Improving hospice care for racial and ethnic minoritized older adults with Alzheimer’s Disease and Related Dementias (ADRD)
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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.
