Caring for a loved one with dementia can be emotionally and physically demanding. For Black families, those responsibilities may come with additional challenges, including healthcare disparities, barriers to accessing support services, and the need to navigate a healthcare system that does not always account for their cultural experiences. These challenges highlight an unmet need in supporting Black caregivers and their families.
A new clinical trial is exploring whether culturally tailored interventions could help reduce the burden and strain on Black caregivers caring for loved ones with dementia.
Researchers at Emory University are exploring whether culturally tailored education could better support Black dementia caregivers through a program called Caregiving While Black. The clinical trial was designed to evaluate an online educational program intended to strengthen Black caregivers’ confidence and ability to care for family members or friends living with dementia. Rather than testing a medical treatment, the study focuses on caregiver education, skills, and well-being.
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The program aims to equip Black American caregivers with practical knowledge and skills to navigate dementia care. Its educational content addresses three important areas: navigating healthcare, managing responsibilities at home, and practicing self-care.
Researchers designed the intervention with the understanding that caregiving doesn’t happen in a vacuum. A person’s cultural background and experiences with the healthcare system can influence how they access resources, communicate with providers, and manage caregiving responsibilities.
The study planned to enroll 140 participants and randomly assign them to two groups: one that would access the Caregiving While Black program immediately, and the other that would receive usual care before accessing the educational program after three months.
Researchers followed participants for six months, with assessments at baseline, 10 weeks, and six months. They primarily evaluated changes in caregiver mastery, or how confident participants felt about managing different caregiving situations.
The study focused on adults who identified as Black American and served as the unpaid primary caregiver for a person living with dementia in a community setting. Participants needed to be at least 18 years old, provide some hands-on care multiple times a week, and serve as the primary companion during healthcare appointments. Caregivers also needed access to an electronic device and internet service and the ability to understand English. Those who didn’t live with the person receiving care were still eligible to participate.
Past clinical trials of the Caregiving While Black program suggest it may continue to deliver promising results for Black caregivers. In a 2024 pilot study published in The Gerontologist, researchers followed Black dementia caregivers who took the online course. Of the 75 people who enrolled, 32 completed it within the 10-week study period.
Those who completed the program reported feeling less burdened by their caregiving responsibilities and experiencing less role strain. They also reported fewer negative reactions to dementia-related behavioral challenges, such as changes in a loved one’s mood or behavior.
The course also appeared to help caregivers feel better equipped to handle everyday challenges. Participants’ caregiver mastery scores increased by an average of 0.45 points. However, that improvement was not statistically significant.
Participants also appreciated seeing their experiences reflected in the course. Interviews with 29 caregivers revealed that they valued learning about healthcare advocacy, navigating disparities, and finding community resources.
While the findings are promising, the pilot was relatively small and lacked a control group. More research is needed to determine whether the program consistently produces these benefits in a larger group of caregivers.
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The earlier 2024 study findings offer an encouraging look at the potential of culturally relevant education for Black caregivers. However, they should not be interpreted as proof that the larger clinical trial achieved the same results.
The 2026 study has since been marked as completed, with 140 participants enrolled. The registry information reviewed for this article didn’t include its results.
By examining how education can support caregivers’ confidence and day-to-day responsibilities, the research contributes to a broader conversation about making dementia care more accessible and responsive to Black families’ needs.
As research continues, Black caregivers can find support through several resources, including:
If you’d like to participate in future clinical trials for Black caregivers, visit BlackDoctor’s Clinical Trials Resource Center or ClinicalTrials.gov.
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