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Symposium

Behavioral and Social Sciences

Addressing the Needs of African American Bereaved Dementia Caregivers

Wednesday, November 8, 2023
10:30 AM – 12:00 PM ET
Location: Room 111

Within the next 10 years there will be at least 9 million NEWLY Bereaved Dementia Caregivers, disproportionately affecting African American families due, in part, to dementia prevalence that is twice that of White counterparts. Up to 26% of Bereaved Dementia Caregivers experience pathologically prolonged or exacerbated grief, often referred to as complicated grief or prolonged grief disorder: 2.5x the rate of other chronic disease care contexts, like cancer. The present project used an asset-based approach to assess the needs and resources of African American Bereaved Dementia Caregivers. This project was conducted with community members and university members serving as Co-Principal Investigators. Community PIs lead a grassroots organization that has served Bereaved Dementia Caregivers since 2016. The University PI leads a research team devoted to understanding and improving the experience of Bereaved Dementia Caregivers. The present symposium will discuss the challenges and opportunities offered by this unique collaboration and insights gleaned by a project designed to serve doubly underrepresented groups: African American Bereaved Dementia Caregivers (who sometimes call themselves the “ultra-invisible”). Because this was a project funded through grant dollars, we will also discuss actionable insights that we hope may help others develop fruitful academic-community partnerships. Finally, we will share recruitment strategies for speaking with minoritized populations and insights from engaging gleaned through conversations with African American Bereaved Dementia Caregivers.

Learning Objectives:

  • Discuss unmet needs identified by African American Bereaved Dementia Caregivers
  • Identify how to develop collaborative partnerships between community and academia that will be competitive for funding and help serve unmet needs
  • Understand the nature of a unique group to help former dementia caregivers re-engage with life after bereavement.

Presentations:

  • 10:30 AM – 12:00 PM ET
    Building the Collaborative Community-Academic Team, Designing Objectives, and Getting Funded

    Individual Symposium Abstract First Author: Zachary G. Baker, PhD (he/him/his) – Arizona State University

  • 10:30 AM – 12:00 PM ET
    Not Knowing Other African American Bereaved Dementia Caregivers: Semistructured Interview Results

    Individual Symposium Abstract First Author: Ashley Millenbah, MPH (she/her/hers) – University of Minnesota

  • 10:30 AM – 12:00 PM ET
    “Ah, a Program for Former Caregivers. What a Great Idea! Why Don't You Start Something?”

    Individual Symposium Abstract First Author: Sheryl A. Fairbanks, BA (she/her/hers) – University of Minnesota

  • 10:30 AM – 12:00 PM ET
    Recruiting the Minoritized: African American Bereaved Dementia Caregivers

    Individual Symposium Abstract First Author: Robbin H. Frazier, BSBA (she/her/hers) – University of Minnesota, Center for Healthy Aging and Innovation