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a Department of Health Services, VA Puget Sound Health Care System, Seattle, WA
b Department of Healthcare Management, Carlson School of Management, Minneapolis, MN
Correspondence: Jane B. Tornatore, PhD, Screen Inc., 8017H 8th Avenue South, Seattle, WA 98108. E-mail: j.tornatore{at}attbi.com.
Decision Editor: Laurence G. Branch, PhD
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Abstract |
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Key Words: Dementia • Family caregiver • Stress • Nursing home • Special care unit
Because of the heavy burden associated with caregiving for persons with Alzheimer's disease and related dementia, many families eventually institutionalize their relative (Pushkar Gold, Feldman Reis, Markiewicz, and Andres 1995
). Family caregiver burden usually does not end after institutional placement because most families continue their commitment to the caregiver role in the nursing home (Duncan and Morgan 1994; Keefe and Fancey 2000; Monahan 1995; Murphy et al. 2000; Vinton and Mazza 1994; Zarit and Whitlatch 1992). This exploratory study applies systems and stress theoretical perspectives to identify factors associated with family caregiver burden after nursing home placement of a demented relative.
Different models of stress theory exist (e.g., Hill 1958; Krause 1990; Lawton, Moss, Kleban, Glicksman, and Rovine 1991; Pearlin, Mullan, Semple, and Skaff 1990). Among these, Hill's ABC-X model offers the clearest conceptualization of the influence of structural factors, extrafamilial resources, resource strains, and family caregiver perceptions on stress outcomes such as caregiver burden, which are the focus of this article. Under the rubric of general systems theory, the family stress ABC-X model provides a framework for examining factors that mediate an individual family member's ability to cope with a stress-producing event or situation (Biegel, Song, and Milligan 1995; Boss 1988; Hill 1958; Vinton and Mazza 1994). We expand on the ABC-X model of family stress to examine the relationship between burden and family caregiver characteristics, characteristics of the institutionalized relative, resource strains, organizational resources of the nursing home, and caregiver perceptions of nursing home care. Our expanded version of Hill's model incorporates factors that have not been examined in previous research using the ABC-X model. In the original model (Hill 1958), Factor A is the stressor; Factor B, the resources available to the family member; Factor C, the perceptions of the family member; and Factor X, the outcome or state of functioning after the stressful event. We take a systems-oriented contextual approach to look at A, characteristics of the caregivers and their institutionalized relative; B, resources in the form of extrafamilial systems, as well as resource strains; and C, family member perceptions. Fig. 1 shows our overall conceptual framework. We view burden of caregiving not as a single event, but as a situational mixture of circumstances, experiences, responses, and resources, the combination of which affects burden after nursing home placement.
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Resource strains and resources were represented by Factor B. Resource strains are aspects of the caregiver's life with the potential to drain coping resources. Resource strains diminish the positive effect of a coping resource on outcome. We included travel distance from home to nursing home, length of time involved in caregiving before institutionalization, and visitation frequency as potential resource strains in our model. Factor B also encompassed resources outside the family system that enable family members to cope with the stress of caregiving in the nursing home. Extrafamilial resources examined in our model were related to organizational attributes of the nursing home such as geographic location, ownership status, unit type, and unit designation.
Nursing facilities in the United States are evolving toward greater diversification in the range of services provided and types of residents served. Increasingly, facilities admit residents to different unit types (e.g., Alzheimer's unit, rehabilitation unit, or subacute unit) on the basis of resident care needs. Unit type refers to the operational and environmental characteristics of the nursing unit where the relative with dementia is housed. An empirical typology of unit types serving persons with Alzheimer's disease developed by Grant 1998 was used to classify units as custodial versus other type. We selected custodial units for this analysis because they provide the fewest dementia-oriented services of all unit types. Unit designation was based on self-report and referred to whether a unit was identified as a dementia special care unit (SCU) or a traditional (non-SCU) unit. We hypothesized that lack of organizational resources (represented by custodial units) and provision of dementia-oriented services (represented by SCU designation) would be related to levels of caregiver burden.
Factor C was defined as the primary family caregiver's perceptions of the stressful situation. Family caregiver perceptions were operationalized in terms of how involved caregivers perceived themselves to be in the care of their relative and their overall expectations about the care their relative received in the nursing home.
Caregiver burden was Factor X, or the outcome, in our model. According to Stull, Kosloski, and Kercher 1994, burden taps a unique domain not represented by more objective indicators of caregiver stress. Burden is a sign that caregivers may need more support and/or professional assistance (Mangone et al. 1993).
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). The evaluation of family caregiver outcomes was not a primary goal of that study, so the analysis presented below is a secondary analysis of an existing data set. Resident and family caregiver data were collected from 100 units in 38 skilled nursing facilities in Minnesota. The size of nursing facilities in our sample ranged from 65 beds to 490 beds. Average facility size for the respondents in our sample was 180 beds. Unit size ranged from 16 beds to 79 beds. Average unit size for the respondents in our sample was 40 beds.
We used a two-stage sampling design. At the first stage, 334 nursing units in 123 Minnesota nursing homes were stratified to represent a sixfold typology of dementia units developed by Grant 1998. One hundred units were randomly drawn to represent the six unit types. At the second stage, we randomly selected dementia residents from these 100 units. Custodial units composed only 6.3% of our sample of 334 units and residents in these units composed 6.5% of our final sample. SCUs composed 17% of these units, and 30% of the residents in the final sample were in an SCU. Because our primary interest was in comparing dementia resident outcomes between SCUs and non-SCUs, we sampled a higher proportion of SCU residents. For each of 464 residents sampled, the most involved family member for that resident (corroborated by staff and facility records) was interviewed by phone using a closed-ended questionnaire that took on average one half hour to complete. Seventy-two residents had no living family member; only a friend, attorney, or other legal guardian could be identified. These 72 residents were deemed ineligible for this analysis as the legal guardians' involvement in the nursing home and knowledge of residents were limited. Of the 392 dementia residents with living relatives, 31 family members could not be contacted, and 4 caregivers refused the interview. This further reduced the sample size to 357 family caregivers, or a response rate of 91%. Resident data and organizational data were gathered through nurse informant interviews, interviews with other nursing home staff, and a review of facility records. If data were missing at the organizational level or for the family member or their institutionalized relative, those observations (N = 81) had to be dropped (because there were too many missing items in a scale or discrete items were used that could not be prorated). This procedure resulted in a final sample size of 276 resident–caregiver pairs with complete data. Family members dropped from the analysis differed from those retained in the analysis in several ways. They were less likely to be daughters or older and more likely to be retired. Also, their institutionalized relative was more likely to be in an SCU and have a longer length of stay.
Measures
Our dependent measure was derived from the work of Montgomery (National Coordinating Center 1991). Her scale is unique in that it focuses on burden among caregivers with demented relatives in nursing homes after institutionalization (Montgomery 1994). The Burden scale assesses subjective feelings of how the caregiving situation has changed since the relative went into the nursing home. Ten Likert-type scale items with response choices ranging from "a lot less" to "a lot more" make up the scale (Cronbach's coefficient 
= .90). Questions include "Since your relative came to the nursing home do you find that you have: ‘time to do your own work and daily chores’ and ‘tension in your life.’" Possible scores range from 10 to 50; high scores represent more burden.
Five demographic caregiver characteristics were included as independent variables: (a) type of relationship (three dummy variables representing spouse, son, or daughter vs other relative); (b) age (continuous); (c) education (6-point measure ranging from 1 = less than 8 years to 6 = postcollege); (d) marital status (1 = married, 0 = not married); and (e) employment status (1 = working full time, 2 = working part time, 3 = unemployed/retired/homemaker).
We examined two resident characteristics: (a) length of stay in the nursing home (days) and (b) the Functional Assessment Staging Technique (FAST; Reisberg, Sclan, Franssen, Kluger, and Ferris 1994). FAST scores (Reisberg 1988) were used to determine a resident's stage of dementia. This measure is a 16-item hierarchical scale designed to measure progressive functional deterioration in Alzheimer's disease (Auer, Sclan, Yaffee, and Reisberg 1994). Reisberg and colleagues report high estimates of interrater reliability (r = .83) and construct validity (r = .99). Scores can range from 1 to 16; higher FAST scores represent more advanced stages of Alzheimer's disease.
We used three variables to assess caregiver resource strains: (a) distance from caregiver residence to nursing home (5-point measure ranging from 1 = same city to 5 = different city 60 or more miles away), (b) frequency of visitation (8-point measure ranging from 1 = visit less than once a year to 8 = visit daily), and (c) length of time involved in giving direct care prior to nursing home placement (6 point measure ranging from 1 = never before involved to 6 = involved for over 5 years).
Four organizational variables were examined: ownership status (0 = nonprofit, 1 = for profit), geographic location (1 = rural, 0 = urban), SCU designation (1 = SCU, 0 = non-SCU), and custodial unit type (1 = custodial unit, 0 = noncustodial unit). SCU versus non-SCU designation was based on self-report. Custodial units are a unit type without dementia-oriented attributes. They are geared to the needs of high-functioning, cognitively intact residents. None of the custodial units had an SCU designation. The correlation between SCU designation and custodial units was low (r = -.18). Although most SCUs consisted of a single unit type, SCU designation does not connote a homogenous unit type as SCUs differ in the degree to which they are tailored to dementia (Grant 1998; Grant and Ory 2000). Furthermore, research has found that many non-SCUs provide quality of care comparable to SCUs (Chappell and Reid 2000).
Variables describing family caregiver perceptions focused on two dimensions, caregiver involvement and expectations, and are based on instruments developed by Montgomery (National Coordinating Center 1991). Involvement entailed two dimensions: involvement in the nursing home (Cronbach's coefficient = .76) and involvement with hands-on care (Cronbach's coefficient = .76). Each scale consists of four items with 5-point Likert-type responses of "never," "rarely," "sometimes," "often," and "frequently." Questions for involvement in the nursing home include "How often in the past month have you engaged in participating in a care plan meeting with staff members?" and "How often in the past month have you engaged in attending a training session or seminar for families?" Involvement with hands-on care includes questions such as "How often in the past month have you engaged in directly providing care for your relative by assisting with feeding, clothing, toileting, or bathing?" Family Caregiver Expectations is a 14-item scale using 5-point Likert-type responses (Cronbach's coefficient = .74). Expectations measures what family caregivers anticipated nursing home care would be like before they institutionalized their relative. The scale includes questions such as "Did you believe or understand that the unit would be a soothing and calming place for your relative to be?" and "Did you believe or understand that this would be a place where your relative would be accepted regardless of his or her behavior?" On the Caregiver Burden, Involvement, and Expectations scales, up to 20% of missing items in each scale were prorated, using the mean score for that person.
Analysis
Zero-order associations were examined by means of Pearson correlation coefficients. We tested our conceptual model in order to examine the effect of individual characteristics (caregiver and resident characteristics, resource strains, and perceptions), unit characteristics (SCU and custodial unit status), and facility characteristics (location and profit status) on caregiver burden. We used a three-level model to incorporate the effects of individuals, nested within units, which are nested within facilities. This approach is warranted because the individual is the unit of analysis within a nested sample (Diez-Roux 1998, Diez-Roux 2000). Single-level, fixed-effects analyses on individual outcomes, such as ordinary least squares regression, ignore group membership and look only at individual, or "between," variation. This ignores the potential influence of group-level attributes on individual-level outcomes. If outcomes for individuals within groups are correlated, the assumption of independence of observations is violated, leading to underestimated standard errors. This results in an attribution of more variance to individual-level variables than is warranted. Multilevel analyses correctly estimate standard errors associated with regression coefficients because they take into account residual correlation of group-level variables that individuals within groups share, or "within variation," and estimate larger standard errors to account for fewer independent observations than the sample size would suggest (Bryk and Raudenbush 1992; Yow-Wu 1995). We used SAS PROC MIXED (SAS Institute, Cary, NC) in this research to perform a multilevel analysis because it allows for the incorporation of group-level variables into a micro-level equation when individuals are the unit of analysis and correctly estimates standard erro rs (Diez-Roux 2000; Littell, Milliken, Stroup and Wolfinger 1996; Singer 1998).
Four models were tested in the hierarchical analyses to determine which results indicated a better fit of the model to the data. In the first, facilities, and units within facilities, were treated as random effects, and the independent variables outlined above were treated as fixed effects. This analysis was performed to determine the variance in caregiver burden associated with facilities and units. The second model included the same fixed variables, but only facilities were treated as random effects. The third model included only the fixed variables, and random effects were not included. The fourth model examined only the significant fixed factors from the previous analyses, with facility and unit treated as random effects.
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Except for age, caregiver characteristics were not associated with burden. Our finding that older caregivers felt more burden supports those of other studies (Monahan 1995; Vitaliano, Russo, Young, Teri, and Maiuro 1991). Education, marital status, employment, and type of relationship were not related to burden. Previous research has indicated that caregiver burden is associated with having more education (Mangone et al. 1993; Monahan 1995), being married (Monahan 1995), and being employed (Barusch and Spaid 1989; Morris, Woods, Davies, and Morris 1991; Pearlin et al. 1990; Scharlach and Boyd 1989; Young and Kahana 1989). The literature is inconsistent regarding the question of who among immediate family members experiences the most burden in caregiving (Coen, Swanwick, O'Boyle, and Coakley 1997; Grafstrom, Fratiglioni, Sandman, and Winblad 1992; Grafstrom and Winblad 1995; Ritchie and Ledesert 1992; Young and Kahana 1989). We found no association between type of relationship to the nursing home resident and burden.
An examination of zero-order correlations may help explain some of these negative findings. Caregiver age was significantly related to work status (r = .59) and familial relationship (spouse, r = .42; daughter, r = -.24; son, r = -.15). As these caregiver characteristics were correlated, the strong association of caregiver age to burden may hide the effects of other caregiver characteristics, such as work status, which shows a trend toward statistical significance (p = .058 in the SAS PROC MIXED analysis). Nonetheless, most caregiver characteristics (education, marital status, family relationship, and work status) have low zero-order correlations with burden. Perhaps these caregiver characteristics have more salience as coping resources or potential stressors before placement than afterward.
Resident characteristics are not associated with burden in either zero-order or multivariate analyses. Research is contradictory regarding the effect of level of impairment on caregiver burden. There is growing evidence suggesting that level of impairment is not as important as other factors in caregiver outcomes (Hepburn, Tornatore, Center, and Ostwald 2001; Fisher and Lieberman 1999). Our research supports the findings of Coen and colleagues 1997, Fisher and Lieberman 1994, and Yates, Tennstedt, and Chang 1999. Length of stay is also not associated with caregiver burden as reported in another study (Drinka, Smith, and Drinka 1987), but contrary to Monahan 1995 findings. Although these caregiver and care receiver structural factors may be associated with caregiver burden in community settings, they appear to be less salient after nursing home placement.
The length of time spent in the direct caregiving role before institutionalization is the single most powerful predictor of caregiver burden. Caregivers who spent less time taking care of their relative prior to nursing home placement had greater burden. These findings run counter to what has been reported in other studies, which have posited that caregiving over extended periods negatively influences caregivers and that the stress continues after the relative is institutionalized (Pearlin et al. 1990; Spencer 1991). Although we observe that caregiver burden exists after institutionalization, our data suggest that longer caregiving experience prior to nursing home placement may have a buffering effect on burden experienced after placement.
Nursing home placement may reduce burden for family caregivers because the stress of being the primary caregiver is alleviated. The lifting of stress may be more pronounced for relatives who have been the primary caregiver for longer periods of time. For family members who are new to the caregiving role, the burden of caregiving after institutionalization could be greater because they are taking on a new role and may be taking on responsibilities they did not previously have. Keefe and Fancey 2000 suggested in their study of family caregivers of institutionalized relatives that for caregivers whose extent of caregiving in the community is low or nonexistent, any involvement (even in decision-making responsibilities) is perceived as a new stressor in their lives. Rather than seeing institutionalization as an alleviation of role strain, these novices in the caregiving role may perceive nursing home placement as a new source of stress.
Caregivers who have more experience in direct caregiving may be more likely than those without this experience to have developed effective coping strategies for the caregiving role. Those who have coped successfully with stress in the past might be better equipped to find effective strategies to handle new situations (Boss 1992; Brubaker 1990). Similarly, more experienced caregivers may have had more time to accept the decline of their relative as a result of Alzheimer's disease. Because dementia is a progressive illness, caregivers who have more experience with the disease may be further along in grieving the loss of their relative. These caregivers may be more accepting of their relative's cognitive and physical decline.
Another interpretation involves feelings of guilt. The societal misperception still exists that when families place their loved ones in a nursing home, they "dump" them there and cease to be involved in their lives, even though research has shown that most caregivers continue to be involved (Dellasega 1991; Kaplan and Boss 1999; Keefe and Fancey 2000). It is common for caregivers who have recently placed a relative to feel guilty because they were unable to continue giving care (Nolan and Dellasega 1999). Perhaps family members who have provided direct care over a longer duration feel they have fulfilled familial obligations and feel less guilty about putting their relative in a nursing home, compared with those without this experience.
Although it was significant in the bivariate analysis, longer distance from home to nursing home was not associated with burden in the multivariate analysis. This finding contradicts that reported by Stephens, Ogrocki, and Kinney 1991. We originally hypothesized that higher visitation frequency would be associated with more burden, but neither our multivariate nor our bivariate findings support this position. Because distance from home to nursing home and visitation frequency are correlated with involvement in hands-on care (rs = -.29 and .58, respectively), their effects may be masked in the multivariate model by the effect of involvement in hands-on care, which is significantly associated with burden.
Organizational resources that reflect macro-level attributes at the facility level (e.g., for-profit ownership or rural location) are not associated with caregiver burden. In contrast, organizational resources that reflect micro-level attributes at the unit level (e.g., SCU designation or custodial unit) are associated with burden. If for-profit status lowers the quality of care as others have reported (Aaronson, Zinn, and Rosko 1994; Bravo, De Wals, Dubois, and Charpentier 1999; Lemke and Moos 1989), it did not have any measurable effect on caregiver burden in this study (see A, Note 1). In our bivariate analysis, SCU designation was significantly associated with less caregiver burden and custodial unit status was not, although it approached significance. This pattern was reversed in the SAS PROC MIXED analysis, which showed that caregivers with relatives in custodial units had higher burden scores than caregivers with relatives in other unit types. SCU designation was not associated with burden in the PROC MIXED analysis, which corroborates the findings of another study showing limited effects of SCU designation on outcomes (Phillips et al. 1997). Perhaps SCU did not affect caregiver burden in the multivariate analysis because it did not connote a homogenous unit type, as did the custodial unit, which is based on an empirical typology of environmental, program, and staff attributes (Grant 1998). Custodial units provide few dementia-oriented services, and a poor fit between the needs of dementia residents and the operational and environmental resources offered by custodial units may increase caregiver burden. Organizational policies related to admissions criteria may help explain why custodial unit was significant in the multivariate model, but not in the bivariate analysis. Facilities with more differentiated (i.e., more specialized and less generic) units tend to admit residents at early, moderate, and late stages of dementia into different units within the same facility (Grant 1998). The variance among the variables in our conceptual model may have been influenced by such facility-level and unit-level policies. The multilevel model examines the effects among variables at individual, unit, and facility levels. As a result, it provides a more efficient estimate of the effect of custodial unit on caregiver burden. It is also possible that the effect of custodial unit becomes stronger when other independent variables are introduced into the model. Overall, our findings support Ritchie and Ledesert 1992 assertion that it is important to study organizational characteristics of the nursing home because institutional policies and practices may be more relevant to caregiver adaptation than patient-related variables.
Our results are consistent with previous research showing that caregiver perceptions are integral to the process of adaptation (Boss 1988, Boss 1992; Deimling and Bass 1986). Caregiver perceptions of involvement with hands-on care are associated with burden, which supports the findings of Yates and colleagues 1999. Friedemann, Montgomery, Maiberger, and Smith 1997 found that some family members provide direct care to their relative to compensate for perceived inadequate care by nursing home staff. Involvement with the nursing home is not significantly related to burden, perhaps because involvement with the nursing home has a moderate zero-order correlation with hands-on care (r = .43). In addition, care given because nursing home care is seen as deficient is likely to be more stressful than care given because of a continued wish to be involved in family members' lives. Nursing home staff need to provide opportunities for family caregiver involvement in ways that facilitate caregiver adaptation to the placement of their relative and do not create ambiguity between what are traditionally considered nursing staff functions and family caregiver responsibilities.
Low caregiver expectations are associated with more burden. Low expectations can reflect a lack of confidence or trust in the adequacy of services provided by a nursing home. Caregivers with low expectations may adopt a "vigilance" role in the nursing home to ensure that their relative's care needs are being met. Not trusting nursing home staff to provide adequate care, or having to maintain vigilance over nursing home care, is likely to increase caregiver burden.
This study has a number of limitations. First, these data were collected at one point in time. A longitudinal research design is needed to explore causal relationships among variables, as well as to investigate caregiver coping and burden over time. Second, our sample of units is drawn exclusively from Minnesota nursing homes, and the unit types described here may not generalize to other states. Third, more research is needed to further validate the measures used to test our models. Fourth, a broader family systems perspective that includes more than just the primary caregiver is warranted as interactions among family members and their involvement with the resident and nursing home staff can affect adaptation (Fisher and Lieberman 1999). Further research using a more conceptually complex model such as Pearlin and colleagues' (Aneshensel, Pearlin, Mullan, Zarit and Whitlatch 1995; Pearlin et al. 1990) model of the stress process, which incorporates secondary stressors—aspects of life not specific to caregiving—would be valuable. Aspects of the caregiver's life such as intrapsychic strains and informal and institutional role strains could be incorporated into the model, thus giving a more in-depth view of the caregiving process. Data for this analysis were taken from a larger study to evaluate the efficacy of dementia SCUs for nursing home residents, so these secondary data did not allow for such complex analyses. Fifth, the small number of participants in this sample whose relatives were in a custodial unit, as opposed to another unit type, may mean the findings are not robust. Therefore, these findings need to be replicated with a larger sample of custodial units. Sixth, there are two sources of possible bias in the data. There is a potential for systematic bias in our results due to the number of cases dropped from this analysis because of missing data. Also, residents and family members were not randomly assigned to facilities or type of unit. As a result, we were unable to completely control for all possible selection bias, such as differences in cognitive levels in SCUs, non-SCUs, or custodial units, although we included resident FAST scores in the analyses, which controlled for bias to some extent.
We hope that exploratory study will direct researchers, policymakers, clinicians, and consumer groups toward further inquiry into how to more appropriately support family caregivers after placement of a cognitively impaired relative in a nursing home. Our results suggest that programs might benefit from approaches that identify progressive stages of family caregiving over time. Caregiver experiences, both before and after institutionalization, appear to affect adaptation. Although the decision to institutionalize a demented relative represents a major transition in the family caregiver's role, the caregiver's previous experiences are linked to how a caregiver adapts to this role after nursing home placement. Our findings suggest that more services aimed at relieving caregiver burden after nursing home placement may be warranted, particularly so for caregivers who are older and for those who had a shorter length of involvement in direct caregiving before placement. Specifically, greater attention needs to be focused on family caregivers who are new to the caregiving role at the point of nursing home placement, as they appear to be at a heightened risk for burden.
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Acknowledgments |
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Received for publication February 21, 2000. Accepted for publication February 4, 2002.
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found residents with severe cognitive deficits received lower quality of care in for-profit facilities in bivariate analyses, but that effect did not remain significant when tested with other variables in the model. |
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