Effects of the NYU Caregiver Intervention-Adult Child on Residential Care Placement

The New York University (NYU) Caregiver Intervention (NYUCI) is designed to enhance social support to facilitate caregiver well-being. In a series of evaluations, Mittelman and colleagues found that NYUCI counseling and support enabled spouse caregivers to postpone nursing home admission for persons with Alzheimer’s disease (AD; Mittelman et al., 1993; Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996; Mittelman, Haley, Clay, & Roth, 2006). The results of the NYUCI have amply demonstrated the potential benefits of a multifaceted approach in spousal care contexts. We conducted this single-blinded, randomized controlled evalua tion to determine whether the NYUCI could also prevent or delay residential care placement for persons with AD or a related dementia (ADRD) who were cared for by their adult children. This would broaden the NYUCI’s potential impact, especially in communities where spouses are less likely to be caregivers than adult children (as is the case in some of the sites participating in NYUCI demonstration projects across the United States; Rosalynn Carter Institute for Caregiving, 2012). AD Caregiver Interventions A number of studies have demonstrated the adverse effects of dementia care on family members, including impaired physical health and immune system response, financial strain, degradation in social well-being, and increased symptoms of depression and anxiety (Liu & Gallagher-Thompson, 2009). As evidence accumulated on the ramifications of dementia family care, a series of intervention strategies were developed and evaluated. The premise of these approaches was that certain aspects of dementia caregiving (e.g., implementing caregiver strategies to manage dementia-related symptoms; bolstering resources through enhanced social support; Zarit, 2009) are modifiable and can improve key outcomes such as emotional stress and depressive symptoms on the part of the caregiver. Meta-analyses and systematic reviews of ADRD caregiver interventions have found that multicomponent intervention protocols that include combinations of individual- and group-based counseling (e.g., the NYUCI; Resources for Enhancing Alzheimer’s Caregiver Health) are potentially more effective than those with single modalities, although most interventions have not targeted care recipient institutionalization (Brodaty, Green, & Koschera, 2003; Sorensen, Pinquart, Habil, & Duberstein, 2002; Zarit, 2009). Adult Child Caregivers of Persons With ADRD Daughters, wives, and husbands make up the three largest groups of family caregivers (Wolff & Kasper, 2006). Prior descriptive research has shown that there are differences between spouses and adult children in care provision and well-being. For example, spouses of persons with ADRD tend to provide more comprehensive and extensive care than adult children because they are more likely to live in the same household as the care recipient and be more emotionally invested and morally obligated to provide care for the impaired wife/husband (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Montgomery & Williams, 2001). However, longitudinal studies of dementia caregiving have concluded that adult children who are primary caregivers of their parents are more likely to be adversely affected by caregiving when multiple life-course responsibilities are superimposed on dementia care (Aneshensel et al., 1995; Li, Seltzer, & Greenberg, 1997). A systematic review of 40 ADRD caregiver interventions found that most either included both spousal and adult child caregivers or focused solely on spousal caregivers (Cooke, McNally, Mulligan, Harrison, & Newman, 2001). Those that included both groups generally did not report results for spouses and adult children separately. One meta-analysis of interventions that compared adult children and spouses found that adult children were more likely than spouses to show slight improvements in burden, depression, well-being, and ability/knowledge in response to treatment (Sorensen et al., 2002). In contrast, Gitlin and colleagues (in a randomized controlled evaluation of a home-based educational and environmental modification intervention) reported that spousal caregivers reported decreases in feelings of upset for a 6-month period but adult children did not, which may be explained by the higher levels of upset and depression experienced by spouse caregivers at the time of enrollment (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001; Gitlin et al., 2003). A quasi-experimental/nonrandomized evaluation of a multicomponent intervention in southern Sweden that included 5 weekly counseling sessions and a 3-month “conversation group” (N = 308) for dementia caregivers of various kin relations found that adult children in the treatment group (n = 91) significantly delayed nursing home placement for 6 months compared with adult children in the control group (n = 101; Andren & Elmstahl, 2008). Residential Long-term Care and ADRD Persons with ADRD utilize nursing homes much more frequently than those without ADRD; among every 1,000 Medicare beneficiaries with ADRD in 2008 there were 349 skilled nursing facility stays compared with 39 stays for every 1,000 Medicare beneficiaries without ADRD (Alzheimer’s Association, 2012). Delaying or preventing nursing home admission can potentially reduce emotional costs to family members as well as financial costs to Medicare and Medicaid (both of which reimburse such care for individuals with ADRD). Concerns regarding prevention or delay of nursing home admission extend to other residential care settings. Due to the high out-of-pocket costs of assisted living services (estimated at $41,724 per year; Alzheimer’s Association, 2012), residents often spend down their assets and ultimately require Medicaid assistance (Mollica, 2009). The number of residents in assisted living facilities covered by Medicaid has also increased more than 100% since 2002 (Mollica, 2009). Thus, delaying admission to assisted living settings and nursing homes may postpone when the care of persons with dementia becomes a public responsibility by reducing the costs of care borne by Medicaid. Research Focus The original NYUCI targeted spouse/partner caregivers of people with dementia. Although the experiences of adult child caregivers are different in many ways from those of spouses (as mentioned earlier), we believed that the NYUCI’s individualized and multifaceted approach to enhancing social support would offer similar benefits to adult child caregivers and the parents for whom they provide care. Should this be demonstrated, the NYUCI could be offered as an evidence-based intervention not only to spousal caregivers but also to adult child caregivers as well (Rosalynn Carter Institute for Caregiving, 2012). Therefore, this study tested the hypothesis that a comprehensive, multicomponent protocol based on the NYUCI and adapted for adult child caregivers (NYUCI-AC) would prevent or delay residential care placement (i.e., 24-hr residential care such as nursing homes or assisted living) for parents with ADRD compared with parents of adult children not receiving the NYUCI-AC.