Transcending Inequities in Dementia Care in Black Communities: Lessons From the MIND Care Coordination Program
Abstract Resolution of ongoing inequities in dementia care requires careful examination of how care is delivered to ensure we are aware of, and meeting needs for all people affected, especially those most vulnerable and in under-resourced communities. Maximizing Independence at Home (MIND) is a multicomponent, home-based dementia care program designed to provide high quality, wholistic care coordination for to persons and families living with dementia. Program goals are to delay transition from home, improve life quality, and reduce unmet care needs. We completed three focus groups (n = 25) with Black (e.g., African American) dementia caregivers who received the intervention to understand (1) the unique dementia related needs of Black dementia caregivers and barriers and challenges to caregiving experienced within the Black community , (2) perceived benefits of MIND, and (3) ways to improve the MIND intervention. Participants noted three overarching themes related to needs and challenges in dementia care in the Black community: difficulty finding and accessing dementia information, help, and related services; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding benefits of the program, four themes emerged including that the program helped find resources (formal and informal); provided caregivers an opportunity for socialization and interaction; included comprehensive assessments and helpful linked information; and resulted in a “much needed break.” Increased diversity of MIND personnel and greater clarity and consistency in MIND program promotion and communications were themes for how the program could be improved.