# Hospice exposure and utilization among older African Americans with ADRD and their decisional support persons

> **NIH NIH F31** · OHIO STATE UNIVERSITY · 2024 · $27,508

## Abstract

PROJECT SUMMARY/ABSTRACT
Alzheimer’s disease and related dementias (ADRD) affect approximately 50 million [1] people worldwide, with
African Americans facing an increased risk of developing this life-limiting disease characterized by the eventual
loss of cognitive ability and independence. ADRD has an unpredictable trajectory, making end-of-life planning
in conjunction with primary family caregivers imperative, including considering the use of hospice services.
Despite the benefits of hospice, African Americans underutilize the services, often opting to undergo
aggressive and costly end-of-life treatment. African Americans are also at increased risk of dying in the
hospital. Barriers to hospice use in African Americans include medical mistrust, lack of knowledge, and lack of
congruence between the patient’s values and the hospice philosophy. However, in-depth exploration of the
sources of and perceptions about hospice information, especially among persons with ADRD, has garnered
little attention. Understanding the sources from which older African Americans living with ADRD and their
primary family caregivers, who often serve as decisional support persons, receive hospice information and how
hospice exposure influences decision-making may better inform hospice decision-making conversations. In this
exploratory, qualitative study, we will conduct in-depth semi-structured interviews with approximately 30 former
family caregivers of older African Americans who lived with ADRD to (1) identify the sources and
characteristics of hospice information exposure and (2) explore the perceived credibility and effectiveness of
hospice information and the influence of the information on the hospice decision-making process. Former
family caregivers have a wealth of experience and can provide a unique perspective on the hospice decision-
making process. Findings will inform the development of culturally appropriate instruments to identify hospice
information sources, decision-making, and future interventions to improve hospice utilization and reduce end-
of-life disparities in older African Americans living with ADRD. The proposed research and training plan aligns
with the National Institute of Nursing Research Strategic Plan on health equity and social determinants of
health. The proposed study builds on the applicant’s knowledge of health inequity and disparities, hospice
underutilization in African Americans living with ADRD, and qualitative methods. Training will focus on
acquiring the skills needed to conduct independent research on hospice exposure and its contribution to
hospice decision-making in older African Americans with ADRD and their primary family caregivers, qualitative
and community-based research, and advancing the scientific understanding of end-of-life care disparity and
hospice utilization in this population. The training plan, fellowship co-sponsors, and research team experts will
prepare the applicant for a career as an independent researche...

## Key facts

- **NIH application ID:** 10844368
- **Project number:** 5F31AG084376-02
- **Recipient organization:** OHIO STATE UNIVERSITY
- **Principal Investigator:** Emika S. Miller
- **Activity code:** F31 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $27,508
- **Award type:** 5
- **Project period:** 2023-05-03 → 2024-11-02

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10844368

## Citation

> US National Institutes of Health, RePORTER application 10844368, Hospice exposure and utilization among older African Americans with ADRD and their decisional support persons (5F31AG084376-02). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10844368. Licensed CC0.

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