Lived Experience,Identity,and Perspectives of LGBTQ+ Alzheimer’s and Dementia Caregivers: A Qualitative Analysis from the Rise Registry

Abstract

Although caregiving research has expanded over the years, LGBTQ + caregivers of individuals with Alzheimer’s disease and related dementia (ADRD) remain understudied. LGBTQ + ADRD caregivers encounter unique obstacles (e.g., elevated stress, barriers to inclusive services, stigma and discrimination) that complicate caregiving experiences and have been understudied in research. To address these obstacles, researchers created the RISE Registry, a national network to engage LGBTQ + individuals in ADRD research. Semi-structured interviews (individual and focus groups) were facilitated with LGBTQ + ADRD caregivers (n = 44). Thematic analysis of the interviews revealed substantial caregiver burden, often compounded by a disconnect between their identities and perceived expectations of caregiving. Caregivers cited conflicting family obligations, limited support resources, and non-affirming services, though some found assistance or respite through veteran or faith-based organizations. These findings underscore the burden and unmet needs of LGBTQ + caregivers, targets that are crucial to address to improve well-being among LGBTQ + caregivers.