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Family Caregiver Satisfaction With the Nursing Home After Placement of a Relative With Dementia

¹ Screen Inc., Seattle, Washington.
² Department of Healthcare Management, University of Minnesota, Minneapolis.

Address correspondence to Jane B. Tornatore, 2633 14th Ave. W., No. 21, Seattle, WA 98119. E-mail: JBTornatore{at}comcast.net

	Abstract

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Objective. This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies.

Methods. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis.

Results. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation.

Discussion. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

QUALITY improvement strategies are becoming more widespread in nursing facilities. Provider organizations are measuring and monitoring nursing home performance on an ongoing basis to improve their services. The Centers for Medicare and Medicaid Services and other organizations now publish "benchmarks" on nursing home performance via the Internet to help consumers become better informed when making decisions about selecting a facility. Organizations are using "performance measurement templates" or "balanced score cards" to track key performance indicators such as quality of care, quality of life, financial ratios, staff turnover, and satisfaction among residents, staff, and family caregivers (Grant, Potthoff, & Olson, 2001).

There are 16,840 nursing homes in the United States with 1.56 million residents (Rhoades, Potter, & Krauss, 1998). The majority of these residents (70.8%) have some form of memory impairment, and almost one third (30.2%) exhibit some form of behavior problem (Krauss & Altman, 1999). For those residents in moderate to advanced stages of Alzheimer disease, it is difficult (if not impossible) to assess resident satisfaction with nursing home care. With few exceptions such as the Ohio Nursing Home Resident Satisfaction Survey (Straker & Ejaz, 2001) and the Ohio Nursing Home Family Satisfaction Survey (Straker, Ehrichs, Ejaz, & Fox, 2002), large-scale consumer satisfaction surveys have not been used to assess resident and family satisfaction with nursing home care. This state of affairs is changing rapidly as more and more organizations begin to collect data on consumer satisfaction using standardized protocols. Although a large number of studies have assessed patient satisfaction with health care in acute care settings, much of this research does not provide a good guide for customer satisfaction measures in long-term care settings (Applebaum, Straker, & Geron, 2000). Most studies of satisfaction in nursing homes are descriptive, and there is limited research focused on predictors of satisfaction.

Research about family caregiving for persons with Alzheimer disease has focused primarily on the community setting. Less attention has been paid to caregiving after nursing home placement, even though family involvement in caregiving does not end after institutional placement. Most families continue their commitment to their relative in the nursing home (Hertzberg, Ekman, & Axelsson, 2001; Keefe & Fancey, 2000; Zarit & Whitlatch, 1992). Studies about caregiver satisfaction after institutional placement generally report high levels of satisfaction with nursing home care (Gaugler, Leitsch, Zarit, & Pearlin, 2000; Murphy et al., 2000; Ritchie & Ledesert, 1992; Toye, Percival, & Blackmore, 1996). However, caregiver dissatisfaction has been reported (Biegal, Song, & Milligan, 1995), and dissatisfaction is related to problems in family and staff interactions (Gaugler et al., 2000; Vinton & Mazza, 1994). Determining what factors contribute to positive family satisfaction is a critical step toward implementing more effective performance improvement programs.

	THEORETICAL MODEL

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In this article, we adapt a stress process model first developed by Pearlin and colleagues (Pearlin, Mullan, Semple, & Skaff, 1990) and further developed by Aneshensel and colleagues (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995) and Pearlin and associates (Pearlin, Aneshensel, & Leblanc, 1997) to study family caregiver satisfaction after placement of a relative with Alzheimer disease in a nursing home. Caregiver satisfaction is studied in relation to primary objective and subjective stressors, caregiver characteristics, and organizational resources (Figure 1).

View larger version (36K): [in this window] [in a new window]   Figure 1. Concepts and measures for the stress process model

One primary subjective stressor is in our model: the caregiver's expectations for nursing home care. Primary subjective stressors arise from the appraisal of objective stressors or emotional distress. Subjective stressors are related to intrapsychic processes that reflect how the nursing home is perceived as meeting the resident's changing needs. For example, are the caregiver's expectations for care being met by the facility?

Background Characteristics of the Caregiver and Organizational Resources
Background characteristics of the caregiver (education, marital status, familial relationship, workforce participation, distance from the caregiver's home to the nursing home, and age) and the organizational resources provided by the nursing home are situational factors that affect the stress process. We focus on the following organizational resources: rural versus urban location, for-profit versus nonprofit ownership, dementia special care unit (SCU) designation, and custodial unit designation.

	METHODS

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Data for this study were collected as part of a larger study to evaluate the impact of dementia SCUs in Minnesota nursing homes (Grant, Kane, & Stark, 1995). Resident and family caregiver data were collected from 100 nursing units in 38 nursing facilities in Minnesota. Nursing units were stratified to represent a range of approaches to the organization of dementia care. The sample of units was stratified to represent a typology of dementia care developed by Grant (1998). Units ranged from those with extensive features (e.g., environmental design, programmatic, and staffing) geared to the needs of persons with dementia to those without dementia-oriented features. A random sample of residents with dementia was drawn from each type of nursing unit. The most involved family member of each resident (corroborated by nursing home staff) was contacted and interviewed by phone. These interviews lasted an average of half an hour.

We contacted the most involved family member of 464 dementia residents. Thirty-one family members could not be reached after multiple call attempts, and 4 caregivers refused the interview, leaving a total of 429 respondents (92% response rate). Demographic data for those 35 family members not interviewed are not available. Consequently, it is not possible to determine if they differed on demographic characteristics from those in our sample. Seventy-two residents had no family members (i.e., they had a legal guardian who was unrelated to them). As legal guardians had limited involvement in the nursing home and limited knowledge of the resident, they were excluded from this analysis. This left 357 caregivers. From this group, 72 caregivers had incomplete data and were dropped from the analysis. The final sample consisted of 285 family caregivers. The 72 caregivers with incomplete data were more likely to be daughters (p =.013) and older (p =.021), with a mean age of 63.6 years compared with a mean age of 59.8 years for the 285 caregivers in the analysis. No other statistically significant differences were found on caregiver characteristics between the 285 caregivers with complete data and the 72 caregivers with incomplete data.

Measures
Caregiver satisfaction
Our family caregiver satisfaction measure is derived from the work of Montgomery (1994) as part of the "Collaborative Studies on SCUs for Alzheimer disease" (National Institute on Aging Coordinating Center, 1991). Montgomery's scale is unique in that it focuses on caregivers of dementia residents after institutional placement. Family caregiver satisfaction measures family caregivers' contentment with the care their relative receives in the nursing home. This measure is composed of 10 items on a 4-point Lickert-type scale (Cronbach =.80; see Table 1 for items). Up to 20% of the missing items on the caregiver satisfaction scale were prorated using the average score for other items comprising the scale.

Our measures for caregiver involvement and expectations are based on the work of Montgomery (National Institute on Aging Coordinating Center, 1991). Involvement consists of two subscales: (a) general involvement in the nursing home (Cronbach =.76) and (b) involvement in direct hands-on care (Cronbach =.76). The first scale assesses how involved family caregivers are in the nursing home. Items include the following: "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?" The second scale assesses how involved family caregivers are in the direct care of their relative. Involvement in hands-on care includes items such as "How often in the past month have you engaged in directly providing care for your relative by assisting with feeding, clothing, toileting, and bathing?" and "How often have you discussed the care of your relative with a staff member of the home?" Both involvement scales are composed of four items with 5-point Lickert-type responses of 1 = never, 2 = rarely, 3 = sometimes, 4 = often, and 5 = frequently. Our measure of subjective stress, family caregiver expectations, is a 14-item scale using 5-point Lickert-type responses ranging from 1 = not at all to 5 = a great deal (Cronbach =.74). Expectations measures what family caregivers anticipated nursing home care would be like before they institutionalized their relative. The scale includes items 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?" Up to 20% of the missing items on the two caregiver involvement scales and the caregiver expectations scale were prorated using the average score for other items comprising the scale.

Caregiver characteristics
Six demographic variables are included: education (6-point scale ranging from 1 = <8 years to 6 = postcollege), marital status (1 = married, 0 = not married), type of relationship (dummy variables: spouse, son, or daughter, versus other relative), workforce participation (1 = working full-time, 2 = working part-time, 3 = unemployed/retired/homemaker), distance from the caregiver's residence to the nursing home (a 5-point scale ranging from 1 = same city to 5 = 60 miles), and age (continuous).

Organizational resources
Four nursing home resources are examined: geographic location (1 = rural, 0 = urban), type of ownership (1 = nonprofit, 0 = for-profit), SCU designation (1 = SCU, 0 = non-SCU), and custodial unit designation (1 = custodial unit, 0 = non-custodial unit). Custodial units represent those units that are the least tailored toward meeting the needs of residents with Alzheimer disease and related dementia (Grant, 1998). These units commingle residents with and without cognitive impairments. They do not have physical environments or social programs that are tailored to the limited cognitive and functional abilities of residents with Alzheimer disease. Custodial units are geared to the needs of high-functioning, cognitively intact residents. These units are characterized by high levels of noxious environmental stimulation that can exacerbate the behavioral symptoms among residents with Alzheimer disease. None of the custodial units have an SCU designation. The custodial unit variable measures a different aspect of dementia care than does SCU designation. The SCU designation does not connote a single unit type because it is based on self-report, whereas the custodial unit designation is based on an empirically derived typology (Grant, 1998). The correlation between SCU designation and custodial unit designation is low (r = -.16).

Analysis
First, zero-order associations are examined using Pearson correlation coefficients. Second, we conduct a hierarchical multilevel analysis (SAS PROC MIXED) to examine the effects of primary objective and subjective stressors, caregiver characteristics, and organizational resources on family caregiver satisfaction. We test a three-level model to incorporate the effects of individuals, nested within units, which are nested within facilities. Single-level, fixed-effects analyses on individual outcomes, such as ordinary least-squares regression, ignore group membership and only look 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 & Raudenbush, 1992; Yow-Wu, 1995). SAS PROC MIXED is used because it allows for the incorporation of group-level variables into a microlevel equation when individuals are the unit of analysis, and it correctly estimates standard errors (Diez-Roux, 2000; Littell, Milliken, Stroup, & Wolfinger, 1996; Singer, 1998). One model is tested with three levels: facilities, units within facilities, and individuals within units. Facilities and units are treated as random effects and individual-level variables as fixed effects.

	RESULTS

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Table 2 summarizes caregiver characteristics for our sample of 285 caregivers. They were primarily Caucasian, and the majority were women (65%). Most were either daughters (45%) or sons (29%). Only 9% of caregivers were spouses, and the mean age was 60 years. Most either worked full-time (44%) or were unemployed (38%). Twenty-nine percent had a high school diploma, and 63% received at least some postsecondary education. Over three quarters were married (80%). Thirty-four percent were not involved in caregiving before nursing home placement, and 42% were involved for >1 year before placement. Three quarters (75%) visited their relative in the nursing home at least once a week. Most (79%) lived within 15 miles of the facility where their relative was placed. Satisfaction scores were moderately high with a mean score of 29.76 (SD = 3.80, range = 10–40).

Table 3 shows zero-order correlation coefficients between family caregiver satisfaction and the independent variables. None of the caregiver characteristics was significantly correlated with satisfaction. More advanced stage of dementia was associated with lower satisfaction (p =.043). Those who spent more time in the caregiving role prior to institutional placement had higher satisfaction (p =.004). Caregivers with more involvement in hands-on care also had lower satisfaction (p =.004). Caregivers with higher expectations had higher satisfaction (p =.000). Rural location of facility (p =.000) and nonprofit ownership (p =.006) were correlated with higher satisfaction. Resident placement in a custodial unit was associated with lower satisfaction (p =.039).

Table 4 shows the results of the multilevel analysis. Neither facility nor unit was significantly correlated with caregiver satisfaction. Although facilities seem to have a small correlation (estimate =.97) with caregiver satisfaction, no variation is accounted for by units (estimate = 0). In other words, there is no significant correlation of satisfaction scores among caregivers with relatives in the same unit or facility. The SAS PROC MIXED analysis indicates that seven variables were significantly associated with higher satisfaction: less advanced stage of dementia (p =.042); longer time caregiving prior to institutionalization (p =.003); higher visitation frequency (p =.001); less involvement with direct hands-on care (p =.000); higher expectations for care (p =.000); not working full-time (p =.046); and rural location (p =.046).

	DISCUSSION

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Almost half the caregivers in our sample worked full-time, and over 70% visited their relative at least weekly. The demands of the workplace coupled with demands of the caregiving role may create role conflict that undermines satisfaction. Studies have shown that workforce participation is positively correlated with caregiver burden (Morris, Woods, Davies, & Morris, 1991; Pearlin et al., 1990). More recently, studies have found that greater time involvement in work has a buffering effect on caregiver stress (Martire, Stephens, & Atienza, 1997). In our study, workforce participation was associated with lower caregiver satisfaction.

More advanced stage of dementia may undermine family satisfaction because so few nursing homes have much to offer in the form of specialized activities and programs for residents in advanced (as opposed to early or moderate) stages of Alzheimer disease. For example, dementia units frequently discharge residents who are bed bound, unable to walk, or unable to participate in specialized programming (Grant, 1998). Ritchie and Ledesert (1992) found that many caregivers were dissatisfied with lack of activities for residents, though they found no relationship with stage of dementia.

The longer family members were caregivers before institutionalization, the more satisfied they are after placement. Prior research presents contradictory findings on the effect of protracted caregiving on caregiver outcomes (Aneshensel et al., 1995; Tornatore & Grant, 2002; Townsend et al., 1989). Our results contradict previous findings that caregiving over extended periods of time negatively impacts caregiver outcomes and that these effects continue after nursing home placement (Pearlin et al., 1990; Spencer, 1991). Aneshensel and colleagues (1995) found that individuals whose caregiving activities quickly change from limited to extensive are more likely to feel overwhelmed by care demands than those who previously had heavy care responsibilities. Thus, family members who become caregivers shortly before placement, or at placement, may experience a higher degree of stress and therefore be less satisfied. Another interpretation is that caregivers with more experience better understand what it means to care for a person with Alzheimer disease. They have more realistic expectations about what nursing homes can do for their relative after placement.

Schwartz and Vogel (1990) reported that higher visitation frequency is associated with lower caregiver satisfaction. We found the opposite to be true. The more often caregivers visit their relative, the more satisfied they are. Family members who visit more often may be more selective in choosing a nursing home in the first place. Family members who frequently visit also get to know the nursing staff better, so they can communicate their preferences for care. Families of residents with dementia can provide nursing staff with valuable information about their relative. Workshops in which the family members educate the staff about their relative benefit the residents and give families a sense that their relatives are seen as people rather than as a disease (Hepburn et al., 1997). In turn, this information improves interaction between staff and residents (Anderson, Hobson, Steiner, & Rodel, 1992) and improves resident care (Karner, Montgomery, Dobbs, & Wittmaier, 1998; Maas, Buckwalter, & Kelley, 1991).

Caregivers who felt they were more involved in direct hands-on care of their relative were less satisfied. This finding parallels that of previous studies (Murphy et al., 2000; Toye et al., 1996). Some caregivers end up in a "family vigilance" role by providing hands-on care because of their concerns about the poor quality of care (Buckwalter & Hall, 1987; Friedemann, Montgomery, Maiberger, & Smith, 1997; Maas et al., 1991).

If caregivers expect the care will be adequate when they place a family member in a nursing home, they are more likely to be satisfied after placement. Caregiver expectations measure the caregiver's trust in the provider organization. If a family's experience is consistent with their expectations, they are more likely to be satisfied (Montgomery, 1994). Family members who have high expectations may be more likely to chose nursing homes that meet those expectations. Vinton and Mazza (1994) found that conflict, including aggressive behavior toward staff, can occur when care does not meet caregiver expectations. One strategy for improving customer satisfaction is to more aggressively manage the expectations that caregivers develop by providing better marketing materials or disclosure information about what specialized services a facility offers a person with Alzheimer disease.

Family involvement programs have captured the interest of researchers, and some have called for more family involvement in hands-on care to improve care given to residents (Duncan & Morgan, 1994; Maas et al., 1991). Family involvement has been shown to improve patient care as well as staff outcomes and staff and family interactions (Anderson et al., 1992; Hanson, Patterson, & Wilson, 1988; Linsk, Miller, Pflaum, & Ortigara-Vicik, 1988). Our findings indicate that programs to increase family involvement should be implemented with caution. Programs need to be sensitive to how caregivers want to be involved (Murphy et al., 2000; Toye et al., 1996). Families should be consulted to determine what kind of involvement would be the most meaningful for them. Although some caregivers have expressed a desire to give more hands-on care (Maas et al., 1991; Ritchie & Ledesert, 1992; Schwartz & Vogel, 1990), other researchers (Friedemann et al., 1997) found that caregivers reported they would prefer to be less involved in direct care. Whereas some family caregivers perceive involvement in care planning as desirable (Duncan & Morgan, 1994), this is not a global sentiment. Many caregivers prefer to relinquish most technical hands-on tasks to the staff and instead focus on preservative care, defined as emotional and psychosocial care that maintains the family member's identity, personal dignity, and worth (Bowers, 1988; Duncan & Morgan, 1994). Our analysis indicates that high levels of involvement in direct hands-on care may not have the desired effect on family caregiver satisfaction.

Only one of the organizational resources (rural/urban location) that was associated with caregiver satisfaction in the bivariate analysis was associated with satisfaction in the multilevel analysis. Our model suggests that organizational resources are less important to family caregiver satisfaction when other factors are controlled in a multilevel analysis. It is plausible that unit designation (SCU or custodial unit) or facility characteristics (profit status) affect other independent variables such as visitation frequency, involvement with hands-on care, or expectations. In turn, these variables are more directly related to family caregiver satisfaction. A selection bias is also possible whereby family members who visit more frequently, who are less involved in hands-on care, or who have higher expectations for care pick facilities that meet their requirements and preferences.

Caregivers with relatives in rural facilities were more satisfied with care than those in urban facilities. Rural communities tend to be smaller and more tightly knit than urban areas, so it is reasonable to assume caregivers, residents, and staff are likely to know each other prior to institutional placement. Indeed, rural nursing homes possibly have staff and residents who are related. These social ties are likely to affect social relationships after placement. Such close social relationships make family, resident, and staff interactions less impersonal (Duncan & Morgan, 1994; Rowles, Concotelli, & High, 1996). If caregivers know the nursing home staff, it is plausible that they would teach the staff how to care for their relative. Additionally, urban facilities in Minnesota have the highest turnover rates in the state (Priester & Totten, 2001). When staff members leave, family members need to reeducate new staff about their relative.

Custodial unit designation was associated with lower caregiver satisfaction in the correlational analysis. Units less geared to meet the special needs of residents with dementia would likely be less beneficial and therefore less satisfactory to family caregivers. Some researchers perceive SCUs as being distinguished by their approach toward the family members of residents (Kane, 1994) through family involvement (Berg et al., 1991; Chafetz, 1991; Montgomery, 1994) or providing services to families (Berg et al., 1991). Neither SCU designation nor custodial unit designation was related to family caregiver satisfaction in the multilevel analysis. Our findings contradict earlier research (Wakefield, Buckwalter, & Collins, 1997) that found family members are more satisfied with SCUs than non-SCUs.

As many caregivers feel conflict and guilt after nursing home placement (Nolan & Dellasega, 1999), interventions such as counseling, family support groups, and educational programs have the potential to help caregivers adjust to their new situation. Our findings suggest that targeted interventions can be developed to help caregivers who are at heightened risk of feeling dissatisfied, for example, persons who are working, individuals who have less experience as the primary caregiver before nursing home placement occurs, and those who have a relative in more advanced stages of Alzheimer disease.

This study has a number of limitations. These cross-sectional data were collected at one point in time. As a result, causal relationships among the variables cannot be tested or assumed. Our sample was drawn from Minnesota nursing homes, so our findings may not generalize beyond Minnesota. The potential selection bias of missing data may have empirical ramifications on our analyses. Several of our measures are new, so further research needs to be conducted to validate our findings. In particular, the family involvement scale may not adequately measure the complex nature of the involvement of families in nursing homes.

Replication of our findings in a larger sample using a longitudinal research design, including preplacement, is warranted. Future research utilizing a family systems perspective should include information about other family members (not just the most involved family caregiver) because interactions among family members and family dynamics are likely to influence caregiver satisfaction.

Our study raises an interesting question: What positive or negative meanings are attributed to family caregiver involvement in the nursing home? Family caregivers want nursing home staff to accept family involvement and take family knowledge into account when making care decisions (Duncan & Morgan, 1994). They see quality of care as dependent on family participation and input (Bowers, 1988; Hanson et al., 1988; Linsk et al., 1988) and are dissatisfied when they are not invited to participate in the care of their relative (Maas et al., 1991). Family members want to be welcomed and appreciated for their knowledge.

If caregivers are invited to participate through what they perceive to be positive avenues, they may view the nursing home as being more responsive to their relative's needs. Under favorable circumstances, more family caregivers may view direct hands-on care in a positive light, rather than as being necessary to compensate for inadequate nursing care. If the goal of quality improvement efforts is to increase positive family involvement, nursing homes need to develop programs that clarify roles, responsibilities, and expectations of staff and family members (Bonder, Miller, & Linsk, 1991; Maas et al., 1991). If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

	Acknowledgments

 
This research was supported in part through grants from the National Institute on Aging for NIA Collaborative Studies on Special Care Units for Alzheimer disease (RFA AG-91-06) and the Alzheimer's Association (TRGC-96-018).

	Footnotes

 
Decision Editor: Charles F. Longino, Jr., PhD

Received for publication November 15, 2002. Accepted for publication September 15, 2003.

	References

TOP Abstract Theoretical Model Methods Results Discussion References

 

• Anderson, K. H., Hobson, A., Steiner, P., Rodel, B. 1992. Patients with dementia: Involving families to maximize nursing care. Journal of Gerontological Nursing, 18,19-25.
• Aneshensel, C. S, Pearlin, L. I., Mullan, J. T., Zarit, S. H., Whitlatch, C. J. 1995. Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.
• Applebaum, R. A., Straker, J. K., Geron, S. M. 2000. Assessing satisfaction in health and long-term care: Practical approaches to hearing the voices of consumers. New York: Springer.
• Auer, S. R., Sclan, S. G., Yaffee, R. A., Reisberg, B. 1994. The neglected half of Alzheimer disease: Cognitive and functional concomitants of severe dementia. Journal of the American Geriatrics Society, 42,1266-1272.[Medline]
• Berg, L., Buckwalter, K. C., Chafetz, P. K., Gwyther, L. P., Holmes, D., Liepke, K. M., et al. 1991. Special care units for persons with dementia. Journal of the American Geriatrics Society, 39,1229-1236.[Medline]
• Biegel, D. E., Song, L., Milligan, S. E. 1995. A comparative analysis of family caregivers' perceived relationships with mental health professionals. Psychiatric Services, 46,477-482.[Abstract/Free Full Text]
• Bonder, B. R., Miller, B., Linsk, N. 1991. Who should do what? Staff and family responsibilities for persons with Alzheimer disease in nursing homes. Clinical Gerontologist, 10,80-84.
• Bowers, B. J. 1988. Family perceptions of care in a nursing home. The Gerontologist, 28,361-368.[Medline]
• Bryk, A. S., Raudenbush, S. W. 1992. Hierarchical linear models. Newbury Park, CA: Sage.
• Buckwalter, K. C., Hall, G. R. 1987. Families of the institutionalized older adult: A neglected resource. In K. Buckwalter (Ed.), Aging, health & family (pp. 176–196). New York: Sage.
• Chafetz, P. K. 1991. Behavioral and cognitive outcomes of SCU care. Clinical Gerontologist, 11,19-38.
• Diez-Roux, A. 2000. Multilevel analysis in public health research. Annual Review of Public Health, 21,171-192.[Medline]
• Duncan, M. T., Morgan, D. L. 1994. Sharing the caring: Family caregivers' views of their relationships with nursing home staff. The Gerontologist, 34,235-244.[Abstract]
• Friedemann, M., Montgomery, R. J., Maiberger, B., Smith, A. A. 1997. Family involvement in the nursing home: Family-oriented practices and staff-family relationships. Research in Nursing and Health, 20,527-537.
• Gaugler, J. E., Leitsch, S. A., Zarit, S. H., Pearlin, L. I. 2000. Caregiver involvement following institutionalization: Effects of preplacement stress. Research on Aging, 22,337-359.[Abstract/Free Full Text]
• Grant, L. A. 1998. Beyond the dichotomy: An empirical typology of Alzheimer's care in nursing homes. Research on Aging, 20,569-592.[Abstract]
• Grant, L. A., Kane, R. A., Stark, A. J. 1995. Beyond labels: Nursing home care for Alzheimer disease in and out of special care units. Journal of the American Geriatrics Society, 43,569-576.[Medline]
• Grant, L. A., Potthoff, S. J., Olson, D. M. 2001. Staffing and administrative issues in special care units. Alzheimer's Care Quarterly, 2,22-27.
• Hanson, S. S., Patterson, M. A., Wilson, R. W. 1988. Family involvement on a dementia unit: The resident enrichment and activity program. The Gerontologist, 28,508-510.[Medline]
• Hepburn, K. W., Caron, W., Luptak, M., Ostwald, S., Grant, L., Keenan, J. M. 1997. The family stories workshop: Stories for those who cannot remember. The Gerontologist, 37,827-832.[Abstract]
• Hertzberg, A., Ekman, S., Axelsson, K. 2001. Staff activities and behaviour are the source of many feelings: Relatives' interactions and relationships with staff in nursing homes. Journal of Clinical Nursing, 10,380-388.[Medline]
• Kane, R. A. 1994. Harbingers of the future? Seeking the "special" in the dementia special care unit. Alzheimer Disease and Associated Disorders, 8(Suppl. 1), S425-428.
• Karner, T. X., Montgomery, R., Dobbs, D., Wittmaier, C. 1998. Increasing staff satisfaction: The impact of SCUs and family involvement. Journal of Gerontological Nursing, 24,39-44.
• Keefe, J., Fancey, P. 2000. The care continues: Responsibility for elderly relatives before and after admission to a long term care facility. Family Relations, 49,235-244.
• Krauss, N. A., Altman, B. M. 1999. Characteristics of nursing home residents—1996 (AHCPR Pub. No. 99-0006). Rockville, MD: Agency for Health Care Policy and Research.
• Linsk, N. L., Miller, B., Pflaum, R., Ortigara-Vicik, A. 1988. Families, Alzheimer disease, and nursing homes. Journal of Applied Gerontology, 7,331-349.
• Littell, R. C., Milliken, G. A., Stroup, W. W., Wolfinger, R. D. 1996. SAS system for mixed models. Cary, NC: SAS Institute.
• Maas, M. L., Buckwalter, K. C., Kelley L. S. 1991. Family members' perceptions of care of institutionalized patients with Alzheimer disease. Applied Nursing Research, 4,135-140.[Medline]
• Martire, L. M., Stephens, M. A. P., Atienza, A. A. 1997. The interplay of work and caregiving: Relationships between role satisfaction, role involvement, and caregivers' well-being. Journal of Gerontology: Social Science, 52B,S279-S289.
• Montgomery, R. J. V. 1994. Family measures in the special care unit context. Alzheimer Disease and Associated Disorders, 8(Suppl. 1), S242-246.
• Morris, R. G., Woods, R. T., Davies, K. S., Morris, L. W. 1991. Gender differences in careers of dementia sufferers. British Journal of Psychiatry, 158(Suppl. 10), S69-74.
• Murphy, K. M., Morris, S., Kiely, D. K., Morris, J. N., Belleville-Taylor, P., Gwyther, L. 2000. Family involvement in special care units. Research & Practice in Alzheimer Disease, 4,229-239.
• National Institute on Aging Coordinating Center. 1991. The National Institute on Aging Collaborative Studies on Special Care Units for Alzheimer's Disease Common Core Measures: Background and description of psychometric properties for each measure. (Available from Hebrew Home for the Aged at Riverdale, Research Division, 3260 Henry Hudson Pkwy., Bronx, NY 10463).
• Nolan, M., Dellasega, C. 1999. "It's not the same as him being at home": Creating caring partnerships following nursing home placement. Journal of Clinical Nursing, 8,723-773.[Medline]
• Pearlin, L. I., Aneshensel, C. S., Leblanc, A. J. 1997. The forms and mechanisms of stress proliferation: The case of AIDS caregivers. Journal of Health and Social Behavior, 38,223-236.[Medline]
• Pearlin, L. I., Mullan, J. T., Semple, S. J., Skaff, M. M. 1990. Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30,583-594.[Abstract]
• Priester, J., Totten, A. 2001. Peopling long-term care: Assuring an adequate long-term care workforce for Minnesota. (Available from Minnesota Chair in Long-Term Care and Aging & Center on Aging, University of Minnesota, 420 Delaware Street SE, Mayo Mail Code 197, Minneapolis, MN 55455-0421).
• Reisberg, B. 1988. Functional assessment staging (FAST). Psychopharmacological Bulletin, 24,653-659.[Medline]
• Reisberg, B., Sclan, S. G., Franssen, E., Kluger, A., Ferris, S. 1994. Dementia staging in chronic care populations. Alzheimer Disease and Associated Disorders, 8(Suppl. 1), SS188-S205.
• Rhoades, J., Potter, D. E., Krauss, N. 1998. Nursing homes—Structure and selected characteristics—1996 (AHCPR Pub. No. 98-0006). Rockville, MD: Agency for Health Care Policy and Research.
• Ritchie, K., Ledesert, B. 1992. The families of the institutionalized dementing elderly: A preliminary study of stress in a French caregiver population. International Journal of Geriatric Psychiatry, 7,5-14.
• Rowles, G. D., Concotelli, J. A., High, D. M. 1996. Community integration of a rural nursing home. Journal of Applied Gerontology, 15,188-201.[Abstract/Free Full Text]
• Schwartz, A. N., Vogel, M. E. 1990. Nursing home staff and residents' families' role expectations. The Gerontologist, 30,49-53.[Abstract]
• Singer, J. D. 1998. Using SAS PROC MIXED to fit multilevel models, hierarchical models, and individual growth models. Journal of Educational and Behavioral Statistics, 24,323-355.
• Spencer, B. 1991. Partners in care: The role of families in dementia care units. In D. H. Coons (Ed.), Specialized dementia care units (pp. 189–204). Baltimore: Johns Hopkins University Press.
• Straker, J. K., Ehrichs, L., Ejaz, F. K., Fox, K. 2002. Implementation of the 2001 Ohio Nursing Home Family Satisfaction Survey (Submitted by the Scripps Gerontology Center, Miami University, Oxford, OH, & Margaret Blenkner Research Center of the Benjamin Rose Institute, Cleveland, OH). (Available from the Ohio Department of Aging, 50 West Broad Street, 9th Floor, Columbus, OH 43215-3363).
• Straker, J. K., Ejaz, F. 2001. Final report on survey development and testing for the Ohio Nursing Home Resident Satisfaction Survey (Submitted by the Scripps Gerontology Center, Miami University, Oxford, OH, & Margaret Blenkner Research Center of the Benjamin Rose Institute, Cleveland, OH). (Available from the Ohio Department of Aging, 50 West Broad Street, 9th Floor, Columbus, OH 43215-3363).
• Tornatore, J. B., Grant, L. 2002. Burden among family caregivers of persons with Alzheimer disease in nursing homes. The Gerontologist, 42,497-506.[Abstract/Free Full Text]
• Townsend, A., Noelker, L., Deimling, G., Bass, D. 1989. Longitudinal impact of interhousehold caregiving on adult children's mental health. Psychology and Aging, 4,393-401.[Medline]
• Toye, C., Percival, P., Blackmore, A. 1996. Satisfaction with nursing home care of a relative: Does inviting greater input make a difference? Collegian, 3,4-11.
• Vinton, L., Mazza, N. 1994. Aggressive behavior directed at nursing home personnel by residents' family members. The Gerontologist, 34,528-533.[Abstract]
• Wakefield, B., Buckwalter, K. C., Collins, C. E. 1997. Assessing family satisfaction with care for persons with dementia. Balance, 1(1), S16-17,40-42.
• Yow-Wu, B. 1995. Hierarchical linear models: A multilevel data analysis technique. Nursing Research, 44,123-126.[Medline]
• Zarit, S. H., Whitlatch, C. J. 1992. Institutional placement: Phases of the transition. The Gerontologist, 32,665-672.

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