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

Abstract

AbstractBackgroundExisting 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.MethodAging 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.ResultAmong 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.ConclusionThe 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.