Building Community and Research Engagement among Sexual and Gender Minority Older Adults at Risk for Alzheimer’s Disease and Related Dementias

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Abstract By 2030, there will be nearly six million sexual and gender minority (SGM) older adults aged 50 and older in the U.S. who identify as lesbian, gay, bisexual, transgender, and/or queer. This number will more than double by 2050. Approximately 350,000 SGM older adults in the U.S. currently are living with Alzheimer's disease and related dementias (ADRD), with projections nearing one million by 2030. SGM older adults experience greater health disparities than their heterosexual counterparts. Several recent studies have shown a higher prevalence of risk factors for ADRD, including higher rates of cardiovascular disease, hypertension, diabetes, depression or frequent mental distress, and subjective cognitive decline. In addition, SGM older adults are less likely to have informal caregiving support and for those with caregivers, their caregivers often lack access to inclusive services and resources. Research participation from SGM older adults is extremely limited and the sparse research suggests that SGM older adults are interested in being engaged in research, but concerns regarding the lack of inclusive services and mistrust need to be addressed to improve participation in ADRD research, including clinical trials and intervention research studies. To overcome these barriers to participation in ADRD- related research, this study will implement culturally appropriate and inclusive recruitment strategies aimed at engaging, recruiting, and retaining SGM older adults with ADRD and SGM caregivers in research. This will be accomplished through (1) the development of a national network of existing SGM organizations, programs, and academic institutions to engage SGM people with ADRD and SGM ADRD caregivers in clinical research; 2) establishing a sustainable research registry of SGM people with ADRD and SGM caregivers by developing, implementing, and evaluating tailored recruitment and engagement programs, for use by ADRDc and clinical research institutions; and 3) the development of a replicable model for recruitment and retention of SGM people with ADRD and SGM caregivers in ADRD and aging-related research. Our collaborative team will address the National Institute of Aging's Strategic Directions for Research on Aging “F-3: Develop and implement strategies to increase inclusion of diverse populations in research.”