Familial caregivers of Black older adults with Alzheimer’s disease and/or related dementias (ADRD) are a vulnerable population with multiple risk factors associated with new onset ADRD and premature death. Specific stress-related risk factors with a higher prevalence among Black caregivers, such as high blood pressure and obesity, may be reduced through targeted caregiver interventions that improve caregiving self-efficacy, or perceived ability to provide care, and self-management of chronic disease. Though evidence suggests that culture plays an important role in caregiver outcomes, few interventions are specifically designed to meet the needs of underserved racial and ethnic populations. Programs like REACH II and Savvy Caregiver that have included Black caregivers, have not had significant effects on chronic health outcomes, or have focused exclusively on cognitive behavioral therapy (CBT) with limited inclusion of other domains of care. Furthermore, access to caregiver support programs is often limited by specific health system membership, geography, or care recipient disease state. There is a need for targeted, community-based health interventions to help Black caregivers effectively manage their own health and use personally relevant ways of coping, or cognitive and behavioral efforts to manage stress. By studying the adaptive coping strategies most prominent amongst caregivers and understanding both their personal health needs and caregiving responsibilities, appropriate participant informed interventions may be developed. Pilot funding from the Center for Complexity and Self-management of Chronic Disease at the University of Michigan School of Nursing, will facilitate the intervention development process by allowing for initial feasibility testing of a questionnaire and self-assessment techniques designed to evaluate caregiver outcomes including: physical functioning, available social supports, coping, psychological distress, self-efficacy in both chronic disease self-management and caregiving, as well as positive aspects of caregiving. In particular, the questionnaire and self-assessments will be evaluated for response burden. The preliminary data provided by this study will allow for the completion of a power analysis to determine the necessary sample size for future study and is a first step towards clinical trial development.

The central hypothesis of this work is that the shared values, beliefs, and customs that create communities extend to ways of coping. Identifying and reinforcing the adaptive coping strategies communities prefer to use, strengthens the health of both the community and the individual. This hypothesis has been formulated on the basis of a previous study in which a community of Black older adults with chronic severe pain used adaptive coping strategies inclusive of positive reappraisal, social supports, and spirituality to maintain function and independence. As a result of adaptive coping, the older adults had the ability to care for others, found satisfaction in their caregiving work, and experienced spiritual well-being and decreased psychological distress. The rationale for the proposed research is that completing feasibility testing prior to initiating the full study will provide the opportunity to test recruitment methods and determine participant burden in completing the survey tools and self-assessment measures. Furthermore, we will be able to evaluate our ability to measure study variables as expected and determine effect size for future studies. Ultimately, this pilot work will help to identify feasibility concerns that may be modified and will result in a larger study in the future.
The specific aims of the pilot project icnlude:

• Specific Aim #1: To conduct a pilot, descriptive study to evaluate the feasibility of recruiting Black caregivers of persons with ADRD, and their ability to complete a battery of assessments that measure function, social support, coping, caregiving self-efficacy, self-efficacy for managing caregivers’ chronic disease, psychological distress, positive aspects of caregiving, blood pressure, and weight (year 1). Participant recruitment will take place primarily through participant registries that target minority older adults. Process outcomes to be evaluated, include recruitment success and ease of assessment completion.
• Specific Aim #2: To evaluate the effects of physical function, social supports, coping, caregiving self-efficacy, self-efficacy in managing personal health, psychological distress, and positive aspects of caregiving (year 2). Preliminary effects may be evaluated and used for power analysis.
• Specific Aim #2: To develop the necessary skills and experiences that will lead to a successfully funded R34 planning grant to continue clinical trial develop of the intervention. This aim will be accomplished through effective collaboration and mentorship provided by senior researchers affiliated with CSCD, and the experiential training that will occur with the completion of the prior aims.

This work addresses a clinical void in culturally responsive health interventions developed for Black ADRD caregivers. Few studies have examined how stress-related modifiable health risks may be reduced through participant informed community-based support programs that encourage self-management of health.