Assessing the needs of Black/African American dementia caregivers seeking emotional support

Julie A. Fields, Leah K. Forsberg, Matthew Knutson, Sara J. Seifert, Emily A. Farah-Milller, Jodi L. Melius, Joel K. Miller, David S. Knopman, Bradley F. Boeve, Ronald C. Petersen, Kevin M. Kramer, Angela M. Lunde

Research output: Contribution to journalArticlepeer-review


BACKGROUND: Black/African Americans (B/AA) are nearly twice as likely as White/European Americans (W/EA) to have Alzheimer's or other dementias and are more likely to provide care for persons with dementia (PwD). Evidence indicates that B/AA desire having someone to talk with who understands their caregiving challenges, yet are less likely than W/EA to ask for support. Further, community resources supporting caregivers' ability to maintain health and well-being developed with input from B/AA are lacking. We aimed to determine how a technology-assisted caregiver matching service designed with user input could address diverse caregiver needs. METHODS: For this Phase I project, 32 caregivers of PwD (31% B/AA) participated in semi-structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web-based prototype and matching algorithm were developed. RESULTS: Age and sex distribution were similar between B/AA and W/EA (71 and 68 yrs; 90% and 86%, respectively). W/EA were most likely caring for a spouse/significant other (73%) whereas B/AA were caring for spouse/significant other (30%), a parent (30%;18% W/EA), a sibling (10%; 0% W/EA), or other (30%; 9%W/EA). Level of emotional support was rated "poor" (50% B/AA, 18% W/EA); "average" (0% B/AA, 14% W/EA); "good" (40% B/AA, 41% W/EA); and "excellent" (10%, 27% W/EA). Characteristics B/AA deemed "very important" or "absolutely essential" for a supportive match included living in close proximity, same ethnicity, similar lifestyle, and common values. Alternatively, W/EA selected similar age, living in close proximity, same sex, similar lifestyle, common values and interests, having the same caregiving relationship, and having the same diagnosis in their PwD (see chart). CONCLUSION: In this cohort, B/AA reported poorer levels of emotional support than W/EA. B/AA were equally likely to be supporting a spouse/significant other as a parent or other acquaintance, whereas W/EA provided support primarily for a spouse/significant other. Characteristics B/AA and W/EA consider important in a supportive caregiver match show important differences that should be considered when optimizing caregiving resources. Phase II will explore further in a much larger sample.

Original languageEnglish (US)
Pages (from-to)e056579
JournalAlzheimer's & dementia : the journal of the Alzheimer's Association
StatePublished - Dec 1 2021

ASJC Scopus subject areas

  • Epidemiology
  • Health Policy
  • Developmental Neuroscience
  • Clinical Neurology
  • Geriatrics and Gerontology
  • Cellular and Molecular Neuroscience
  • Psychiatry and Mental health


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