# The Social Context of Live Discharge from Hospice for Family Caregivers of Patients with Alzheimer's Disease and Related Dementias

> **NIH NIH R21** · SAINT LOUIS UNIVERSITY · 2021 · $183,071

## Abstract

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...

## Key facts

- **NIH application ID:** 10287324
- **Project number:** 3R21NR017978-01A1S1
- **Recipient organization:** SAINT LOUIS UNIVERSITY
- **Principal Investigator:** Cara L Wallace
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $183,071
- **Award type:** 3
- **Project period:** 2020-09-08 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10287324

## Citation

> US National Institutes of Health, RePORTER application 10287324, The Social Context of Live Discharge from Hospice for Family Caregivers of Patients with Alzheimer's Disease and Related Dementias (3R21NR017978-01A1S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10287324. Licensed CC0.

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