THE SIGNIFICANCE AND POWER OF COMMUNITY: BLACK DEMENTIA CAREGIVERS NAVIGATING CARE SYSTEMS

Sep 28, 2026

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Disproportionate prevalence of Alzheimer’s disease and related dementia in the Black community is expected to raise demand for caregiver support, yet many caregivers struggle to navigate complex U.S. healthcare systems. These barriers can intensify isolation and reduce the quality of care delivered to family members living with dementia. A culturally tailored psychoeducation course, Caregiving While Black LIVE, was created to build community among Black professionals and caregivers. A 6-week Zoom or in-person program with 17 qualitative interviews showed that participation improved understanding, trust, emotional comfort, decision-making, role redefinition, and shared knowledge, highlighting ongoing need for communal learning spaces.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages1

Reading Time3 min

AccessFree to download

Abstract

Background and problem

Intervention: Caregiving While Black LIVE

Study design and participant engagement

Key findings

Implications and future directions

1280 Innovation in Aging, 2025, Vol. 9, No. S2 Abstract citation ID: igaf122.4271 THE SIGNIFICANCE AND POWER OF COMMUNITY: BLACK DEMENTIA CAREGIVERS NAVIGATING CARE SYSTEMS Janelle Gore1, Mayra Sainz2, Larry Strickland3, Stephanie Bennett2, Carolyn Clevenger2, and Fayron Epps3, 1. The University of Alabama, Tuscaloosa, Alabama, United States, 2. Emory University, Atlanta, Georgia, United States, 3. UT Health San Antonio, San Antonio, Texas, United States As the prevalence of Alzheimer’s Disease and related dementia continues to disproportionately affect the Black community, the need to support caregivers is also expected to increase. A challenge many Black dementia caregivers face is navigating care systems due to the complexities of healthcare in the US. These difficulties can increase levels of isolation, in turn affecting the quality of care provided to their family member living with dementia. Thus, a psychoeducation course, Caregiving While Black LIVE, was developed to foster a community of Black health professionals and caregivers to equip and empower Black dementia caregivers with the sense of mastery needed to navigate care systems while acknowledging the social and cultural realities. Caregivers participated in the 6-week course, led by facilitators, meeting weekly with a group of 6 to 15 Black dementia caregivers either via Zoom or in person. Individual qualitative interviews were conducted with 17 of the 40 study participants to explore their experiences in the course. Most caregivers were women, with an average age of 57. Analysis revealed that participating in a culturally tailored psychoeducational program influences Black dementia caregivers’ experiences navigating care systems by 1. Enhancing understanding, trust, and emotional comfort, 2. Empowering ability to make informed decisions, 3. Redefining the caregiving role, and 4. Sharing knowledge within the community. Culturally tailored programming remains a critical need for Black dementia caregivers. Researchers should work to increase the development of spaces that promote communal learning to boost confidence and improve health outcomes for families affected by dementia.

FAQs

Why are Black dementia caregivers finding it harder to get effective support?

Many caregivers face difficulties navigating complex U.S. healthcare systems. These challenges can increase isolation and affect the quality of care they provide.

What is the Caregiving While Black LIVE program?

It is a culturally tailored psychoeducation course designed to foster community and equip Black dementia caregivers with mastery for navigating care systems. The course ran for 6 weeks with weekly group meetings via Zoom or in person.

What benefits did participants report from the program?

Analysis indicated improvements in understanding, trust, and emotional comfort; greater ability to make informed decisions; redefinition of the caregiving role; and increased sharing of knowledge within the community.

Sep 28, 2026

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