Supporting ADRD care partners from historically and currently underserved communities

Abstract

AbstractSupports for people living Alzheimer’s disease and related dementias (ADRD) and their care partners in the US remain limited. Historically and currently underserved populations in health care experience particularly stark disparities in accessing ADRD‐specific care and supports. To inform enhanced outreach and supports for underserved populations in ADRD care, and to better understand how state and federal policies can help support this goal, a study was conducted to gather insights from the perspectives of individuals with lived experience as care partners, with an emphasis on communities historically and currently underrepresented in ADRD research, for whom culturally appropriate services for people living with ADRD may be non‐existent or difficult to access.The study population focused on care partners of people living with ADRD who identify with historically and currently underserved communities including Black, Indigenous, Asian, and Latinx Americans in the Portland, Oregon region. Recruitment strategies for potential focus group participants were developed in collaboration with leaders of Portland‐area community‐based organizations that provide ADRD care and supports. Focus groups were convened with care partners from these four communities, along with one focus group with individuals who identified with other communities.ADRD care partners across all populations reported a need for additional supports to help them manage care‐related activities. The specific needs and supports identified varied across populations. The findings also indicate widespread unmet care partner needs across all populations, including more information on ADRD, financial and psychological supports, in‐home care, and respite services. While many care partners were generally satisfied with their clinical care and research involvement, nearly all identified potential areas for further supports, suggesting an opportunity for coproduced supports, services, and policies.Innovative approaches to service delivery and policy development should be pursued in order to better support care partners of people living with ADRD. US policymakers could coproduce policies through direct collaboration with care partners, researchers, and clinicians by co‐designing and implementing policies focusing on improving the care partner experience. In moving toward equitable service provision, offering specific and unique supports for care partners from underserved communities who may have difficulties accessing culturally appropriate services must be a priority.