those who used instrumental coping provided punitive care less frequently (McClendon & Smyth, 2013). Outcomes of caregiving for PWD The outcomes of QOC for the PWD are largely unknown. A qualitative study (de Vugt et al., 2004) found that a non-adaptive style of caregiving (impatience, irritation, anger, confrontation, and withdrawal) leads to more behavioral and psychological problems than a supporting style (adapting to or stimulating the care-recipient’s abilities). Although impairments of the PWD such as these are important outcomes of caregiving, we focused on the effect of different styles of QOC on two outcomes that have not been studied, namely, long-term care (LTC) placement and survival. Long-term care placement Although there have been no studies of the effect of QOC on actual LTC placement, potentially harmful behavior
was found to be related to a greater desire to institutionalize among Caucasians and Latinos, and exemplary care was related to less desire to institutionalize among African Americans (Sun et al., 2013). LTC placement is a source of formal social support for the caregiver that may be turned to when the demands of caregiving are taxing the resources of the caregiver. Consistent with this interpretation, studies have found that greater care-recipient impairments (ADL, cognitive, behavior problems), greater caregiver stress (depression, anxiety), greater caregiver burden (e.g., feeling trapped in the role), and less caregiver social support increased the risk of LTC placement (Gaugler, Kane, Kane, Clay, & Newcomer, 2003; Gaugler, Yu, Krichbaum, & Wyman, 2009; Mittelman, Haley, Clay, & Roth, 2006). In addition, care-recipients who were White, male, older, living alone, or cared for by a caregiver who was older, male, or of high income were more likely to be placed (Gaugler, Kane, Kane, & Newcomer, 2005). The effectiveness of caregiver coping for delaying LTC placement was not supported by the few studies that investigated it. The relationship of caregiver personality traits to LTC placement has not been studied. Survival Efforts to understand variation in survival among persons with dementia have focused on the characteristics of the PWD. Factors that decrease life expectancy even without dementia (older age and male gender) and factors associated with the progression of dementia (early age of onset, cognitive impairment, duration of illness, behavioral problems, and dependency in ADL) are strongly predictive of shortened survival time (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; McClendon, Smyth, & Neundorfer, 2006; Newcomer, Covinsky, Clay, & Yaffe, 2003; Stern et al., 1997; van Dijk, Dippel, & Habbema, 1991). A few characteristics of the caregiving environment have also been linked to the survival of the PWD: wishful/intrapsychic coping (emotion-focused coping involving avoidance/ escape), the move of the PWD from in-home care to LTC, male caregiver gender, and older caregiver age were associated with shortened survival (McClendon et al., 2006); low caregiver distress (Brodaty, McGilchrist, Harris, & Peters, 1993) and the caregiver personality trait of neuroticism (McClendon & Smyth, 2013) were related to longer survival of the PWD. The impact of QOC in the home on survival has not been investigated. Study aims and design Our primary aim was to investigate the relationship of quality of in-home care to LTC placement and the survival of the PWD. We used Cox regression models to test the impact of three styles of high QOC and three styles of poor QOC on LTC placement and survival. Because personality traits and coping strategies of caregivers have been found to be related to their caregiving styles and to survival, we also included five personality traits and three coping strategies in our models to guard against obtaining biased estimates of the effects of QOC. LTC placement
Aging & Mental Health was also included in the survival model. We tested 17 additional variables as potential controls for inclusion in the models. The explanatory and control variables (caregiving, coping, personality, etc.) were assessed with a mail survey at baseline; LTC placement and death were determined approximately two years later.
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Methods Sample Our sample consisted of primary caregivers who spent more time than any other person providing day-to-day care of a relative living at home and needing assistance due to memory or thinking problems. The caregivers were volunteers from research registries, clinical trials, Alzheimer’s Association support groups, physician referrals, and the community who resided in northeast Ohio. We used the eight-item AD8 scale (Galvin et al., 2005) in a telephone screening interview of the volunteers to select those caring for a PWD. The AD8 scale is a brief, informant (caregiver)-based measure that queries whether since onset there has been an increase in cognitive problems with judgment, interest, repetitiveness, learning, naming the month, financial affairs, remembering appointments, and thinking or memory. The AD8 had excellent discrimination between cognitively normal persons and those with very mild dementia as evaluated by the Clinical Dementia Rating scale (Galvin et al., 2005). For each item, those who reported an increase in problems were asked whether it was ‘some increase’ or ‘a great increase’; each item was coded 0 D no increase, 1 D some increase, and 2 D a great increase. After summing the items, a total score of 3 was used as the cut-off. The AD8 and selection criteria are described fully in McClendon and Smyth (2013). Those who were found eligible in the screening interview and agreed to participate were mailed a questionnaire and consent forms that were approved by our Institutional Review Board. In the questionnaire, the caregiver reported on their experiences with caregiving, their health, and various demographics. All information collected in the study about the care-recipients was based on caregiver reports in the questionnaire and in brief followups on LTC and survival.
Long-term care and survival We conducted two mail follow-ups to determine whether the PWD had been placed in LTC and/or was deceased. The first was carried out one year after the collection of all baseline data and the second follow-up was carried out one year after completion of the first follow-up for PWD who were not reported to be deceased on the first followup. Caregivers who did not return their questionnaires were contacted by telephone to determine LTC placement and death. We defined LTC as either a nursing home or an assisted living facility. The validity of including assisted living in the definition is discussed by McClendon et al. (2006).
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Measures of quality of caregiving High QOC We chose several existing scales that had not been previously analyzed together. We adopted the 14-item Exemplary Care scale (Burgio et al., 2005): e.g., I really try to avoid interrupting [care-recipient] when he/she is talking; and I actively avoid treating [care-recipient] like a child. To measure environmental support, we used five items from the Active Management subscale of the Dementia Management Strategies scale (Hinrichsen & Niederehe, 1994), augmented with five new items: e.g., I arranged my relative’s environment so that he/she could do as much by himself/herself as possible; and I made sure my relative was able to see or touch things that were meaningful to him/her. Poor QOC We used the eight-item Frustrations of Caregiving scale (Burgio et al., 2005): e.g., I felt like screaming or yelling at [care-recipient]; and I blamed [care-recipient] for having created difficulties. We also included the nine items from the Criticism subscale of the Dementia Management Strategies scale: e.g., I criticized or scolded my older relative to try to prompt better behavior from him/her; and I withdrew from my relative. The scales were adapted for our study by giving all of the items the same response scale: 0 D never, 1 D seldom, 2 D sometimes, 3 D often, and 4 D always. Caregiver personality The 44-item Big Five Inventory (John, Naumann, & Soto, 2008) was used to measure the five personality traits that constitute the dominant model of personality. The Big Five model consists of: Neuroticism (anxiety, hostility, depression, vulnerability), Extraversion (warmth, gregariousness, assertiveness), Openness to experience (aesthetics, feelings, ideas, values), Agreeableness (trust, altruism, compliance, modesty), and Conscientiousness (competence, order, dutifulness, achievement striving). Caregivers were asked to respond to 44 statements (e.g., I see myself as someone who is talkative) on a five-point scale (1 D disagree strongly, . . ., 5 D agree strongly). Each trait (Openness [10 items], Conscientiousness [9 items], Extraversion [8 items], Agreeableness [9 items], and Neuroticism [8 items]) was scored as the mean of the items giving a possible range of 1 5. Caregiver coping Styles of coping were assessed with three subscales (McClendon, Smyth, & Neundorfer, 2004) from the 16item scale of Pruchno and Resch (1989): Instrumental coping (five items, e.g., Made a plan of action and followed it.); Acceptance coping (four items, e.g., Made the best of it.); and wishful/intrapsychic coping (seven items, e.g., Wished you could change the way you felt; and Told yourself things to help you feel better). Responses were coded 0 D never, 1 D seldom, 2 D sometimes, 3 D often,
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and 4 D always. The subscales were scored as the mean of the items and had a possible range of 0 4.
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Other measures Seventeen potential control variables were included; variables that have been found to be related to one or both outcomes or to the caregiving styles, or variables that we believed would be related to the outcomes. Activities of daily living The degree of care-recipient needs for assistance with basic and instrumental ADL was assessed with 15 items from the Multidimensional Functional Assessment questionnaire (Fillenbaum & Smyer, 1981) (e.g., Is [carerecipient] able to get in and out of bed?), each scored on a three-point scale (0 D yes, with no help; 1 D yes, with some help; 2 D no). The ADL scale was scored as the mean of the items and had a possible range of 0 2. Caregiver depression We used the 20-item Center for Epidemiological Studies Depression scale (CES-D; Radloff, 1977) that asked how often during the past week the respondent felt a certain way (e.g., I was bothered by things that don’t usually bother me). Items were scored from 0 ( .05. The six QOC scales, the three coping scales, and the five personality scales were included in both models (plus LTC placement in the survival model) but were not included in the stepwise removal of variables. Under the proportional-hazards assumption, a significant (p .05 in this study) positive regression coefficient indicates that a unit increase in the covariate is associated with an increase in the risk of death, which is assumed to be the same across all time points. We tested this assumption by computing the correlation between the natural log of time to death and the Schoenfeld residual of each covariate for both those placed in LTC and those deceased. A significant correlation indicated a nonproportional effect that we modeled by including an interaction term for the covariate and time to death in the regression equation. Results Sample characteristics Of 298 caregivers living in northeast Ohio who were selected in our screening interview, 97 (32.6%) refused to participate, 53 (17.8%) did not return the consent form or the questionnaire, and 148 (49.7%) returned completed questionnaires and signed consent forms. Table 1 gives the means and SDs for all variables and Cronbach’s alpha for the scales of the 148 participating caregivers and carerecipients. Of those 148 dyads, 81% resided in the Cleveland area; 91% were White and 9% were African-American; 62% of the caregivers and 55% of the care-recipients were female; 76% of the caregivers were the spouse of the care-recipient; 29% of the caregivers were employed; the mean caregiver health (2.4) and care-recipient health (2.8) were between very good and good; the mean caregiver and care-recipient ages were 69 and 77, respectively; and the mean years since onset of dementia at baseline was 6.3. Long-term care and survival We conducted a follow-up one year after the baseline survey and a second follow-up one year after the first to determine LTC placement and death. The response rate was 98.6% to the first follow-up and 90.0% to the second. At the completion of the second follow-up, 45 PWD were known to be deceased and 58 were living in an LTC facility (nursing home or assisted living) either currently or at the time of their death (Table 1). The mean years since onset of dementia until LTC placement and death were 7.8 and 9.5, respectively.
Aging & Mental Health Table 1. Means, standard deviations, and values of Cronbach alpha.
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Mean
SD Alpha
CR years till LTC (n D 58) 7.827 2.961 CR years till death (n D 45) 9.546 3.830 CR years of dementia 6.281 3.653 CR ADL (0 2) .872 .490 CR NPI (0 3) .681 .467 CR health (1 excellent, . . ., 5 poor) 2.757 .994 CG health (1 excellent, . . ., 5 poor) 2.372 .867 CG employed (1 yes, 0 no) .291 .456 CG-CR race (1 White, 0 African-American) .912 .430 CG spouse (1 yes, 0 no) .757 .284 CG-CR income ($1000s) 64.357 42.898 CG age (years) 68.991 11.818 CR age (years) 77.020 9.259 CG gender (1 female, 0 male) .622 .487 CR gender (1 female, 0 male) .554 .499 CG CES-D (0 60) 10.858 9.915 CG role captivity (1 4) 2.025 .854 CG role overload (1 4) 2.311 .820 CG expressive social support (1 5) 4.220 .718 Extraversion trait (1 5) 3.363 .771 Agreeableness trait (1 5) 4.306 .525 Conscientiousness trait (1 5) 4.204 .553 Neuroticism trait (1 5) 2.609 .764 Openness trait (1 5) 3.845 .631 Instrumental coping (1 5) 3.381 .678 Acceptance coping (1 5) 4.071 .638 Wishful–intrapsychic coping (WIC) (1 5) 2.674 .700 Personalized caregiving (0 4) 3.034 .651 Respectful caregiving (0 4) 3.080 .701 Compensatory caregiving (0 4) 2.854 .789 Punitive caregiving (0 4) .459 .478 Controlling caregiving (0 4) 1.554 .760 Withdrawing caregiving (0 4) 1.206 .808
.95 .79
.89 .86 .82 .88 .82 .74 .70 .80 .77 .80 .72 .70 .82 .71 .76 .76 .82 .54
CG D caregiver, CR D care-recipient.
Quality of care After dropping one item due to little variance (considered using physical restraint), we conducted an exploratory factor analysis (principal components with orthogonal rotation) of the 40 remaining items. The scree plot indicated that four factors might exist. But because the items came from multiple sources and had not previously been factored together, we elected to examine five- and six-factor solutions as well. We chose the six-factor model because it provided the most meaningful factors (McClendon & Smyth, 2013). An item was retained in a scale only if its primary loading was at least .10 greater than its largest secondary loading. After conducting a second-factor analysis for the 30 items that met this criterion, the same six factors were obtained. Six QOC scales were created from the items that loaded on the six factors (McClendon & Smyth, 2013): (1) Personalized Caregiving was constructed from six items that showed caregiver efforts to promote meaningful activities that reflected the individuality and
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preferences of the care-recipient and that facilitated the autonomy of the care-recipient; (2) Respectful Caregiving was constructed from five items that involved caregiver efforts to avoid treating the care-recipient in a disrespectful or judgmental manner; (3) Compensatory Caregiving was constructed from six items that represented efforts by the caregiver to environmentally and personally compensate for the impairments of the persons with dementia; (4) Punitive Caregiving was constructed from six items that indicated the caregiver was expressing anger in a punitive fashion that did not take into account the limitations of the persons with dementia; (5) Controlling Caregiving was constructed from five items that reflected caregiver efforts to control the behavior of the PWD by imposing conformity and limiting autonomy; (6) Withdrawing Caregiving was constructed from two items that indicated the caregiver withdrew or left when caregiving became too frustrating. Appendix 1 lists the items included in each scale. Cronbach’s alpha (Table 1) was good for each scale except Withdrawing. Withdrawing was retained in the analyses because its face value was distinctly different than the Punitive and Controlling styles. Each scale was scored as the mean of the items giving a possible range of 0 4. Their means (Table 1) indicated that Personalized, Respectful, and Compensatory were the most often reported styles of caregiving, followed by Controlling, Withdrawing, and Punitive. Long-term care placement We estimated a Cox regression model for time to LTC placement that contained six QOC variables, three coping variables, five personality trait variables, and 17 potential control variables, for a total of 31 covariates. To simplify the model, we then conducted a backward stepwise regression to determine which of the 17 control variables could be removed without significantly reducing the fit of the model (p > .05 for removal). The reduced model contained two of the 17 control variables (years of dementia and ADL) plus the QOC, coping, and personality variables for a total of 16 covariates (Table 2, Model 1). None of the tests for nonproportional hazards were significant and thus the results we report are for the proportional hazards models. Of the Cox regression coefficients (B) for the six QOC scales, only the coefficient for Withdrawing was statistically significant (Table 2, Model 1). The positive coefficient indicates that the greater the Withdrawing style of caregiving, the greater was the risk of LTC placement. The hazard ratio (eB) indicates that for a unit increase in Withdrawing the rate of placement increases by a factor of 1.5 (50%). Although the estimated coefficients for Punitive, Controlling, and Withdrawing (¡.085, .274, and .433, respectively) differ from one another, we conducted a test to determine whether they were significantly different. We created a composite scale equal to the mean of the three poor QOC scales [(Punitive C Controlling C Withdrawing)/3] and entered it in the regression equation in place of the three variables. We also created a scale for high
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Table 2. Cox regression coefficients for time to LTC placement after stepwise deletion of fifteen potential control variables.
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Model 1: Six QOC scales
CR years of dementia CR ADL (0–2) Extraversion trait (1 5) Agreeableness trait (1 5) Conscientiousness trait (1 5) Neuroticism trait (1 5) Openness trait (1 5) Instrumental coping (0 4) Acceptance coping (0 4) Wishful–intrapsychic coping (WIC) (0 4) Personalized caregiving (0 4) Respectful caregiving (0 4) Compensatory caregiving (0 4) Punitive caregiving (0 4) Controlling caregiving (0 4) Withdrawing caregiving (0 4) High QOC (0 4) Poor QOC (0 4) Entire model
Model 2: Six QOC scales
B
Sig.
eB
B
Sig.
eB
¡.862 1.783 ¡.292 ¡.342 ¡.193 ¡.199 .051 .145 ¡.565 .144 .258 .232 ¡.260 ¡.085 .274 .433
.000 .000 .265 .276 .509 .427 .861 .570 .028 .610 .426 .347 .349 .821 .270 .033
.422 5.945 .746 .710 .824 .820 1.053 1.157 .568 1.155 1.294 1.261 .771 .919 1.315 1.542
¡.825 1.488 ¡.343 ¡.338 ¡.142 ¡.200 .095 .183 ¡.570 .111
.000 .000 .180 .287 .629 .415 .744 .458 .026 .692
.438 4.426 .710 .713 .867 .819 1.100 1.200 .566 1.117
.300 .748
.370 .027
1.351 2.114
df 12
Sig. .000
Chi-sq. 120.5
df 16
QOC equal to the mean of Personalized, Respectful, and Compensatory and substituted it for the three high QOC variables to test whether or not the coefficients of the high QOC variables were significantly different. The coefficient for the poor QOC scale was positive and significant (Table 2, Model 2). The inclusion of the poor QOC scale in place of Punitive, Controlling, and Withdrawing did not significantly reduce the fit of the model (Table 3). Therefore, we could not conclude that the coefficients for Punitive, Controlling, and Withdrawing were significantly different and we could use a single composite scale for poor QOC without harming the fit of the model. Instead of pointing to one or another of the three scales as most important (i.e., Withdrawing), we concluded that the greater the poor QOC, the greater was the risk of LTC placement; more precisely, for a unit increase in poor QOC, the rate of placement increases by a factor of about 2 (eB). The inclusion of the high QOC scale in place of Personalized, Respectful, and Compensatory also did not significantly reduce the fit of the model (Table 3). However, the coefficient for the high QOC scale was not significantly different from zero (Table 2, Model 2). Among the coping variables, the coefficient for Acceptance coping was negative and significant in both models, which indicated that the greater the use of
Sig. 000
Chi-sq. 117.1
Acceptance coping, the less likely was the PWD to move to LTC. The two control variables were both significant: the greater the need for ADL assistance, the more likely was LTC placement; and the longer the PWD had had dementia, the less was the risk of placement. Survival We first estimated a Cox regression model for time to death that contained the same covariates that were used for LTC, plus a dummy variable for whether or not the PWD had been placed in LTC for a total of 32 covariates. We then conducted a backward stepwise regression to determine which of the 17 potential control variables could be removed (p > .05 for removal). The reduced model contained eight control variables plus the 15 target variables (including LTC placement) for a total of 23 covariates. None of the tests for nonproportional hazards were significant. Two QOC styles were significantly related to survival (Table 4, Model 1); the greater the Respectful caregiving, the shorter the expected survival and the greater the Controlling caregiving, the longer the expected survival. Because the coefficients for Personalized and Respectful were both positive (greater risk of death) whereas that for
Table 3. Tests of equality of regression coefficients for quality of care variables. Outcome
Null hypothesis: equal regression coefficients (B)
Long-term care Long-term care Death Death
Personalized, Conscientiousness, Instrumental Punitive, Controlling Withdrawal Personalized, Conscientiousness Punitive, Controlling Withdrawal
Chi-squared
df
Sig.
Null hypothesis decision
1.840 1.491 .271 .884
2 2 1 2
.399 .475 .602 .643
Do not reject Do not reject Do not reject Do not reject
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Table 4. Cox regression coefficients for time to death of PWD after stepwise deletion of ten potential control variables. Model 1: Six QOC scales
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B CR years of dementia CR ADL (0 2) CR health (1 excellent, . . ., 5 poor) CG employed (1 yes, 0 no) CG spouse (1 yes, 0 no) CG age (years) CG gender (1 female, 0 male) CR gender (1 female, 0 male) Extraversion trait (1 5) Agreeableness trait (1 5) Conscientiousness trait (1 5) Neuroticism trait (1 5) Openness trait (1 5) Instrumental coping (0 4) Acceptance coping (0 4) Wishful–intrapsychic coping (WIC) (0 4) Personalized caregiving (0 4) Respectful caregiving (0 4) Compensatory caregiving (0 4) Punitive caregiving (0 4) Controlling caregiving (0 4) Withdrawal caregiving (0 4) Personalized-respectful caregiving Poor QOC (0 4) LTC placement Fit of entire model
¡1.180 1.443 .454 1.829 ¡2.053 .092 ¡1.905 ¡2.166 ¡.215 ¡1.232 .113 ¡1.364 ¡.467 .317 .344 1.073 .471 .782 ¡.502 ¡.694 ¡.729 ¡.348
1.621 Chi-sq. 125.8
Compensatory was negative (less risk of death), we substituted the mean of Personalized and Respectful for these two variables in the equation and retained Compensatory. The fit of the equation was not significantly reduced (Table 3). The coefficient for Personalized–Respectful care was significant and positive indicating that Personalized Respectful care increased the risk of death; for a unit increase in QOC, the rate of death increased by a factor of 3.8 (Table 4, Model 2). Because the coefficients for Punitive, Controlling, and Withdrawing were all negative, we substituted the mean of the three variables for the three individual variables in the equation. The fit was not significantly reduced (Table 3). The negative coefficient for Punitive-Controlling-Withdrawing was significant, indicating that poor QOC reduced the risk of death. LTC placement was significantly related to survival (Table 4); moving the PWD from home to an LTC facility increased the rate of death by a factor of almost 5. The effect of wishful-intrapsychic coping was significant and positive; the greater this style of emotion-focused coping, the earlier the death of the PWD. Two caregiver personality traits were significant; greater caregiver Neuroticism and greater caregiver Agreeableness were associated with a reduced likelihood of care-recipient death. Among the control variables, care-recipients who were more impaired in ADLs, in poorer health, or cared for by an employed relative or an older relative had a
Sig. .000 .010 .038 .001 .009 .000 .014 .004 .532 .018 .754 .000 .237 .401 .395 .006 .271 .025 .134 .199 .037 .187
.000 df 23
Model 2: Three QOC scales eB
B
.307 4.232 1.575 6.226 .128 1.096 .149 .115 .807 .292 1.120 .256 .627 1.374 1.410 2.923 1.602 2.187 .605 .500 .483 .706
¡1.152 1.664 .465 1.761 ¡2.092 .095 ¡1.834 ¡2.117 ¡.218 ¡1.321 .074 ¡1.398 ¡.436 .337 .286 1.028
.000 .001 .028 .001 .005 .000 .015 .005 .529 .010 .834 .000 .247 .345 .470 .008
.316 5.282 1.592 5.818 .123 1.099 .160 .120 .804 .267 1.077 .247 .646 1.401 1.331 2.794
¡.510
.132
.601
5.060
1.333 ¡1.673 1.554
.003 .000 .000
3.793 .188 4.731
Sig. 000
Chi-sq. 124.4
Sig.
df 20
eB
Sig. .000
greater risk of death. Care-recipients who had had dementia longer, were cared for by their spouse, were female, or had a female caregiver had a reduced rate of death. Discussion We found that poor QOC increased the risk of LTC placement, as expected, but high QOC did not affect the likelihood of LTC placement. High QOC (i.e., Personalized Respectful care) increased the odds of death and poor QOC (Punitive Controlling Withdrawing) decreased the chances of death, the opposites of what was expected. Operant conditioning theory (Hergenhan, 1988) may help account for the effect of poor QOC on survival. Although punishment is not as effective as reinforcement for changing behavior in the long run, punishment does change behavior as long as its threat is present (e.g., Hester, Murphy, Brown, & Skilleter, 2010). Caregivers who use punishment, insistence on conformity, or withdrawal to correct behavioral problems (e.g., apathy) or ADL performance may keep the PWD more engaged and thus slow decline.
Limitations Because of their sensitive nature, the poor QOC items were potentially susceptible to underreporting by
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caregivers. Two problems with sensitive questions are: (1) Social desirability of responses in which underreporting of undesirable traits results from the desire to avoid embarrassment in the presence of an interviewer; and (2) fear of disclosure to third parties, which represents a concern about confidentiality (Tourangeau, Rips, & Rasinski, 2000). Because of the absence of an interviewer, selfadministered questions, such as those in our mail survey, should reduce underreporting of undesirable behaviors, an expectation that finds support in the literature (Schaeffer & Presser, 2003). In self-administration, however, investigators can still know the identities of those reporting undesirable behaviors, and thus it does not eliminate fear of disclosure. Although it is hoped that assurances of confidentiality will assuage this anxiety, due to the obligation to inform caregivers about the risks of participation, our consent form stated that abuse, neglect, or physical harm of the care-recipient, which we were required to report to agencies, was not protected by confidentiality. Underreporting of sensitive caregiving behavior may be relevant to the unexpected results for QOC. Caregivers (CGs) may have been reluctant to report punitive, controlling, and withdrawing care because of fear of disclosure. If CGs who engaged in the most punitive, controlling, or withdrawing care were the least likely to report such caregiving, it could produce a negative correlation between reported poor QOC and true poor QOC that could result in an inverse association between reported poor QOC and the risk of death. The wording of the most sensitive questions had been softened by the original authors to try and reduce underreporting: e.g., Felt like screaming or yelling at care recipient (CR); considered using physical restraint; considered confining CR; felt like shaking CR; and had to keep yourself from hitting or slapping CR. We do not know, however, whether this effort was successful. All caregiver and care-recipient data are from caregiver reports, including the QOC of the caregiver and care-recipient’s health and ADL. Would care-recipient reports of QOC be more valid than caregiver reports? Dooley et al. (2007) found no difference in means on the Exemplary Care scale between caregiver and care-recipient responses. They also found that the factor structure of the Exemplary Care items was not significantly different between the two groups. The care-recipients were predominantly cognitively intact. Differences between caregiver and care-recipient reports of poor QOC, however, have not been studied. Such a study would be desirable. Our sample was a convenience sample of CGs that drew volunteers from registries, patient lists, support groups, and the community. Although such sampling designs are typical for caregiving studies, they do not produce a representative sample of in-home dementia caregivers; in our case, the sample of caregivers consisted of highly educated Whites (59% had a BA degree or higher). Furthermore, our results may be representative of only caregivers participating in the health care system, research
projects, or support groups. Related to this bias, only half of the eligible caregivers fully participated in our research project. We did not have a measure of cognitive impairment (e.g., MMSE), which research has shown to be a significant predictor of LTC placement (Gaugler et al., 2003). The MMSE was not a significant predictor of survival (McClendon et al., 2006). A measure of comorbidities would be helpful for predicting LTC and survival, but it would not necessarily affect the estimated relationship between QOC and the outcomes. Our study focused on only two outcomes of caregiving. Other outcomes should be investigated. High QOC may have promoted a higher quality of life in the home for the PWD. Future studies should include a measure of quality of life, such as the Quality of Life Alzheimer’s Disease scale (Logsdon, Gibbons, McCurry, & Teri, 2002). Impairments of the PWD, such as ADL and behavioral problems, are other outcomes. High QOC may reduce the rate of decline in these outcomes. A cross-sectional design like ours is not adequate for investigating whether or not high QOC can improve such outcomes. A repeated-measures design will be needed. Quality of life, ADL, and behavioral problems should be measured at baseline and in a follow-up one year later, for example. Then, baseline measures of QOC can be used as independent variables for predicting changes in the outcomes from baseline to follow-up. Although it is important to consider the implications of findings for caregiver interventions, it is premature to recommend policy based on our unexpected findings that high QOC was related to shortened survival and did not delay LTC placement and that poor QOC lengthened the survival. Our findings need to be replicated and extended with longitudinal designs before interventions can be validly planned.
Acknowledgements We thank project managers Linda Rechlin, Nancy Catalini, Vanessa Farro, and Riane Ramsey for their outstanding assistance with recruitment, instrumentation, data entry, and other tasks. We are grateful to the Alzheimer’s Associations of Cleveland and Akron-Canton-Youngstown, and the Memory and Cognition Center, University Hospitals Case Medical Center for their assistance with recruitment. We also thank Tim Degnan, Kevin Hennosy, and Dennis Farney for their insightful comments at Aixois.
Disclosure statement No potential conflict of interest was reported by the authors.
Funding This work was supported by the Alzheimer’s Association [grant number IIRG-08-91014, 11/1/2008 10/31/2011]. Supplemental financial support was graciously provided by Alan Lerner, MD, Director, Memory and Cognition Center, University Hospitals of Cleveland Case Medical Center.
Aging & Mental Health
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L.A. Pervin (Eds.), Handbook of personality: Theory and research (3rd ed., pp. 114 158). New York, NY: Guilford. Kneebone, I.I., & Martin, P.R. (2003). Coping and caregivers of people with dementia. British Journal of Health Psychology, 8, 1 17. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer. Logsdon, R.G., Gibbons, L.E., McCurry, S.M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510 519. McClendon, M.J., & Smyth, K.A. (2013). Quality of informal care for persons with dementia: Dimensions and correlates. Aging & Mental Health, 17(8), 1003 1015. McClendon, M.J., Smyth, K.A., & Neundorfer, M.N. (2004). Survival of persons with Alzheimer’s disease: Caregiver coping matters. The Gerontologist, 44, 508 519. McClendon, M.J., Smyth, K.A., & Neundorfer, M.M. (2006). Long-term care placement and survival of persons with Alzheimer’s disease. Journal of Gerontology: Psychological Sciences, 61B, P220 P227. McCrae, R.R., & Costa, P.T. Jr. (2008). The five-factor theory of personality. In O.P. John, R.W. Robins, & L.A. Pervin (Eds.), Handbook of personality: Theory and research (3rd ed., pp. 159 181). New York, NY: Guilford Press. Mittelman, M.S., Haley, W.E., Clay, O.J., & Roth, D.L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67(9), 1592 1599. Newcomer, R., Covinsky, K.E., Clay, T., & Yaffe, K. (2003). Predicting 12-month mortality for persons with dementia. Journal of Gerontology: Social Sciences, 58B, S187 S198. Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and stress process: An overview of concepts and their measures. The Gerontologist, 30, 583 594. Pruchno, R.A., & Resch, N.L. (1989). Mental health of caregiving spouses: Coping as mediator, moderator, or main effect? Psychology and Aging, 4, 454 463. Radloff, L.S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385 401. Schaeffer, N.C., & Presser, S. (2003). The science of asking questions. Annual Review of Sociology, 29, 65 88. Stern, Y., Tang, M.X., Albert, M.S., Brandt, J., Jacobs, D.M., Bell, K., . . . Tsai, W.Y. (1997). Predicting time to nursing home care and death in individuals with Alzheimer Disease. Journal of American Medical Association, 277, 806 812. Sun, F., Durkin, D.W., Hilgeman, M.M., Harris, G., Gaugler, J. E., Wardian, J., . . . Burgio, L.D. (2013). Predicting desire for institutional placement among racially diverse dementia family caregivers: The role of quality of care. The Gerontologist, 53(3), 418 429. Teng, C., Hsu, K.-H., Chien, R.-C., & Chang, H.-Y. (2007). Influence of personality on care quality of hospital nurses. Journal of Nursing Care Quality, 22(4), 358 364. Tourangeau, R., Rips, L.J., & Rasinski, K. (2000). Editing of responses: Reporting about sensitive topics. The psychology of survey response (Chapter 9, pp. 255 288). New York, NY: Cambridge University Press. van Dijk, P.T.M., Dippel, D.W.J., & Habbema, J.D.F. (1991). Survival of patients with dementia. Journal of the American Geriatrics Society, 39, 603 610. Williamson, G.M., Shaffer, D.R., & The Family Relationships in Late Life Project. (2001). Relationship quality and potentially harmful behaviors by spousal caregivers: How we were then, how we are now. Psychology and Aging, 16, 217 222.
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Appendix 1. Items included in QOC scales Personalized care When at all possible, I make sure that CR gets to do some of the things he/she enjoys (e.g., playing cards, visiting friends, going for a walk, listening to music) I tried to arrange situations I hoped would be stimulating to my older relative (mentally or emotionally) I go out of my way to make sure CR’s birthday is a special one Before making a big decision about something that will affect CR, I talk it over with him/her first I tried to arrange my relative’s environment so that he/she could do as much by himself/herself as possible I take the time to sit and talk with CR
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Respectful care I really try to avoid interrupting CR when he/she is talking I try to soothe CR’s emotions when he/she gets upset I try to hold my anger and frustration in, to protect CR from these feelings I do everything I can to avoid making CR feel that he/she is a burden to me I avoid being overcritical of CR Compensatory care I tried to arrange my older relative’s environment to safeguard him/her against causing problems, getting into trouble, or endangering him/herself I kept a close eye on what my older relative was doing so that I could head off any problems before they developed too far I tried to do many things for my relative since he/she is no longer capable of doing them I tried to establish a set routine for my relative each day I tried to make sure my relative was able to see or touch things that were meaningful to him/her I tried to use pictures, labels, colors, or other things my relative could see to help him/her make sense of his/her environment Punitive care How often have you felt like shaking CR because of the way he/she behaved? How often have you had to keep yourself from hitting or slapping CR because of the way he/she behaved I yelled or acted enraged; it was often the only way to get my way with him/her I threatened my relative with undesirable consequences if he/she did not cooperate How often have you felt like screaming or yelling at CR? How often have you blamed CR for having created difficulties? Controlling care I tried to get my relative to agree to do certain things, or to do them in a certain way I was firm with my older relative, and insisted that he/she live up to certain expectations I have for him/her I tried to communicate to my older relative how concerned or worried I was about him/her How often have you told CR to stop doing things that caused worry because of what it did to you (or to other family members)? I asked my relative to explain why he/she was doing something, to draw his/her attention to his/her mistakes Withdrawal care I left the situation for a while when relating to my older relative got too difficult I withdrew from my older relative
ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: http://www.tandfonline.com/loi/camh20
Quality of in-home care, long-term care placement, and the survival of persons with dementia McKee J. McClendon & Kathleen A. Smyth To cite this article: McKee J. McClendon & Kathleen A. Smyth (2015) Quality of in-home care, long-term care placement, and the survival of persons with dementia, Aging & Mental Health, 19:12, 1093-1102, DOI: 10.1080/13607863.2014.1003284 To link to this article: http://dx.doi.org/10.1080/13607863.2014.1003284
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Date: 05 November 2015, At: 18:37
Aging & Mental Health, 2015 Vol. 19, No. 12, 1093 1102, http://dx.doi.org/10.1080/13607863.2014.1003284
Quality of in-home care, long-term care placement, and the survival of persons with dementia McKee J. McClendona* and Kathleen A. Smythb a
Department of Neurology, School of Medicine, Case Western Reserve University, Cleveland, OH, USA; bDepartment of Epidemiology and Biostatistics, Case Western Reserve University School of Medicine and Neurological Outcomes Center, University Hospitals of Cleveland Case Medical Center, Cleveland, OH, USA
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(Received 5 September 2014; accepted 23 December 2014) Purpose of the study: Caregivers of persons with dementia living at home adopt a variety of caregiving styles that vary in quality. Three styles of high-quality care and poor-quality care have been identified. The outcomes, however, of varying styles of caregiving are unknown. Our purpose was to investigate the linkage of quality of care to long-term care placement and survival. Design and methods: We used a sample of 148 primary caregivers of a relative living at home and needing assistance due to memory or thinking problems. We used items from four existing scales and five new items to construct measures of high-quality and poor-quality care. Long-term care and survival were determined from two follow-ups. Cox proportional hazards regression was used to estimate the relationship of quality of care to long-term care placement and survival. Results: Poor quality of care increased the risk of long-term care placement, as expected, but high-quality care was not related to placement. Surprisingly, high-quality care increased the risk of death while poor-quality care decreased the risk. Secondary results were: wishful/intrapsychic coping (a dysfunctional type of emotion-focused coping) and long-term care placement shortened the survival; and caregiver personality traits of neuroticism and agreeableness lengthened the survival. Implications: It is premature to recommend caregiver interventions based on our unexpected findings. Further studies are vital and should include care-recipient impairments and the quality of life of the person with dementia as additional outcomes. Keywords: quality of caregiving; coping; long-term care; dementia caregiving; survival
Among persons with Alzheimer’s disease or a related dementia, between 60 and 70 percent live at home where four out of five are cared for by family members (Alzheimer’s Association, 2012). Because the caregiver role is usually unanticipated, learning to become a caregiver typically occurs ‘on the job’. As a result of lack of preparation, caregivers adopt a variety of informal caregiving styles, some of which may be less than optimal or even harmful. Little is known about the consequences for the person with dementia (PWD) of the quality of care (QOC) provided by family members. Is care that is considered to be of high quality actually beneficial to the PWD, and if so, in what ways? To better understand the effectiveness of QOC in the home for the well-being of the PWD, we investigated two important outcomes, longterm care placement and survival. Quality of caregiving styles Several dimensions of high-quality care in the home have been singled out and measured: for example, the Exemplary Care scale (Burgio, Gitlin, Kirschbaum, & Schulz, 2005; Dooley, Shaffer, Lance, & Williamson, 2007), the General Caregiving scale (Farran et al., 2011), and the Encouragement and Active Management scales (Hinrichsen & Niederehe, 1994). Types of care that reflect poor QOC have also been measured, including the Potentially *Corresponding author. Email: [email protected] Ó 2015 Taylor & Francis
Harmful Behavior scale (Williamson, Shaffer, & The Family Relationships in Late Life Project, 2001), the Frustrations of Caregiving scale (Burgio et al., 2005), and the Criticism scale (Hinrichsen & Niederehe, 1994). Exemplary care, potentially harmful behavior, and adequate care (assistance with activities of daily living [ADL]) were found to be relatively independent indicating that QOC is multidimensional (Christie et al., 2009; Dooley et al., 2007). Additional differentiation of styles of caregiving in the home have been identified (McClendon & Smyth, 2013), including three types of high QOC (Personalized, Respectful, and Compensatory) and three types of poor QOC (Punitive, Controlling, and Withdrawing). Caregiver personality, coping, and quality of care Because of the lack of preparedness for the caregiving role and its attendant stress, the styles of caregiving that are adopted are likely to draw on preexisting psychosocial characteristics of the caregiver. Personality traits are deep psychological tendencies that influence habits, attitudes, skills, and relationships (McCrae & Costa, 2008). These traits help an individual adapt to the changing social environment. New caregivers may be especially likely to draw on personality traits to help them adjust to the novel demands of the role.
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The link between personality traits and QOC has been supported by several studies. A qualitative study of informal care of persons with dementia in the Netherlands found that caregiver neuroticism was related to a ‘nonaccepting’ strategy of care involving impatience, anger, and walking away (de Vugt et al., 2004). Even though hospital nurses are trained to provide for the needs of patients, the personality trait of neuroticism was related to lower responsiveness, assurance, and empathy for patients, while the trait of openness was related to greater responsiveness (Teng, Hsu, Chien, & Chang, 2007). And most recently, the six caregiving styles used by family caregivers of a PWD were extensively linked to their personality traits (McClendon & Smyth, 2013); the traits of agreeableness, neuroticism, conscientiousness, and openness were linked to higher QOC, while extraversion was associated with poorer QOC. A second factor that has influenced the caregiving styles that are adopted is the caregiver’s ability to cope with the stress of the role. Caregivers use different strategies for coping with stress, such as problem-focused coping (e.g., instrumental), emotion-focused coping (e.g., avoidance/escape), and cognitive coping (e.g., acceptance) (Lazarus & Folkman, 1984). Instrumental and acceptance coping have been found to be functional for caregiver wellbeing, whereas avoidance/escape coping has been found to be dysfunctional (e.g., Kneebone & Martin, 2003). Those who cope better should be able to provide a higher QOC. Several studies have supported this relationship. Active cognitive and active behavioral coping were correlated with greater use of the encouragement and active management styles of caregiving, while avoidance coping was correlated with greater use of the criticism style of caregiving (Hinrichsen & Niederehe, 1994). Dysfunctional coping was related to increased caregiver abuse of family members with dementia (Cooper et al., 2010). Caregivers of PWD who used wishful and fantasy coping (emotion-focused coping involving avoidance/escape) provided poor QOC more often; those who used instrumental coping provided punitive care less frequently (McClendon & Smyth, 2013). Outcomes of caregiving for PWD The outcomes of QOC for the PWD are largely unknown. A qualitative study (de Vugt et al., 2004) found that a non-adaptive style of caregiving (impatience, irritation, anger, confrontation, and withdrawal) leads to more behavioral and psychological problems than a supporting style (adapting to or stimulating the care-recipient’s abilities). Although impairments of the PWD such as these are important outcomes of caregiving, we focused on the effect of different styles of QOC on two outcomes that have not been studied, namely, long-term care (LTC) placement and survival. Long-term care placement Although there have been no studies of the effect of QOC on actual LTC placement, potentially harmful behavior
was found to be related to a greater desire to institutionalize among Caucasians and Latinos, and exemplary care was related to less desire to institutionalize among African Americans (Sun et al., 2013). LTC placement is a source of formal social support for the caregiver that may be turned to when the demands of caregiving are taxing the resources of the caregiver. Consistent with this interpretation, studies have found that greater care-recipient impairments (ADL, cognitive, behavior problems), greater caregiver stress (depression, anxiety), greater caregiver burden (e.g., feeling trapped in the role), and less caregiver social support increased the risk of LTC placement (Gaugler, Kane, Kane, Clay, & Newcomer, 2003; Gaugler, Yu, Krichbaum, & Wyman, 2009; Mittelman, Haley, Clay, & Roth, 2006). In addition, care-recipients who were White, male, older, living alone, or cared for by a caregiver who was older, male, or of high income were more likely to be placed (Gaugler, Kane, Kane, & Newcomer, 2005). The effectiveness of caregiver coping for delaying LTC placement was not supported by the few studies that investigated it. The relationship of caregiver personality traits to LTC placement has not been studied. Survival Efforts to understand variation in survival among persons with dementia have focused on the characteristics of the PWD. Factors that decrease life expectancy even without dementia (older age and male gender) and factors associated with the progression of dementia (early age of onset, cognitive impairment, duration of illness, behavioral problems, and dependency in ADL) are strongly predictive of shortened survival time (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; McClendon, Smyth, & Neundorfer, 2006; Newcomer, Covinsky, Clay, & Yaffe, 2003; Stern et al., 1997; van Dijk, Dippel, & Habbema, 1991). A few characteristics of the caregiving environment have also been linked to the survival of the PWD: wishful/intrapsychic coping (emotion-focused coping involving avoidance/ escape), the move of the PWD from in-home care to LTC, male caregiver gender, and older caregiver age were associated with shortened survival (McClendon et al., 2006); low caregiver distress (Brodaty, McGilchrist, Harris, & Peters, 1993) and the caregiver personality trait of neuroticism (McClendon & Smyth, 2013) were related to longer survival of the PWD. The impact of QOC in the home on survival has not been investigated. Study aims and design Our primary aim was to investigate the relationship of quality of in-home care to LTC placement and the survival of the PWD. We used Cox regression models to test the impact of three styles of high QOC and three styles of poor QOC on LTC placement and survival. Because personality traits and coping strategies of caregivers have been found to be related to their caregiving styles and to survival, we also included five personality traits and three coping strategies in our models to guard against obtaining biased estimates of the effects of QOC. LTC placement
Aging & Mental Health was also included in the survival model. We tested 17 additional variables as potential controls for inclusion in the models. The explanatory and control variables (caregiving, coping, personality, etc.) were assessed with a mail survey at baseline; LTC placement and death were determined approximately two years later.
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Methods Sample Our sample consisted of primary caregivers who spent more time than any other person providing day-to-day care of a relative living at home and needing assistance due to memory or thinking problems. The caregivers were volunteers from research registries, clinical trials, Alzheimer’s Association support groups, physician referrals, and the community who resided in northeast Ohio. We used the eight-item AD8 scale (Galvin et al., 2005) in a telephone screening interview of the volunteers to select those caring for a PWD. The AD8 scale is a brief, informant (caregiver)-based measure that queries whether since onset there has been an increase in cognitive problems with judgment, interest, repetitiveness, learning, naming the month, financial affairs, remembering appointments, and thinking or memory. The AD8 had excellent discrimination between cognitively normal persons and those with very mild dementia as evaluated by the Clinical Dementia Rating scale (Galvin et al., 2005). For each item, those who reported an increase in problems were asked whether it was ‘some increase’ or ‘a great increase’; each item was coded 0 D no increase, 1 D some increase, and 2 D a great increase. After summing the items, a total score of 3 was used as the cut-off. The AD8 and selection criteria are described fully in McClendon and Smyth (2013). Those who were found eligible in the screening interview and agreed to participate were mailed a questionnaire and consent forms that were approved by our Institutional Review Board. In the questionnaire, the caregiver reported on their experiences with caregiving, their health, and various demographics. All information collected in the study about the care-recipients was based on caregiver reports in the questionnaire and in brief followups on LTC and survival.
Long-term care and survival We conducted two mail follow-ups to determine whether the PWD had been placed in LTC and/or was deceased. The first was carried out one year after the collection of all baseline data and the second follow-up was carried out one year after completion of the first follow-up for PWD who were not reported to be deceased on the first followup. Caregivers who did not return their questionnaires were contacted by telephone to determine LTC placement and death. We defined LTC as either a nursing home or an assisted living facility. The validity of including assisted living in the definition is discussed by McClendon et al. (2006).
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Measures of quality of caregiving High QOC We chose several existing scales that had not been previously analyzed together. We adopted the 14-item Exemplary Care scale (Burgio et al., 2005): e.g., I really try to avoid interrupting [care-recipient] when he/she is talking; and I actively avoid treating [care-recipient] like a child. To measure environmental support, we used five items from the Active Management subscale of the Dementia Management Strategies scale (Hinrichsen & Niederehe, 1994), augmented with five new items: e.g., I arranged my relative’s environment so that he/she could do as much by himself/herself as possible; and I made sure my relative was able to see or touch things that were meaningful to him/her. Poor QOC We used the eight-item Frustrations of Caregiving scale (Burgio et al., 2005): e.g., I felt like screaming or yelling at [care-recipient]; and I blamed [care-recipient] for having created difficulties. We also included the nine items from the Criticism subscale of the Dementia Management Strategies scale: e.g., I criticized or scolded my older relative to try to prompt better behavior from him/her; and I withdrew from my relative. The scales were adapted for our study by giving all of the items the same response scale: 0 D never, 1 D seldom, 2 D sometimes, 3 D often, and 4 D always. Caregiver personality The 44-item Big Five Inventory (John, Naumann, & Soto, 2008) was used to measure the five personality traits that constitute the dominant model of personality. The Big Five model consists of: Neuroticism (anxiety, hostility, depression, vulnerability), Extraversion (warmth, gregariousness, assertiveness), Openness to experience (aesthetics, feelings, ideas, values), Agreeableness (trust, altruism, compliance, modesty), and Conscientiousness (competence, order, dutifulness, achievement striving). Caregivers were asked to respond to 44 statements (e.g., I see myself as someone who is talkative) on a five-point scale (1 D disagree strongly, . . ., 5 D agree strongly). Each trait (Openness [10 items], Conscientiousness [9 items], Extraversion [8 items], Agreeableness [9 items], and Neuroticism [8 items]) was scored as the mean of the items giving a possible range of 1 5. Caregiver coping Styles of coping were assessed with three subscales (McClendon, Smyth, & Neundorfer, 2004) from the 16item scale of Pruchno and Resch (1989): Instrumental coping (five items, e.g., Made a plan of action and followed it.); Acceptance coping (four items, e.g., Made the best of it.); and wishful/intrapsychic coping (seven items, e.g., Wished you could change the way you felt; and Told yourself things to help you feel better). Responses were coded 0 D never, 1 D seldom, 2 D sometimes, 3 D often,
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and 4 D always. The subscales were scored as the mean of the items and had a possible range of 0 4.
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Other measures Seventeen potential control variables were included; variables that have been found to be related to one or both outcomes or to the caregiving styles, or variables that we believed would be related to the outcomes. Activities of daily living The degree of care-recipient needs for assistance with basic and instrumental ADL was assessed with 15 items from the Multidimensional Functional Assessment questionnaire (Fillenbaum & Smyer, 1981) (e.g., Is [carerecipient] able to get in and out of bed?), each scored on a three-point scale (0 D yes, with no help; 1 D yes, with some help; 2 D no). The ADL scale was scored as the mean of the items and had a possible range of 0 2. Caregiver depression We used the 20-item Center for Epidemiological Studies Depression scale (CES-D; Radloff, 1977) that asked how often during the past week the respondent felt a certain way (e.g., I was bothered by things that don’t usually bother me). Items were scored from 0 ( .05. The six QOC scales, the three coping scales, and the five personality scales were included in both models (plus LTC placement in the survival model) but were not included in the stepwise removal of variables. Under the proportional-hazards assumption, a significant (p .05 in this study) positive regression coefficient indicates that a unit increase in the covariate is associated with an increase in the risk of death, which is assumed to be the same across all time points. We tested this assumption by computing the correlation between the natural log of time to death and the Schoenfeld residual of each covariate for both those placed in LTC and those deceased. A significant correlation indicated a nonproportional effect that we modeled by including an interaction term for the covariate and time to death in the regression equation. Results Sample characteristics Of 298 caregivers living in northeast Ohio who were selected in our screening interview, 97 (32.6%) refused to participate, 53 (17.8%) did not return the consent form or the questionnaire, and 148 (49.7%) returned completed questionnaires and signed consent forms. Table 1 gives the means and SDs for all variables and Cronbach’s alpha for the scales of the 148 participating caregivers and carerecipients. Of those 148 dyads, 81% resided in the Cleveland area; 91% were White and 9% were African-American; 62% of the caregivers and 55% of the care-recipients were female; 76% of the caregivers were the spouse of the care-recipient; 29% of the caregivers were employed; the mean caregiver health (2.4) and care-recipient health (2.8) were between very good and good; the mean caregiver and care-recipient ages were 69 and 77, respectively; and the mean years since onset of dementia at baseline was 6.3. Long-term care and survival We conducted a follow-up one year after the baseline survey and a second follow-up one year after the first to determine LTC placement and death. The response rate was 98.6% to the first follow-up and 90.0% to the second. At the completion of the second follow-up, 45 PWD were known to be deceased and 58 were living in an LTC facility (nursing home or assisted living) either currently or at the time of their death (Table 1). The mean years since onset of dementia until LTC placement and death were 7.8 and 9.5, respectively.
Aging & Mental Health Table 1. Means, standard deviations, and values of Cronbach alpha.
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Mean
SD Alpha
CR years till LTC (n D 58) 7.827 2.961 CR years till death (n D 45) 9.546 3.830 CR years of dementia 6.281 3.653 CR ADL (0 2) .872 .490 CR NPI (0 3) .681 .467 CR health (1 excellent, . . ., 5 poor) 2.757 .994 CG health (1 excellent, . . ., 5 poor) 2.372 .867 CG employed (1 yes, 0 no) .291 .456 CG-CR race (1 White, 0 African-American) .912 .430 CG spouse (1 yes, 0 no) .757 .284 CG-CR income ($1000s) 64.357 42.898 CG age (years) 68.991 11.818 CR age (years) 77.020 9.259 CG gender (1 female, 0 male) .622 .487 CR gender (1 female, 0 male) .554 .499 CG CES-D (0 60) 10.858 9.915 CG role captivity (1 4) 2.025 .854 CG role overload (1 4) 2.311 .820 CG expressive social support (1 5) 4.220 .718 Extraversion trait (1 5) 3.363 .771 Agreeableness trait (1 5) 4.306 .525 Conscientiousness trait (1 5) 4.204 .553 Neuroticism trait (1 5) 2.609 .764 Openness trait (1 5) 3.845 .631 Instrumental coping (1 5) 3.381 .678 Acceptance coping (1 5) 4.071 .638 Wishful–intrapsychic coping (WIC) (1 5) 2.674 .700 Personalized caregiving (0 4) 3.034 .651 Respectful caregiving (0 4) 3.080 .701 Compensatory caregiving (0 4) 2.854 .789 Punitive caregiving (0 4) .459 .478 Controlling caregiving (0 4) 1.554 .760 Withdrawing caregiving (0 4) 1.206 .808
.95 .79
.89 .86 .82 .88 .82 .74 .70 .80 .77 .80 .72 .70 .82 .71 .76 .76 .82 .54
CG D caregiver, CR D care-recipient.
Quality of care After dropping one item due to little variance (considered using physical restraint), we conducted an exploratory factor analysis (principal components with orthogonal rotation) of the 40 remaining items. The scree plot indicated that four factors might exist. But because the items came from multiple sources and had not previously been factored together, we elected to examine five- and six-factor solutions as well. We chose the six-factor model because it provided the most meaningful factors (McClendon & Smyth, 2013). An item was retained in a scale only if its primary loading was at least .10 greater than its largest secondary loading. After conducting a second-factor analysis for the 30 items that met this criterion, the same six factors were obtained. Six QOC scales were created from the items that loaded on the six factors (McClendon & Smyth, 2013): (1) Personalized Caregiving was constructed from six items that showed caregiver efforts to promote meaningful activities that reflected the individuality and
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preferences of the care-recipient and that facilitated the autonomy of the care-recipient; (2) Respectful Caregiving was constructed from five items that involved caregiver efforts to avoid treating the care-recipient in a disrespectful or judgmental manner; (3) Compensatory Caregiving was constructed from six items that represented efforts by the caregiver to environmentally and personally compensate for the impairments of the persons with dementia; (4) Punitive Caregiving was constructed from six items that indicated the caregiver was expressing anger in a punitive fashion that did not take into account the limitations of the persons with dementia; (5) Controlling Caregiving was constructed from five items that reflected caregiver efforts to control the behavior of the PWD by imposing conformity and limiting autonomy; (6) Withdrawing Caregiving was constructed from two items that indicated the caregiver withdrew or left when caregiving became too frustrating. Appendix 1 lists the items included in each scale. Cronbach’s alpha (Table 1) was good for each scale except Withdrawing. Withdrawing was retained in the analyses because its face value was distinctly different than the Punitive and Controlling styles. Each scale was scored as the mean of the items giving a possible range of 0 4. Their means (Table 1) indicated that Personalized, Respectful, and Compensatory were the most often reported styles of caregiving, followed by Controlling, Withdrawing, and Punitive. Long-term care placement We estimated a Cox regression model for time to LTC placement that contained six QOC variables, three coping variables, five personality trait variables, and 17 potential control variables, for a total of 31 covariates. To simplify the model, we then conducted a backward stepwise regression to determine which of the 17 control variables could be removed without significantly reducing the fit of the model (p > .05 for removal). The reduced model contained two of the 17 control variables (years of dementia and ADL) plus the QOC, coping, and personality variables for a total of 16 covariates (Table 2, Model 1). None of the tests for nonproportional hazards were significant and thus the results we report are for the proportional hazards models. Of the Cox regression coefficients (B) for the six QOC scales, only the coefficient for Withdrawing was statistically significant (Table 2, Model 1). The positive coefficient indicates that the greater the Withdrawing style of caregiving, the greater was the risk of LTC placement. The hazard ratio (eB) indicates that for a unit increase in Withdrawing the rate of placement increases by a factor of 1.5 (50%). Although the estimated coefficients for Punitive, Controlling, and Withdrawing (¡.085, .274, and .433, respectively) differ from one another, we conducted a test to determine whether they were significantly different. We created a composite scale equal to the mean of the three poor QOC scales [(Punitive C Controlling C Withdrawing)/3] and entered it in the regression equation in place of the three variables. We also created a scale for high
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Table 2. Cox regression coefficients for time to LTC placement after stepwise deletion of fifteen potential control variables.
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Model 1: Six QOC scales
CR years of dementia CR ADL (0–2) Extraversion trait (1 5) Agreeableness trait (1 5) Conscientiousness trait (1 5) Neuroticism trait (1 5) Openness trait (1 5) Instrumental coping (0 4) Acceptance coping (0 4) Wishful–intrapsychic coping (WIC) (0 4) Personalized caregiving (0 4) Respectful caregiving (0 4) Compensatory caregiving (0 4) Punitive caregiving (0 4) Controlling caregiving (0 4) Withdrawing caregiving (0 4) High QOC (0 4) Poor QOC (0 4) Entire model
Model 2: Six QOC scales
B
Sig.
eB
B
Sig.
eB
¡.862 1.783 ¡.292 ¡.342 ¡.193 ¡.199 .051 .145 ¡.565 .144 .258 .232 ¡.260 ¡.085 .274 .433
.000 .000 .265 .276 .509 .427 .861 .570 .028 .610 .426 .347 .349 .821 .270 .033
.422 5.945 .746 .710 .824 .820 1.053 1.157 .568 1.155 1.294 1.261 .771 .919 1.315 1.542
¡.825 1.488 ¡.343 ¡.338 ¡.142 ¡.200 .095 .183 ¡.570 .111
.000 .000 .180 .287 .629 .415 .744 .458 .026 .692
.438 4.426 .710 .713 .867 .819 1.100 1.200 .566 1.117
.300 .748
.370 .027
1.351 2.114
df 12
Sig. .000
Chi-sq. 120.5
df 16
QOC equal to the mean of Personalized, Respectful, and Compensatory and substituted it for the three high QOC variables to test whether or not the coefficients of the high QOC variables were significantly different. The coefficient for the poor QOC scale was positive and significant (Table 2, Model 2). The inclusion of the poor QOC scale in place of Punitive, Controlling, and Withdrawing did not significantly reduce the fit of the model (Table 3). Therefore, we could not conclude that the coefficients for Punitive, Controlling, and Withdrawing were significantly different and we could use a single composite scale for poor QOC without harming the fit of the model. Instead of pointing to one or another of the three scales as most important (i.e., Withdrawing), we concluded that the greater the poor QOC, the greater was the risk of LTC placement; more precisely, for a unit increase in poor QOC, the rate of placement increases by a factor of about 2 (eB). The inclusion of the high QOC scale in place of Personalized, Respectful, and Compensatory also did not significantly reduce the fit of the model (Table 3). However, the coefficient for the high QOC scale was not significantly different from zero (Table 2, Model 2). Among the coping variables, the coefficient for Acceptance coping was negative and significant in both models, which indicated that the greater the use of
Sig. 000
Chi-sq. 117.1
Acceptance coping, the less likely was the PWD to move to LTC. The two control variables were both significant: the greater the need for ADL assistance, the more likely was LTC placement; and the longer the PWD had had dementia, the less was the risk of placement. Survival We first estimated a Cox regression model for time to death that contained the same covariates that were used for LTC, plus a dummy variable for whether or not the PWD had been placed in LTC for a total of 32 covariates. We then conducted a backward stepwise regression to determine which of the 17 potential control variables could be removed (p > .05 for removal). The reduced model contained eight control variables plus the 15 target variables (including LTC placement) for a total of 23 covariates. None of the tests for nonproportional hazards were significant. Two QOC styles were significantly related to survival (Table 4, Model 1); the greater the Respectful caregiving, the shorter the expected survival and the greater the Controlling caregiving, the longer the expected survival. Because the coefficients for Personalized and Respectful were both positive (greater risk of death) whereas that for
Table 3. Tests of equality of regression coefficients for quality of care variables. Outcome
Null hypothesis: equal regression coefficients (B)
Long-term care Long-term care Death Death
Personalized, Conscientiousness, Instrumental Punitive, Controlling Withdrawal Personalized, Conscientiousness Punitive, Controlling Withdrawal
Chi-squared
df
Sig.
Null hypothesis decision
1.840 1.491 .271 .884
2 2 1 2
.399 .475 .602 .643
Do not reject Do not reject Do not reject Do not reject
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Table 4. Cox regression coefficients for time to death of PWD after stepwise deletion of ten potential control variables. Model 1: Six QOC scales
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B CR years of dementia CR ADL (0 2) CR health (1 excellent, . . ., 5 poor) CG employed (1 yes, 0 no) CG spouse (1 yes, 0 no) CG age (years) CG gender (1 female, 0 male) CR gender (1 female, 0 male) Extraversion trait (1 5) Agreeableness trait (1 5) Conscientiousness trait (1 5) Neuroticism trait (1 5) Openness trait (1 5) Instrumental coping (0 4) Acceptance coping (0 4) Wishful–intrapsychic coping (WIC) (0 4) Personalized caregiving (0 4) Respectful caregiving (0 4) Compensatory caregiving (0 4) Punitive caregiving (0 4) Controlling caregiving (0 4) Withdrawal caregiving (0 4) Personalized-respectful caregiving Poor QOC (0 4) LTC placement Fit of entire model
¡1.180 1.443 .454 1.829 ¡2.053 .092 ¡1.905 ¡2.166 ¡.215 ¡1.232 .113 ¡1.364 ¡.467 .317 .344 1.073 .471 .782 ¡.502 ¡.694 ¡.729 ¡.348
1.621 Chi-sq. 125.8
Compensatory was negative (less risk of death), we substituted the mean of Personalized and Respectful for these two variables in the equation and retained Compensatory. The fit of the equation was not significantly reduced (Table 3). The coefficient for Personalized–Respectful care was significant and positive indicating that Personalized Respectful care increased the risk of death; for a unit increase in QOC, the rate of death increased by a factor of 3.8 (Table 4, Model 2). Because the coefficients for Punitive, Controlling, and Withdrawing were all negative, we substituted the mean of the three variables for the three individual variables in the equation. The fit was not significantly reduced (Table 3). The negative coefficient for Punitive-Controlling-Withdrawing was significant, indicating that poor QOC reduced the risk of death. LTC placement was significantly related to survival (Table 4); moving the PWD from home to an LTC facility increased the rate of death by a factor of almost 5. The effect of wishful-intrapsychic coping was significant and positive; the greater this style of emotion-focused coping, the earlier the death of the PWD. Two caregiver personality traits were significant; greater caregiver Neuroticism and greater caregiver Agreeableness were associated with a reduced likelihood of care-recipient death. Among the control variables, care-recipients who were more impaired in ADLs, in poorer health, or cared for by an employed relative or an older relative had a
Sig. .000 .010 .038 .001 .009 .000 .014 .004 .532 .018 .754 .000 .237 .401 .395 .006 .271 .025 .134 .199 .037 .187
.000 df 23
Model 2: Three QOC scales eB
B
.307 4.232 1.575 6.226 .128 1.096 .149 .115 .807 .292 1.120 .256 .627 1.374 1.410 2.923 1.602 2.187 .605 .500 .483 .706
¡1.152 1.664 .465 1.761 ¡2.092 .095 ¡1.834 ¡2.117 ¡.218 ¡1.321 .074 ¡1.398 ¡.436 .337 .286 1.028
.000 .001 .028 .001 .005 .000 .015 .005 .529 .010 .834 .000 .247 .345 .470 .008
.316 5.282 1.592 5.818 .123 1.099 .160 .120 .804 .267 1.077 .247 .646 1.401 1.331 2.794
¡.510
.132
.601
5.060
1.333 ¡1.673 1.554
.003 .000 .000
3.793 .188 4.731
Sig. 000
Chi-sq. 124.4
Sig.
df 20
eB
Sig. .000
greater risk of death. Care-recipients who had had dementia longer, were cared for by their spouse, were female, or had a female caregiver had a reduced rate of death. Discussion We found that poor QOC increased the risk of LTC placement, as expected, but high QOC did not affect the likelihood of LTC placement. High QOC (i.e., Personalized Respectful care) increased the odds of death and poor QOC (Punitive Controlling Withdrawing) decreased the chances of death, the opposites of what was expected. Operant conditioning theory (Hergenhan, 1988) may help account for the effect of poor QOC on survival. Although punishment is not as effective as reinforcement for changing behavior in the long run, punishment does change behavior as long as its threat is present (e.g., Hester, Murphy, Brown, & Skilleter, 2010). Caregivers who use punishment, insistence on conformity, or withdrawal to correct behavioral problems (e.g., apathy) or ADL performance may keep the PWD more engaged and thus slow decline.
Limitations Because of their sensitive nature, the poor QOC items were potentially susceptible to underreporting by
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caregivers. Two problems with sensitive questions are: (1) Social desirability of responses in which underreporting of undesirable traits results from the desire to avoid embarrassment in the presence of an interviewer; and (2) fear of disclosure to third parties, which represents a concern about confidentiality (Tourangeau, Rips, & Rasinski, 2000). Because of the absence of an interviewer, selfadministered questions, such as those in our mail survey, should reduce underreporting of undesirable behaviors, an expectation that finds support in the literature (Schaeffer & Presser, 2003). In self-administration, however, investigators can still know the identities of those reporting undesirable behaviors, and thus it does not eliminate fear of disclosure. Although it is hoped that assurances of confidentiality will assuage this anxiety, due to the obligation to inform caregivers about the risks of participation, our consent form stated that abuse, neglect, or physical harm of the care-recipient, which we were required to report to agencies, was not protected by confidentiality. Underreporting of sensitive caregiving behavior may be relevant to the unexpected results for QOC. Caregivers (CGs) may have been reluctant to report punitive, controlling, and withdrawing care because of fear of disclosure. If CGs who engaged in the most punitive, controlling, or withdrawing care were the least likely to report such caregiving, it could produce a negative correlation between reported poor QOC and true poor QOC that could result in an inverse association between reported poor QOC and the risk of death. The wording of the most sensitive questions had been softened by the original authors to try and reduce underreporting: e.g., Felt like screaming or yelling at care recipient (CR); considered using physical restraint; considered confining CR; felt like shaking CR; and had to keep yourself from hitting or slapping CR. We do not know, however, whether this effort was successful. All caregiver and care-recipient data are from caregiver reports, including the QOC of the caregiver and care-recipient’s health and ADL. Would care-recipient reports of QOC be more valid than caregiver reports? Dooley et al. (2007) found no difference in means on the Exemplary Care scale between caregiver and care-recipient responses. They also found that the factor structure of the Exemplary Care items was not significantly different between the two groups. The care-recipients were predominantly cognitively intact. Differences between caregiver and care-recipient reports of poor QOC, however, have not been studied. Such a study would be desirable. Our sample was a convenience sample of CGs that drew volunteers from registries, patient lists, support groups, and the community. Although such sampling designs are typical for caregiving studies, they do not produce a representative sample of in-home dementia caregivers; in our case, the sample of caregivers consisted of highly educated Whites (59% had a BA degree or higher). Furthermore, our results may be representative of only caregivers participating in the health care system, research
projects, or support groups. Related to this bias, only half of the eligible caregivers fully participated in our research project. We did not have a measure of cognitive impairment (e.g., MMSE), which research has shown to be a significant predictor of LTC placement (Gaugler et al., 2003). The MMSE was not a significant predictor of survival (McClendon et al., 2006). A measure of comorbidities would be helpful for predicting LTC and survival, but it would not necessarily affect the estimated relationship between QOC and the outcomes. Our study focused on only two outcomes of caregiving. Other outcomes should be investigated. High QOC may have promoted a higher quality of life in the home for the PWD. Future studies should include a measure of quality of life, such as the Quality of Life Alzheimer’s Disease scale (Logsdon, Gibbons, McCurry, & Teri, 2002). Impairments of the PWD, such as ADL and behavioral problems, are other outcomes. High QOC may reduce the rate of decline in these outcomes. A cross-sectional design like ours is not adequate for investigating whether or not high QOC can improve such outcomes. A repeated-measures design will be needed. Quality of life, ADL, and behavioral problems should be measured at baseline and in a follow-up one year later, for example. Then, baseline measures of QOC can be used as independent variables for predicting changes in the outcomes from baseline to follow-up. Although it is important to consider the implications of findings for caregiver interventions, it is premature to recommend policy based on our unexpected findings that high QOC was related to shortened survival and did not delay LTC placement and that poor QOC lengthened the survival. Our findings need to be replicated and extended with longitudinal designs before interventions can be validly planned.
Acknowledgements We thank project managers Linda Rechlin, Nancy Catalini, Vanessa Farro, and Riane Ramsey for their outstanding assistance with recruitment, instrumentation, data entry, and other tasks. We are grateful to the Alzheimer’s Associations of Cleveland and Akron-Canton-Youngstown, and the Memory and Cognition Center, University Hospitals Case Medical Center for their assistance with recruitment. We also thank Tim Degnan, Kevin Hennosy, and Dennis Farney for their insightful comments at Aixois.
Disclosure statement No potential conflict of interest was reported by the authors.
Funding This work was supported by the Alzheimer’s Association [grant number IIRG-08-91014, 11/1/2008 10/31/2011]. Supplemental financial support was graciously provided by Alan Lerner, MD, Director, Memory and Cognition Center, University Hospitals of Cleveland Case Medical Center.
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Appendix 1. Items included in QOC scales Personalized care When at all possible, I make sure that CR gets to do some of the things he/she enjoys (e.g., playing cards, visiting friends, going for a walk, listening to music) I tried to arrange situations I hoped would be stimulating to my older relative (mentally or emotionally) I go out of my way to make sure CR’s birthday is a special one Before making a big decision about something that will affect CR, I talk it over with him/her first I tried to arrange my relative’s environment so that he/she could do as much by himself/herself as possible I take the time to sit and talk with CR
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Respectful care I really try to avoid interrupting CR when he/she is talking I try to soothe CR’s emotions when he/she gets upset I try to hold my anger and frustration in, to protect CR from these feelings I do everything I can to avoid making CR feel that he/she is a burden to me I avoid being overcritical of CR Compensatory care I tried to arrange my older relative’s environment to safeguard him/her against causing problems, getting into trouble, or endangering him/herself I kept a close eye on what my older relative was doing so that I could head off any problems before they developed too far I tried to do many things for my relative since he/she is no longer capable of doing them I tried to establish a set routine for my relative each day I tried to make sure my relative was able to see or touch things that were meaningful to him/her I tried to use pictures, labels, colors, or other things my relative could see to help him/her make sense of his/her environment Punitive care How often have you felt like shaking CR because of the way he/she behaved? How often have you had to keep yourself from hitting or slapping CR because of the way he/she behaved I yelled or acted enraged; it was often the only way to get my way with him/her I threatened my relative with undesirable consequences if he/she did not cooperate How often have you felt like screaming or yelling at CR? How often have you blamed CR for having created difficulties? Controlling care I tried to get my relative to agree to do certain things, or to do them in a certain way I was firm with my older relative, and insisted that he/she live up to certain expectations I have for him/her I tried to communicate to my older relative how concerned or worried I was about him/her How often have you told CR to stop doing things that caused worry because of what it did to you (or to other family members)? I asked my relative to explain why he/she was doing something, to draw his/her attention to his/her mistakes Withdrawal care I left the situation for a while when relating to my older relative got too difficult I withdrew from my older relative
