Designing a Culturally Tailored Formal Care Decision-Making Intervention for African American Dementia Dyads and Families

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PROJECT SUMMARY/ABSTRACT African American (AA) older adults have a greater risk of developing Alzheimer's disease and related dementias (ADRD) when compared to non-Latinx White older adults, which increases the number of caregivers for this racial group. AA caregivers are predominantly daughters of AA persons living with ADRD (AA PLWDs). These adult daughters and their families must navigate formal care decisions for their AA PLWDs, which have associated health disparities. These health disparities result in AA PLWDs experiencing greater morbidity and worse quality of life. There are no structured programs specifically aimed at guiding AA parent-adult daughter dementia dyads' and families' formal care decision-making processes for AA PLWDs, and AA caregivers tend to exhaust informal caregiving sources before using formal care. My preliminary research focused on AA dementia dyads (i.e., AA PLWDs and their AA caregivers) found that AA non-spouse (primarily adult daughters) dementia dyads both experienced worse quality of life than both members of AA spouse caregiver dementia dyads, supporting our focus on AA adult daughter caregivers. In addition, AA caregivers identified a lack of cultural tailoring of formal care as a barrier for use by AA PLWDs and desired more family involvement when making formal care decisions for AA PLWDs. Aligned with the National Institute of Aging's Behavioral and Social Science high-priority dementia caregiver research, the K23 award aims are to: 1) examine the influences (i.e., behavioral, sociocultural, and environmental) on the formal care decision- making process and the quality of life of AA PLWDs and their AA adult daughter caregivers, 2) describe the decision-making processes of members of AA parent-adult daughter dementia dyads that affect current and future formal care use for AA PLWDs and explore how these processes influence the quality of life of both members of these dyads, and 3) design and test the feasibility of a prototype intervention for AA parent-adult daughter dementia dyads and families to enable them to develop tailored strategies to support the formal care decision-making process for AA PLWDs. Building on my training as a clinician with expertise in ADRD caregiving, I will: 1) develop expertise in multidisciplinary decision-making models that can be adapted to conduct culturally-relevant research within AA dementia dyads and families, 2) acquire skills in analyzing quantitative, qualitative, and mixed-methods dyadic data for intervention development, and 3) obtain expertise using intervention mapping and design thinking for the development, implementation, and evaluation of intervention studies. I have assembled an excellent team of mentors (Drs. Hepburn, Powell, and Lyons) and consultants (Drs. Whitlatch, Dunbar, Higgins, and Yeager). The K23 award will provide me with the necessary foundation to become an independent nurse scientist dedicated to improving the quality of life of AA dementia dyads and families, which ideally aligns with NIA's mission to “understand health disparities and develop strategies to improve the health status of older adults in diverse populations.”