Reaching the Underserved in Dementia Research: IDEA (Innovations in Empowerment and Action)

Karen Fredriksen-Goldsen, Linda Teri, Hyun Jun Kim, Brittany R. Jones, David M. La Fazia, Glenise McKenzie, Ryan Petros, Char Brown, Charles A. Emlet

Research output: Contribution to journalComment/debatepeer-review


Background: Existing research has documented higher levels of cognitive impairment among marginalized populations, including among LGBT (lesbian, gay, bisexual, and transgender) older adults. Research has also found LGBT older adults living with cognitive impairment experience a unique and challenging context compared to their heterosexual and cisgender peers. However, there remains a paucity of research regarding culturally appropriate dementia interventions and services that are responsive to the needs, risks, and protective factors of such underserved populations. Method: Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action) is the first federally funded study to test an intervention designed to address the distinct needs of LGBT older adults with cognitive impairment and their caregivers. The study design compares a specialized LGBT enhanced program to a pre-existing standard dementia program (RDAD), which provided the foundation for the project. This presentation will examine the ways in which the demographic profile and the recruitment and retention findings differ for this population compared to most existing dementia intervention research. Result: Among the LGBT older adults living with cognitive impairment in this study, 74.8% identified as gay or lesbian and 7% as bisexual; 6.3% as transgender. Among caregivers, this was 69.9%, 15.4%, and 7%, respectively. People of color accounted for 16.8% of care recipients and 23.1% of caregivers. Care recipients were significantly more likely to initiate contact to enlist in the randomized controlled trial (RCT) compared to caregivers. One-third of care recipients had a non-partner/spouse caregiver supporting them in this dyadic intervention; 15.4% had a friend in the care partner role. The most common reason for study ineligibility was not having a care partner to participate and about 12% terminated from the program because of difficulty within the care partner/care recipient dyad. Conclusion: The current study built a strong research-community partnership necessary for the development and implementation of the intervention. The information gained in this study regarding recruitment, retention, and implementation is valuable for developing interventions that can be tailored to the distinct needs of communities that have traditionally been underserved in dementia research.

Original languageEnglish (US)
Article numbere063212
JournalAlzheimer's and Dementia
Issue numberS8
StatePublished - Dec 2022

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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