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Correspondence: Address correspondence to Joseph E. Gaugler, PhD, Center on Aging, Center for Gerontological Nursing, School of Nursing, University of Minnesota, 6-150 Weaver-Densford Hall, 1331, 308 Harvard Street SE, Minneapolis, MN 55455. E-mail: gaug0015{at}umn.edu
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Abstract |
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 TOP Abstract Conceptualization of Informal...Survey of the Literature:...Research RecommendationsReferences |
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Key Words: Family caregiving • Residential care • Long-term care • Informal care
This article examines how informal help is integrated into an emerging model of residential long-term care: assisted living (AL). We begin with a conceptual exploration of how informal care varies in AL settings when compared to more scrutinized residential contexts where formal and informal care may interact—the licensed and/or certified NH. The second section of this article surveys the literature in order to ascertain whether current research findings support our conceptual model of informal care in AL. We conclude with a series of recommendations designed to guide future research on the interface of informal and formal long-term care in AL.
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Conceptualization of Informal Care in AL |
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Family involvement in residential settings can both supplement and supplant the formal care offered. Personal care includes activity of daily living (ADL) assistance, such as grooming, caring for a relative's skin, assisting the relative to walk, helping with eating/feeding, and providing aid in going to the bathroom or dressing (Maas et al., 2004). Family members may provide these services when they perceive that a facility is not doing so.
Families can also provide assistance with instrumental ADLs (IADLs), or instrumental care. Instrumental care provided by facility staff may supplant care that was once provided by families, such as assistance with laundry; cleaning or organizing the relative's room/apartment; preparing and storing food and beverages; and offering transportation (Maas et al., 2004). Other instrumental tasks are supplemental (both informal and formal care providers offer assistance), such as arrangement of, participation in, and follow-up of doctor's appointments and related services; assistance with financial affairs and bills; and health care decision making. Although residential facilities may vary in their provision of instrumental care, family members appear to continue to provide at least some supplementary services (Gaugler, Anderson, & Leach, 2003).
Other dimensions of informal care are of potential interest following entry into a residential setting. For example, one type of care that has received little attention in residential-based studies of family involvement is socioemotional support. Socioemotional support encompasses a number of activities, including talking with the resident, holding hands with the resident, reminiscing, and engaging in social activities (Maas et al., 2004). The need for socioemotional support is likely high given the challenges of moving from a familiar place into an entirely new setting, coping with change, reestablishing routines and relationships, and (as much as permitted by the setting) reorganizing personal belongings.
Additional dimensions of family involvement may highlight the ambiguous delineation of care roles between informal and formal care providers following residential care placement. For example, with the introduction of formal facility staff in the care system, many family members may feel the need to monitor care provision or advocate for their relatives. As Bowers (1988) noted with reference to NHs, family monitoring of facility care can encompass supervising or keeping a watch over nurse aides or other day-to-day care staff. Other aspects of monitoring may include coordinating with care staff in order to maximize the quality of care provided, such as sharing personal information about the relative to staff (Maas et al., 2004). Similarly, whereas personal and some forms of instrumental care may be relinquished to formal care providers, families may feel it necessary to either direct formal care provision or give a voice to the concerns of the relative or other residents. Advocacy can range from the actual direction of care provided by staff to working with an ombudsman or other facility officials in an attempt to improve the formal care delivered in a given facility.
Expected Family Involvement Across the Long-Term-Care Landscape
In hypothesizing variations of family involvement across AL and NH settings, we relied on prior work that specified formal/informal care patterns in community settings (Lyons & Zarit, 1999; Noelker & Bass, 1989). Litwak (1985) suggested that the type of task determines how older adults utilize formal and informal sources of care. For instance, formal providers usually carry out caregiving tasks that require specialized skill and are performed at predictable times, whereas informal caregivers perform tasks that require less skill and occur unpredictably. A model developed by Edelman (1986) stipulates that formal support is merely used to alleviate the burden and time demands of tasks already carried out by informal caregivers (i.e., supplementation); in residential care, supplementation may emerge when both informal and formal care providers provide assistance for some care need. Greene (1983) hypothesized that assistance once provided by informal caregivers is eventually replaced by formal care (i.e., substitution). Other models suggest that informal care providers continue to provide the bulk of assistance for certain tasks, even with the introduction of formal care (kin dependence; see Lyons & Zarit, 1999).
This framework of formal/informal care patterns may help to distinguish family involvement among various dimensions of support in AL. As Table 1 illustrates, the nature of formal care in AL and NH care may affect the informal personal care delivered to residents. Informal personal care is more likely to operate according to the substitution model in NHs; for the most part, family members relinquish ADL tasks to facility staff. Due to regulatory concerns, NHs may discourage families from engaging in certain care responsibilities, such as bathing or ambulation, due to potential risk. Although there may be instances when family members still perform certain personal care activities on an intermittent basis in order to maintain intimacy in the care relationship (e.g., helping a relative eat during facility meal time), one can consider the overall pattern of formal/informal personal care in NHs to be substitution. In contrast, some AL residents are less likely to need such care. For those who do, informal care may supplement the formal care provided by AL staff (residents may rely on both family members and AL staff equally to perform certain ADL tasks such as grooming). In other instances, formal care by AL staff or other formal providers may substitute informal care (e.g., ambulation, bathing, dressing). Due to the heterogeneity of care needs and AL service delivery models (which may fluctuate according to various pricing levels), the range of informal and formal personal care in AL may vary considerably.
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Socioemotional support and, by extension, visits, are likely to assume supplemental patterns of formal and informal care across both AL facilities and NHs. Although there may be some variation in the amount of each provided by formal care staff (e.g., if certain AL facilities employ less staff at various shifts, this type of engagement may be offered less frequently), we assumed that regardless of regulatory environment, case mix, or care delivery schedules there would be staff in both types of facilities that provide such support. Formal socioemotional support and visits may occur because they are encouraged by the facility environment (e.g., smaller, family-style types of AL settings) or because of particular staff in each type of setting who are caring and committed to engaging in meaningful relationships with their residents.
In contrast to the other domains of family involvement, we expected that monitoring and advocacy would be more likely to assume a kin-dependent structure. These types of assistance are based strongly in the concept of preservative care (Bowers, 1988), whereby family members play an integral role in attempting to maintain the identity of the relative via these activities. Whereas staff may monitor residents' care provision for reasons related to job responsibilities, families are likely motivated to engage in monitoring or advocacy due to their kin relationship with the relative and their more intimate knowledge of the person the relative is and was prior to entry into a residential setting.
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Survey of the Literature: Families and AL |
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Results
Family Structure in AL
To examine family structure we limited our analysis to studies that included detailed sampling frames of AL facilities and residents at the national, multiregional, state, or regional levels. We excluded studies utilizing convenience samples of AL residents. We included those studies that reported data on at least two key family structure variables (e.g., marital status, living children, traveling distance of nearest family member) and summarize them in Table 2.
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Table 3 provides additional information on three important need characteristics: resident age, cognitive impairment, and functional status. On average, residents in AL are 80 years of age and older, with some samples indicating that more than half of residents are 85 years of age or older (i.e., the oldest old; see Hawes, Phillips, & Rose, 2000; Hawes, Phillips, Rose, Holan, & Sherman, 2003; Zimmerman, Sloane, & Eckert, 2001). Approximately 20% of residents suffer from severe cognitive impairment, with roughly an additional 25% suffering from moderate cognitive impairment. Similarly, roughly 20% of AL residents are dependent in three or more ADLs. These results suggest that although AL residents are not as functionally or cognitively impaired as NH residents (e.g., see Magaziner et al., 2000), for a segment of the AL resident population there are considerable care needs present.
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Several quantitative studies also attempted to identify correlates or predictors of family involvement in AL (Gaugler & Kane, 2001; Gaugler et al., 2003; Hopp, 1999; Port et al., 2005; Pruchno & Rose, 2002; Zimmerman et al., 2003). Of particular interest in these studies were comparisons between various types of AL settings and NH environments. For example, some studies suggested that family members of AL residents are more likely to engage in instrumental/IADL assistance (Gaugler & Kane, 2001; Leon et al., 2000); family interaction (Pruchno & Rose, 2002); and monitoring of cognitively impaired residents' medical, emotional, and financial well-being (Port et al., 2005) when compared to informal care providers of NH residents (although a statewide study of adult foster care found no such differences; see R. A. Kane et al., 1991). Other efforts examined correlates or predictors of family involvement in AL; variables that are consistently associated with greater family visits and more personal/IADL family care include geographic proximity of a family member to the facility (Gaugler & Kane, 2001; Gaugler et al., 2003) and residents who are women (Gaugler & Kane, 2001; Hopp, 1999; Zimmerman et al., 2003). Other variables with significant but diverse effects on family involvement across studies include race/ethnicity, resident length of stay, functional and cognitive status, and age (Gaugler & Kane, 2001; Gaugler et al., 2003; Hopp, 1999; Pruchno & Rose, 2002; Zimmerman et al., 2003). Beyond facility type, no studies examining correlates of family involvement assessed facility-level characteristics in reliable fashion when ascertaining the influence of facility environment on informal care provision (e.g., Gaugler & Kane, 2001; Gaugler et al., 2003).
Although the majority of quantitative studies focused on different types of family involvement once a relative had moved into an AL facility, single studies examined other potential dimensions of family involvement. These included analyses of family members' influence over relatives' decisions to move to apartment-style AL settings and their preferences (Reinardy & Kane, 2003; see also Hawes et al., 2000; Krout, Moen, Holmes, Oggins, & Bowen, 2002; Sales et al., 2005; Silverstein & Zablotsky, 1996; Tornatore et al., 2003). Specifically, family dimensions appear to play an important role as to whether an older adult moves to an AL-style setting, as these various analyses indicated that older adults who are unmarried (Sales et al., 2005), proximal location to family and friends (Krout et al., 2002; Silverstein & Zablotsky, 1996), family preferences for AL (Reinardy & Kane, 2003), and even family abuse (Weatherall, 2001) are all variables that positively influence relocation to AL. As with predictors of NH admission (e.g., see meta-analysis by Gaugler, Duval, Anderson, & Kane, 2007), informal support appears to influence older adults' entry into residential long-term care.
In addition to several case studies (Baldwin & Shaul, 2001; R. L. Kane & West, 2005; Pitts, Krieger, & Nussbaum, 2005), various qualitative efforts explored the process of family involvement in AL. These studies included anywhere from 6 to 78 family members in various types of residential care settings. Seven of these studies took place in the United States (Ball et al., 2004; Carder & Hernandez, 2004; Mead, Eckert, Zimmerman, & Schumacher, 2005; Perkinson, 1995; Sanderson & Meyers, 2004; Schmidt, 1987; Wellin & Jaffe, 2004) and four took place in the United Kingdom (Roe, Whattam, Young, & Dimond, 2001; Seddon, Jones, & Boyle, 2002; Train, Nurock, Kitchen, Manela, & Livingston, 2005; Wright, 2000). Five of these studies relied on semistructured interviews with either family members or residents to inform the process of family involvement in AL, whereas the other six studies relied on multiple informants or participant observation/ethnographic approaches (Ball et al., 2004; Carder & Hernandez, 2004; Mead et al., 2005; Perkinson, 1995; Train et al., 2005; Wellin & Jaffe, 2004). The themes derived from these various qualitative studies overlapped with those of the quantitative studies: Family members remain engaged in socioemotional forms of assistance such as visits and regular contact and are active in monitoring and attempting to preserve the well-being of AL residents. However, family members tend to relinquish more personal forms of care assistance to AL or other formal care providers, implying a substitution model of formal/informal care integration. However, other themes emerged in these qualitative analyses that have been relatively unexplored in quantitative research efforts, such as the importance of prior family–resident relationships in dictating the quality and type of family involvement (Sanderson & Meyers, 2004; Seddon et al., 2002); the role of family-oriented facility characteristics, environment, and policies in affecting family inputs in care planning and decision making (Carder & Hernandez, 2004; Wright, 2000); and "deviant" family caregivers, or those who prefer to operate outside of group norms of family involvement and care (Perkinson, 1995).
Several qualitative studies moved beyond family roles in AL to explore family involvement at various transition points during a relative's stay in AL. A recurring theme in several qualitative studies was the importance of family roles and history prior to admission, such as the role of health problems, emotional stress, and psychological upheaval related to at-home care provision as triggering the need for AL and potentially continuing after entry (Liken, 2001a, 2001b, 2001c; Russell, 1996; Sanderson & Meyers, 2004; Seddon et al., 2002; Wright, 2000). Other qualitative inquiries examined family involvement and transitions from AL; analyses suggested that family intervention and involvement in monitoring care, administering medications, collaborating with staff, and purchasing external formal care services (i.e., home health aides) was key to allowing residents to age in place in AL facilities. However, family members also suggested a degree of comfort in allowing AL directors to make final decisions and judgments in determining whether a relative could remain in the AL setting; families also indicated a lack of formal discussion regarding such matters (Ball et al., 2004; Cartwright & Kayser-Jones, 2003; Mead et al., 2005). Additional qualitative research examined interaction of families with interdisciplinary geriatric care teams at the onset of Alzheimer's disease in AL (Liken, 1999) and with physicians in general (Schumacher, Eckert, Zimmerman, Carder, & Wright, 2005); both studies suggested the need for continuity of physician care in the context of chronic illness in AL, as well as the need to enhance communication in the long-term-care environment between staff, physicians, and family members to improve the delivery of chronic care.
Two additional qualitative studies explored marital status in AL-type settings as dictating the type and degree of social contacts with other residents (Perkinson & Rockemann, 1996) and attempts of married AL residents to continue to maintain their spousal roles when entering a residential care setting (Schmidt, 1987). An ethnographic study of 47 older adults in a continuing care retirement community examined the onset of care provision in such settings. Semistructured interviews and field notes revealed that older residents were active participants in initially eliciting informal care from family members and then engaging in negotiation and evaluation with family caregivers throughout the informal care process. The findings suggest a more dynamic role for the resident than conceptualizations of the passive care recipient that dominate much of the family caregiving literature (Russell, 1996).
Family Involvement and Family Outcomes
Table 5 summarizes available quantitative research on family outcomes in AL. A handful of studies attempted to examine family members' satisfaction with various aspects of the AL environment. Of the four studies that compared resident and family ratings of satisfaction, all but one found that residents reported lower overall satisfaction with the AL environment as well as with specific aspects of the AL environment, AL staff, and AL care provision (Buelow & Fee, 2000; Gesell, 2001; Sloane et al., 2003). The one exception was the work of Levin and Kane (2006), which incorporated ratings of importance for various aspects of AL (e.g., control, care, programs) as well as satisfaction with these dimensions. Levin and Kane found that family members alternatively rated importance as higher on resident control, care provided, and programs offered and satisfaction as lower when compared to residents. Overall, the trend of findings suggests that families and residents view satisfaction and quality of care differently on a number of important dimensions in AL, with residents' satisfaction often lower when compared to that of family members.
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Available qualitative research on family outcomes in AL suggests a process based in preadmission experiences and also indicates important psychosocial outcomes for future consideration. Both positive and negative emotional outcomes for family members may follow a relative's move to an AL facility. For example, in an interview of 20 family members of AL residents, Liken (2001a) indicated that the move resulted in relief for 15 family members due to greater supervision and emotional/personal care provided by the AL facility. Similarly, in their analysis of open-ended responses, Seddon and colleagues (2002) reported that stress decreased due to religious coping, attempts by family members to make each visit as stimulating as possible, and a sense of freedom on the part of family members. Across each of these studies, sustained guilt following a relative's move to AL consistently emerged (Liken, 2001a, 2001c; Sanderson & Meyers, 2004; Seddon et al., 2002). Other negative responses were based in feelings of loneliness and increased strain in the relationship with the relative (Sanderson & Meyers, 2004; Seddon et al., 2002).
A pair of studies examined family members' reactions to end-of-life care in AL. As shown in Table 5, one quantitative study suggested that many family members appeared unaware of a resident's approaching death when compared to families of NH residents (Sloane et al., 2003). Qualitative focus group work indicated a number of concerns family members held regarding palliative care in AL, such as doubts that AL staff could handle the complex personal care and disease management requirements and a perceived lack of communication. However, family members were also vocal in expressing satisfaction with the individuals who provided care for their relatives at the end of life (Dixon, Fortner, & Travis, 2002). These quantitative and qualitative findings suggest important barriers to end-of-life care in AL, as well as the need for greater research in this area.
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Research Recommendations |
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Although prior work on informal and formal care in the community has emphasized the complex relationships between these two sources of assistance (Lyons & Zarit, 1999), quantitative and qualitative research has just begun to explore family integration in AL. As the survey of the literature suggests, families of relatives in AL appear to contribute considerable amounts of instrumental, socioemotional, and monitoring support (along with frequent visits) when compared to other residential settings such as NHs. However, the relationship of facility-level characteristics to family involvement and activities, the longitudinal ramifications of family involvement, the causal processes of family involvement, and effective assessment tools to capture various forms of family involvement are less apparent in the literature. Similarly, few studies have begun to examine the impact of the AL experience on family outcomes beyond ratings of satisfaction. This concluding section offers recommendations designed to guide future research and conceptual work on the process of family involvement in AL.
Nonsimplistic Causal Models of Family Involvement in AL
The review of the literature, particularly the quantitative research, revealed rather simplistic causal models of family involvement in AL. For example, several studies have attempted to determine correlates or predictors of family involvement in AL, such as resident functional status, family members' geographic proximity, and similar characteristics. However, a more dynamic process may influence motivation for involvement on the part of family members. For example, family members could be motivated to provide increased involvement (such as monitoring) because the facility is not offering adequate care or is providing much technical care at the expense of residents' emotional well-being. In other instances, the provision of certain types of assistance (such as socioemotional support) at the expense of more hands-on types of care (i.e., personal, instrumental) may suggest that families are content or comfortable enough to engage in psychosocial forms of support as they relinquish responsibilities related to technical hands-on care to the care facility. Overall, it is difficult to identify the causal direction of family involvement and potential predictors, given the lack of longitudinal research and conceptual models. For example, some studies have indicated that AL resident length of stay and family visits are negatively correlated (Pruchno & Rose, 2002), implying that as AL residents remain in their respective settings for longer periods of time families are less likely to remain involved. However, it may also be the case that family members who are more involved with residents in AL may be more likely to facilitate an earlier move out from AL back to the community or some other setting (as some NH studies have found; see Gaugler, 2005).
Stronger conceptual models are needed to guide the process of family involvement in AL. Some of this work has begun in qualitative research, which has suggested the importance of factors that can influence family involvement and are subject to family involvement (see above). However, quantitative studies have not addressed why various types of family involvement do or do not occur. Incorporation of conceptual models may begin to better address the issue of how families are integrated within the formal care service systems of AL settings (e.g., Gaugler, 2005, p. 114).
We also argue that the consideration of formal/informal care patterns when examining family involvement in AL is useful, as this conceptual approach may acknowledge the place of AL in the long-term-care landscape. As presented in the literature review, how formal and informal care is arranged in AL is dynamic. But are these formal/informal care patterns similar to care arrangements in NHs? It may be that formal care provision in AL is more analogous to that in home care settings, where family members arrange for some formal assistance on certain care tasks (e.g., bathing) and continue to provide considerable informal support for others. The difference in AL is that the resident and/or family has purchased systematic assistance for housekeeping and meal preparation and may negotiate at move in and during the resident's stay for additional types of formal care services (provided by either the facility or some external, contracted organization). Subsequent research that examines the expectations of AL facilities for family care, whether family-level assessments are conducted, the involvement of family members in formal service planning, and programmatic efforts on the part of AL to support families would help to ascertain how formal and informal care in AL operate in relation to home- and community-based settings or more traditional residential contexts.
Differentiating Family Involvement in AL
Quantitative research on family involvement has relied largely on task-based approaches to assessing frequency and type of informal care in AL. However, such approaches may obscure the overlap of certain types of family assistance in AL. For example, the provision of instrumental types of support may be integrated with socioemotional forms of help such as reminiscing with a relative while the family member takes him or her to an appointment. The segmentation of family involvement into various types may increase the risk of double-counting informal assistance.
Reviews of the family caregiving literature suggest that, in comparing various methods of assessing informal care inputs, calendar- or diary-based approaches may most effectively capture the amount and dimensions of informal help provided to disabled older adults (Gaugler, Kane, & Kane, 2002; for an example in AL, see Pruchno & Rose, 2002). For example, a calendar type of instrument can collect information on a daily basis regarding family visits and what occurred during each visit; moreover, administering these measures over time can capture periods of intensified family involvement due to particular crises the AL resident may experience (e.g., the resident falling). Although data monitoring is critical to ensure complete data, the incorporation of these assessment tools (as opposed to forcing respondents to choose categories of family involvement a priori) may capture the empirical richness of family involvement implied in qualitative research.
It is also apparent that few studies have examined family involvement in AL from a dyadic or systems-level perspective. There may be family-level assessment techniques that are important to consider when examining the integration of formal and informal care in AL (e.g., such as those used in family systems theory development and family social science). These approaches may better incorporate the perspectives and importance of the resident in family involvement in AL; as was evident in our review of the literature, the voice of the resident is conspicuously absent from most analyses of family involvement (see Russell, 1996).
Incorporation of Facility-Level Characteristics Associated With Family Involvement
As suggested in the survey of the literature, there are differences in the amount of family support provided to AL or NH residents. Although much of this variation may be due to variations in resident function and cognition, few studies have adequately controlled or adjusted for heterogeneity in samples. Moreover, the examination of facility type, given the extensive diversity in size, staffing, environmental amenities, and other characteristics within and across AL facilities and NHs, may make such comparisons simplistic. There may be a range of facility-level characteristics that could potentially influence or facilitate family involvement in residential settings, such as the family orientation of facilities, or the degree to which facilities encourage family involvement via specific policies and programs (e.g., flexible visiting hours, family participation in service planning; see Friedemann, Montgomery, Maiberger, & Smith, 1997).
Ethnographic studies have explored whether skilled nursing settings such as NHs are able to overcome the notion of institution and instead create a community-oriented context that is integrated within and outside facility walls (Rowles, Concotelli, & High, 1996). Building on this work, research in alternative residential environments has examined factors related to perceptions of AL as home; among these factors is attachment to AL of which perceptions of family involvement in AL is an important factor (Cutchin, Owen, & Chang, 2003). The promotion of these blurred boundaries appears to result in greater resident adaptation to lives in the facility as well as continued connection to roles and lives outside the residential care setting. Beyond facility size and other basic characteristics, no study to date has similarly examined the environmental context of AL and its potential effects on family involvement. One could hypothesize that AL facilities, which actively market amenities such as choice, individuality, and control over one's environment, may facilitate greater family involvement when compared to NHs, even when adjusting for the myriad differences between such settings. However, we argue that such comparisons are not illuminating; more rigorous descriptions of AL facility environment (e.g., via a tool such as the Multiphasic Environmental Assessment Procedure; see Moos & Lemke, 1996) would allow researchers to pinpoint those characteristics and policies that may best influence family integration and resident well-being across the long-term-care landscape.
Family Structure and its Potential Effects on Family Involvement
An additional conceptual limitation in family involvement research is its general focus on available family members. Most research has tended to examine family involvement from the perspective of a primary family member, or that person who is most involved or who feels most responsible for the relative in AL. However, as Table 2 suggests, there are various other configurations worthy of analysis in future research. For example, up to 10% of residents in AL are living with spouses in the facility. How family involvement operates in instances where spouses are living in the AL unit, and presumably providing considerable informal care to each other, may be an important variation of family involvement to explore. Moreover, the general underlying assumption of much of the research is that residents have available family members to rely upon. Some residents have no available family members to provide informal support, and it is not clear whether existing studies of family involvement in AL exclude or consider these individuals in analyses. How formal/informal care patterns operate in situations in which residents have no family members at all would contribute to researchers' understanding and conceptualizations of family involvement across various family structure types.
Longitudinal and Transitional Nature of Family Involvement in AL
The large majority of research on family involvement in AL is cross-sectional. Whether family involvement changes over time, and how such changes are related to facility-level factors or resident function, is relatively unknown. A longitudinal perspective is important; as noted in research on family care in NHs, early cross-sectional studies suggested a negative correlation between family visits and resident length of stay. In contrast, prospective longitudinal designs have suggested more variable and dynamic patterns of change in family visits and involvement than earlier cross-sectional research implied (e.g., Yamamoto, Aneshensel, & Levy-Storms, 2002). Similarly, as the qualitative research highlighted in this review emphasizes, the degree and type of family care provided appears strongly associated with family–resident relationships prior to admission. However, no quantitative study to date appears to have considered family caregiving patterns prior to a relative's move to AL, or the how quality of family–resident relationships during and prior to admission influences family members' involvement or other outcomes. Adopting a transitional perspective in future quantitative research would provide greater insight on the process of family involvement in AL and other long-term-care settings, in contrast to simply describing types and frequency of informal care. Along with providing longitudinal description, researchers should incorporate strategies to address the complications of attrition (see Gaugler, 2005).
Family Outcomes and Intervention in AL
Of the three areas surveyed, family outcomes in AL was the most underdeveloped. It remains unknown how family caregiving roles change prior to and after a relative's admission to AL. The greater family care burden in AL compared to NHs suggests that increased or continued family involvement in various care domains (such as IADLs) may exacerbate caregivers' perceived stress following the care recipient's move to AL. Family stress and other negative outcomes often do not abate with placement in NHs (Schulz et al., 2004). In addition, the care expectations of families or AL facilities themselves (e.g., supplementation care patterns for instrumental or personal care domains) may stress caregivers. It is also possible that family outcomes in AL may require measurement approaches that move beyond traditional domains of stress. For example, assessment of family members' perceptions of role continuity as caregiver or more AL-specific types of family outcome measures (understanding of and satisfaction with disclosure and communication regarding the extent of resident care in AL) may better describe family members' acclimation to AL. Subsequent research examining change in caregiver outcomes across the AL transition could shed greater light on families' adaptation and may also point toward interventions designed to assist families during the AL experience.
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Footnotes |
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1 Center on Aging, Center for Gerontological Nursing, School of Nursing, University of Minnesota, Minneapolis.
2 Division of Health Services Research and Policy, School of Public Health, University of Minnesota, Minneapolis.
Decision Editor: Susan L. Hughes, DSW
Received for publication April 11, 2006. Accepted for publication February 12, 2007.
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