Investigating the lived experience of LGBT+ people with dementia and their care partners: a scoping review

Citation

Smith L, Chesher I, Fredriksen-Goldsen K, Ward R, Phillipson L, Newman CE & Delhomme F (2022) Investigating the lived experience of LGBT+ people with dementia and their care partners: a scoping review. Ageing and Society. https://doi.org/10.1017/s0144686x22000538

Abstract
Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia.

Keywords
dementia; LGBT+; gender and sexuality diverse; scoping review; lived experience; care partners

Notes
Output Status: Forthcoming/Available Online

Journal
Ageing and Society

People

Dr Richard Ward

Senior Lecturer in Dementia, Dementia and Ageing