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African-American Dementia Caregivers’ Perceptions, Skill, and Mental Health Outcomes

Research Team

Fawn Cothran, Principal Investigator, Rush University College of Nursing
Carol J. Farran, Mentor, Rush University College of Nursing

Award Period


Funding Agency

John A. Hartford Foundation


Dementia family caregivers often experience stressful caregiving demands and identify coping with dementia related behavioral symptoms as the most stressful. Dementia-related behavioral symptoms have a prevalence rate as high as 92%, consume up to 30% of all dementia related costs in the community, and further exacerbate other stressful caregiving demands. For African American (AA) caregivers, compared to non-Hispanic Whites, increased frequency of dementia-related behaviors and simultaneous presentation of three or more behaviors lead to increased strain and upset. Because AA dementia caregivers often spend more time in the caregiving role, less frequently use formal support/resources, and are disproportionately affected with poor health and shorter survival, chronic stress from caregiving and the burden of health disparities may create “a double jeopardy” for poor health outcomes. The limited research that exists of AA caregivers suggests that they may have different perceptions of dementia related behavioral symptoms and may have less access to resources needed to replicate skills necessary for behavior management; but few studies have examined how the stress of caregiving affects their mental health changes over time.
Guided by the stress process model, the proposed research study will answer the following research questions: 1) Are there racial differences in stressors and resources for caregivers of persons with dementia, and 2) Are there racial differences in how stressors and resources influence mental health outcomes over time? We will use existing data from the Telephone Resources and Assistance for Caregivers (TRAC) study, (Farran, R01 NR009543) a randomized clinical trial of caregiver skill building with over 200 AA (n=56) and Caucasian (C) caregivers. Data on stressors (i.e. care recipient behavioral symptoms), resources (i.e. caregiver skill) and mental health outcomes (i.e. caregiver burden) were collected over 18 months. Secondary data analysis will be examined at baseline and longitudinally on a 2:1 matched sample of AA and C caregivers, to increase power, using multiple linear regression and repeated measures models fit using generalized estimating equations (GEEs) or repeated mixed models with random effects. Overall, study findings will increase understanding of AA dementia caregiving and mental health changes. Further, study findings will provide a foundation for the culturally tailored development and testing of future interventions targeting AA and assist them in: developing skill in addressing behavioral symptoms and improving their mental health.


For more information about this project, please contact:
Fawn A. Cothran
Phone: 312.563.7525