Caregiving While Black-LIVE: Empowering Black Dementia Caregivers to Navigate Care

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Project Summary/Abstract In the best of times, Black caregivers are under duress. Black Americans have more than twice the prevalence of Alzheimer’s disease and related dementias than Whites, thus increasing the number of Black family members providing care for persons living with dementia disorders like Alzheimer’s disease (PLWD). For Black dementia caregivers, the overlay of health disparities and systemic discrimination adds substantially to the taxing challenges of caregiving and contributes to heightened adverse outcomes for these caregivers and PLWD. Black Americans are disproportionately burdened by the cultural and practical reality of Black caregiving in America. This disadvantaged group faces unique, long-established stressors and vulnerabilities that inform their experiences and affect their well-being. Black caregivers have greater care responsibilities which contribute to greater risks for negative health effects than for white caregivers. For this proposal, we are seeking to develop a broadly accessible, synchronous/asynchronous course for Black family caregivers who provide care for PLWD, Caregiving while Black-LIVE ((Learning In Vital Engagement). This course seeks to equip and empower Black dementia caregivers with the knowledge, skills, and sense of mastery they need to address and cope effectively within their role broadly, not just in the context of the pandemic. We seek to promote caregiving self-efficacy in Black caregivers while acknowledging the social and cultural realities of this historically minoritized racial and ethnic group. We propose the following aims: Aim 1. Using an iterative, user-centered design approach, reconfigure the Caregiving while Black asynchronous program into a manualized and substantially more interactive online synchronous (facilitator-guided, face-to-face) and asynchronous (self-paced) interactive psychoeducation course, Caregiving while Black-LIVE. Aim 2. Assess the feasibility, usability, acceptability, and preliminary efficacy of the Caregiving while Black-LIVE course, employing a mixed-methods pre-post no control design to gather formative and evaluative data from four cohorts (n=10 each) of Black caregivers. We will employ established instruments to gather baseline and immediate post-course data on caregiving mastery, health literacy, and emotional well-being (i.e., stress, anxiety, and burden). Exploratory Aim. Determine sustained effects in engaging in Caregiving while Black-LIVE by collecting data 3 months after course completion. It is our long-term goal for this course to enhance caregiver mastery, promote solution-focused coping and produce positive outcomes in Black caregivers. This project moves beyond existing psychoeducational programs and interventions that merely provide dementia-related or crisis management education to family caregivers by keeping the issues of equity at the forefront of caregiver education. This project is the next step in establishing a scalable and effective culturally relevant psychoeducation course to mitigate the effects of structural racism by supporting the practices and traditions of caregiving in the Black community.