The Social Context of Live Discharge from Hospice for Family Caregivers of Patients with Alzheimer's Disease and Related Dementias - PROJECT SUMMARY/ABSTRACT Hospice care improves end-of-life outcomes for adults with Alzheimer's Disease and Related Dementias (ADRD),1-2 yet with eligibility limited to a six-month prognosis, hospice is not structured to meet longer-term needs.3 Many older patients stabilize, or have a change in prognosis, leading to a `live discharge.' Patients with dementia are more likely to experience a live discharge compared with other diagnoses, particularly after 6 months of care without presence of an acute event, indicating they are removed due to decertification.4-6 In 2018, 6.3% of all hospice discharges were patients discharged alive due to no longer meeting eligibility requirements (nearly 90,000 patients annually).7 Patients with dementia are utilizing hospice at increasing rates and represent the fastest growing group of hospice users.8 With increasing hospice enrollments overall,7 live discharges are expected to increase9 and patients with dementia are those most likely to be impacted. Our study is informed by the ecological model of resilience for caregivers,20 which has been adapted for family caregivers of hospice patients with ADRD.21 This model conceptualizes caregivers' social contexts as sources of potential `resilience resources' that offer protection against harmful effects of caregiving stress. We propose a mixed method, cross-sectional study to assess the role of social context among ADRD caregivers following a live discharge from hospice. Specific aims are 1) To explore how family caregivers' social context influences their service utilization patterns and experiences of care transitions following live discharge due to decertification of a hospice patient with ADRD; and 2) To conduct a preliminary evaluation of the relationships between perceived social support, loneliness, and social isolation and caregiver well-being, quality of care transitions, and continuity of care as reported by family caregivers immediately following live discharge due to decertification of a hospice patient with ADRD. Persons living with dementia experience more care transitions on average than patients without dementia.56 Yet, little is known about the core elements of a successful transition among this population and the increased likelihood for hospitalizations and fragmented care leaves patients with ADRD and their caregivers with unmet and underexplored needs.57 This study is the first to systematically examine how family caregivers' social contexts shape experiences and subsequent outcomes of live discharge, a phenomenon that impacts patients with ADRD disproportionately more than other diagnoses. Participants (caregivers of patients with ADRD diagnoses) will automatically enroll from the parent study (N=20-25), which will be supplemented with added quantitative measures describing caregivers' social contexts, and each will participate in a qualitative interview. Findings will be vital in our efforts to identify potential interventions to support family caregivers through this often unexpected and challenging care transition, enhancing post-discharge service utilization and improving overall well-being as they engage in caring for the ever-increasing number of Americans living with ADRD.
