Black caregivers of people with dementia share their perspectives on a care coordination intervention.
Maximizing Independence at Home (MIND) is a home-based intervention designed to help provide high-quality, holistic care coordination for people and families living with dementia. This study highlights findings from a focus group of Black caregivers on care needs and challenges of caregiving for people with dementia in the Black community, the perceived benefits of the MIND program, and ways the program can be more culturally responsive.
The focus group participants shared they had limited access to dementia information, supports, and services due to a general lack of understanding of Black communities by health care providers, continued discrimination in health care, racial inequities in access to services, mistrust of outside care partners, financial challenges, and geographic limitations associated with caregiving. They felt the MIND program offered them comprehensive needs assessments, assistance in locating resources, and opportunities for social interaction as well as respite from their caregiving duties. Suggestions to improve the MIND program from caregivers included increased staff diversity and greater clarity and consistency in program promotion and communications.
Providers and health plans designing long-term care coordination programs for people with dementia and their caregivers in Black and other under-resourced communities should be inclusive, culturally appropriate, and incorporate input from the communities served.