How do lesbians and gay men experience dementia?

Introduction: The subjective experience of dementia for lesbian and gay individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population.A second aim was to develop understanding of these experiences within dyadic relationships.

Method: Ten semi-structured interviews were conducted with lesbian and gay individuals with dementia and people with whom they had a significant relationship and analysed using interpretative phenomenological analysis.

Results: Three superordinate themes, reflecting characteristics of participants’ experience, were identified: duality in managing dementia, giving yourself away vs. holding onto yourself and relationships as sheltered harbours. Ten subthemes indicated the processes that were adopted to adjust and make sense of the experience of dementia. These included decisions around concealment, ensuring safetyand the promotion of personhood and couplehood. In line with findings for heterosexual couples,partners had an important role in maintaining the identity of the person with dementia.

Conclusions: Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. In response to these conditions, interviewees worked to resist a ‘double stigma’ of dementia and sexuality. Findings indicated areas of improvement for dementia services, including training in inclusive practice.