ABSTRACT - In the United States, one in three older adults dies with or from Alzheimer's Disease and Related
ADRDs (ADRD). The Medicare Hospice Benefit is considered the gold standard for end-of-life palliative care,
offering interdisciplinary care in all settings for 52% of Medicare decedents. Yet the role of hospice for ADRD is
complex. Our research indicates half of older hospice enrollees have ADRD and home- and community-
dwelling people with ADRD who enroll in hospice have higher end-of-life care quality and lower costs than
those not enrolled. On the other hand, access to hospice is restricted to a prognosis of 6 months or less, which
for ADRD is difficult to estimate. Standard palliative care models are also not tailored for ADRD-specific needs
such as managing behavioral symptoms. Moreover, there are inequities in access to and quality of end-of-life
care for underserved populations of racial and ethnic minoritized people with ADRD. (To highlight the effect
structural racism has had in producing underserved populations, we use “minoritized”). Black, Latinx, and
Asian American people are less likely to enroll in hospice, particularly with ADRD. Efforts to reduce inequities
in hospice and palliative care are limited by a lack of understanding of how racism impacts access, quality, and
fit of hospice care for racial and ethnic minoritized people with ADRD.
We aim to address these knowledge gaps and improve hospice, palliative, and supportive care for Black,
Latinx, and Asian American people with ADRD. We will convene community and scientific advisory councils to
partner with our team in refining study design, execution, and dissemination. Our aims are: (1) To identify
Black, Latinx, and Asian American care partner definitions of high-quality ADRD end-of-life care. Interviews
with 90 people will ask about experiences with provision of hospice care and other types of supportive care,
often in home-based settings. (2) To document hospice organizational practices and policies that influence
care for racial and ethnic minoritized people with ADRD. We will conduct case studies of 24 organizations
using multiple qualitative methods, including organizational surveys, observations (including of home-based
clinical and symptom management), document analysis, and interviews with providers and staff. (3) To develop
a community-prioritized set of recommended services, clinical practices, and policies for improving hospice
care for ADRD. We will use 6 focus groups (n=30) and a 3-stage modified Delphi process (n=60) with care
partners, policy makers, clinicians and researchers with expertise in hospice, palliative care, ADRD, equity.
Knowledge gained from this proposal will facilitate the development of professional and ethics guidelines, and
policy and regulatory recommendations, to improve end-of-life care and equity in hospice care for racial and
ethnic minoritized populations with ADRD. Improving end-of-life palliative care for ADRD aligns with NIA
strategic directions for 2020-2025 to support research that improves our understanding of ADRD, informs
policy decisions, and supports the goals of the National Plan to Address Alzheimer's Disease.
