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

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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 researcher conducting rigorous qualitative research on health inequity and end-of-life disparities in African Americans.