Experiences of caregiving with Alzheimer’s disease in the LGBT community

Abstract

Abstract Background The goal of this paper is to develop a more thorough understanding of the experiences of LGBT older adults living with dementia and their caregivers. Methods A phenomenological approach using in-depth interviews with current or former caregivers of LGBT persons living with Alzheimer’s disease (AD) was conducted. Results Participants ranged in age from 44–77 years old; 74% were lesbian, 16% gay, 5% straight, and 5% unknown. Five themes were identified from the analysis: Caregiver tension and isolation; financial stress & security; lack of social support & connection; engineering grief support, and entrapment of past and present stigma and discrimination. Conclusions Discrimination related to LGBT status was an important theme over the participants’ lives and occurred for several during dementia care. While other themes were similar to prior AD studies, LGBT status affected these other aspects of the caregiving experience. Findings can inform future programs that better meet needs of LGBT people and those who care for them.

Keywords

• LGBT caregivers
• LGBT older adults
• Health disparities
• Surrogate decision making
• Phenomenology