# Determinants of End-of-Life Care Experiences among Assisted Living Residents with Alzheimer's Disease and Related Dementia

> **NIH NIH R01** · BROWN UNIVERSITY · 2022 · $732,433

## Abstract

PROJECT SUMMARY
A growing number of older adults with Alzheimer’s Disease and Related Dementias (ADRD) are receiving care
and dying in assisted living (AL). By 2015, 18.4% of community deaths among fee-for-service Medicare
beneficiaries receiving hospice took place in AL. A number of recent studies have raised concerns about the
quality of end-of-life care delivered in AL. For example, AL residents on hospice were less likely to receive
opioids for pain than were individuals with home hospice. Moreover, given the reliance on hospice claims data
to study end-of-life care in AL to date, we have limited knowledge about AL residents who die without hospice
services. If we are to inform policies and practices that promote better quality end-of-life care in AL, there is a
critical need to examine the determinants of dying experiences for AL residents with ADRD, nationally. Using a
methodology developed by our team to identify Medicare beneficiaries who resided in large AL communities
(25+ beds), we propose to identify decedents with a stay in AL, and to examine their end-of-life care
experiences. The overall objective of this application is to identify the determinants of better end-of-life care
experiences in AL through administrative claims data, a survey of AL administrators, and interviews with the
next of kin of AL decedents. We plan to accomplish the overall research objective by pursuing a mixed-
methods approach to the following specific aims: 1) examine time spent in AL during the last month of life and
potentially burdensome care (i.e. transitions in last three days of life and repeated hospitalizations) for an
ADRD AL decedent cohort and determine if differences exist between states with and without supportive end-
of-life regulations, 2) document end-of-life care processes using data from a national survey of AL
administrators, and examine the association between these processes, state regulations, and time spent in AL
in the last month of life and burdensome transitions for an ADRD decedent cohort, and 3) explore perceptions
of the quality of end-of-life care received by ADRD AL decedents through in-depth qualitative interviews with
next of kin, from a purposeful sample of ALs with more vs. less established end-of-life care processes in states
with and without supportive end-of-life regulations. The expected outcomes from this proposal include a better
understanding of state regulations and processes of care that will improve care of persons with ADRD dying in
AL. The proposed research will ultimately guide policy and practice decisions to ensure that AL residents
receive high quality end-of-life care.

## Key facts

- **NIH application ID:** 10409653
- **Project number:** 5R01AG066902-03
- **Recipient organization:** BROWN UNIVERSITY
- **Principal Investigator:** Emmanuelle Belanger
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $732,433
- **Award type:** 5
- **Project period:** 2020-04-15 → 2024-03-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10409653

## Citation

> US National Institutes of Health, RePORTER application 10409653, Determinants of End-of-Life Care Experiences among Assisted Living Residents with Alzheimer's Disease and Related Dementia (5R01AG066902-03). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10409653. Licensed CC0.

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