Promoting Inclusion of Sexual and Gender Minority Individuals in Aging and Alzheimer’s Disease and Related Dementias Research

Abstract

AbstractBackgroundIt is estimated that more than three million older adults aged 60+ in the U.S. identify as a sexual and gender minority (SGM) or lesbian, gay, bisexual and/or transgender or gender non‐binary, queer, intersex, asexual, and people with a gender identity, gender expression, or reproductive development that varies from traditional, societal, cultural, or physiological norms. SGM adults experience health disparities and many of these health disparities are risk factors for cognitive decline and Alzheimer’s disease and related dementias (ADRD). These risk factors include higher rates of subjective cognitive decline, cardiovascular disease, hypertension, diabetes, and depression compared to non‐SGM adults.MethodWe will describe community‐based participatory research approaches for engaging and recruiting SGM older adults into aging and ADRD research. We will describe best practices for collecting gender identity, sex assigned at birth, and sexual orientation. We highlight ways of reshaping healthcare practices and the broader system changes that are needed to ensure SGM people living with ADRD and their families (chosen and/or biological), receive culturally appropriate, person‐centered, and equitable care.ResultHistorical and ongoing social, structural, and institutional factors (stigma; oppression, discrimination; social exclusion; maltreatment by the healthcare system, healthcare professionals, and researchers) have created barriers for inclusion of SGM communities in health research and this may also extend to aging and ADRD research. We discuss how The RISE (Research Inclusion Supports Equity) Study is establishing a mutual commitment with SGM communities by building trust and on existing strengths, resources, and relationships within SGM communities are all necessary to promote SGM engagement and inclusion in research.ConclusionSGM persons living with ADRD and their care partners, as well as SGM ADRD caregivers in general are underrepresented in aging and ADRD research. These communities also experience structural, social, and financial barriers in accessing aging and healthcare services. Thus, there is a critical need for training and future research. We recommend that researchers and clinicians help advance equitable practices for SGM inclusion in research as it is necessary to improve the health and care of SGM communities affected by ADRD globally.