The Longitudinal Implications of Unmet Need in Chronic Family Care

Alzheimer's family caregiving has remained one of the major focal points of gerontological study, and much research has described who family caregivers are, the range and amount of assistance family members provide to their elderly relatives, and the emotional and psychological consequences of intensive family care (e.g., Aneshensel et aI., 1995; Gaugler et al., in press; Montgomery & Williams, 2001, to name a few). Unmet need has also received some attention in empirical analyses and reviews (Allen, 1994; Montgomery & Kosloski, 2000; Ory et al., 2000). However, the longitudinal implications of unmet need for caregivers and comparisons of unmet need across chronic care situations (e.g., dementia, cancer, and stroke caregivers) have been relatively unexplored. This proposal details a comprehensive effort to analyze the longitudinal implications of unmet need among 750 caregivers of individuals suffering from a range of disabilities (i.e., Alzheimer's, cancer, or stroke). This 2-year, multi-faceted study has 3 linked components: 1) an empirical determination of how unmet need changes over time for caregiving families; 2) an analysis of how changes in unmet need influence important caregiving outcomes (emotional and psychological distress); and 3) an examination of how unmet need changes with the onset of important transitions in the caregiving career (e.g., community-based service use, hospitalization, institutionalization). It is anticipated that the outcomes of this analysis will assist researchers, policymakers, and practitioners develop approaches that help alleviate the challenges facing caregiving families over time. Key features of the proposed study are briefly summarized below: . The study will include adults (55 years of age or over) who suffer from Alzheimer's disease, stroke, or cancer, providing a heterogeneous group of individuals and caregiving situations for empirical study. The diversity of the sample will add to the generalizability and applicability of the findings. . The analysis will identify the importance of unmet need over time for caregivers in various situations; although it is often assumed that unmet need is deleterious, this study will directly test this assertion. Such information will help to refine our understanding of the negative implications of unmet need, particularly among family caregivers of relatives suffering from dementia. . The longitudinal emphasis of this study will offer a unique contribution. Many prior studies of caregiving are cross-sectional, and the proposed analysis will take a more dynamic approach. Specifically, this study will analyze whether unmet need increases or decreases over time for various types of caregivers. In addition, the prospective longitudinal design will allow us to ascertain how unmet need changes with important health-related transitions in the caregiving career, such as communitybased service use, hospitalization, and institutionalization. Subsequent analyses will highlight the specific challenges these events 'pose to family caregi~ers, and whether health-related transitions actually benefit farmly members by reducmg unmet need.