TY - JOUR
T1 - Transcending inequities in dementia care in Black communities
T2 - Lessons from the maximizing independence at home care coordination program
AU - Sloan, Danetta H.
AU - Johnston, Deirdre
AU - Fabius, Chanee
AU - Pyatt, Tabitha
AU - Antonsdottir, Inga
AU - Reuland, Melissa
AU - Spliedt, Morgan
AU - Samus, Quincy M.
N1 - Publisher Copyright:
© The Author(s) 2022.
PY - 2022/7
Y1 - 2022/7
N2 - Purpose: We examine care partners’ experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. Method: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014–2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. Findings: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a “much needed break for care partners.” Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. Conclusion: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.
AB - Purpose: We examine care partners’ experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. Method: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014–2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. Findings: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a “much needed break for care partners.” Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. Conclusion: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness.
KW - community-based dementia care
KW - dementia care coordination
KW - dementia care in Black American populations
KW - dementia caregiving
KW - equity in dementia care
UR - http://www.scopus.com/inward/record.url?scp=85131159862&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85131159862&partnerID=8YFLogxK
U2 - 10.1177/14713012221085808
DO - 10.1177/14713012221085808
M3 - Article
C2 - 35634792
AN - SCOPUS:85131159862
SN - 1471-3012
VL - 21
SP - 1653
EP - 1668
JO - Dementia
JF - Dementia
IS - 5
ER -