Coming out to care: gay and lesbian carers’ experiences of dementia services

Abstract

This article reports on findings from a qualitative study, undertaken in England that explored the experiences of 21 gay men and lesbian women who care, or cared, for a person with dementia. The aim of the study was to explore how a person's gay or lesbian sexuality might impact upon their experience of providing care in this context. This paper reports on one theme that emerged from the wider study--carers' experiences of 'coming out' to service providers. Respondents were recruited using 'snowballing' methods and the study employed semi-structured interviewing techniques. Data collection occurred over a protracted period (2003-2007), the time scale being determined by (the well documented) difficulties in recruiting respondents from this group of people. Data analysis was undertaken with the intent of developing common and contrary themes using a constant thematic comparative method. The results reported here demonstrate the ways in which carers mediated disclosures of their sexualities to health and social care service providers and, for some, their wider support network. For many carers, responses to these disclosures proved to be a critical issue and one that coloured their experience of providing care. Service providers' reactions are demonstrated as being characterised by, at best, a broad acceptance of gay and lesbian people's circumstances, through to a pervasive disregard of their needs.

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

“…"Treating everyone the same" is not the right approach because it equates equality of opportunity with equality of outcome (Price, 2010). Absence of recognition of individual differences and needs results in discriminatory and oppressive services perpetuating inequality and discrimination.…”

“…Eight of the 17 papers included case reports (Anetzberger, 2004;Ward, 2000), an article describing the development of a telephone support group for gay and lesbian people living with dementia (Moore, 2002), and five qualitative studies describing the experience of LGBT people living with dementia and their family caregivers (Barrett, Crameri, Lambourne, Latham, & Whyte, 2015;Price, 2008Price, , 2010Price, , 2011Price, , 2012.…”

“…The recognition of their status as a minority within a minority leads LGBTQIA+ caregivers to experience stress when facing potentially unsafe healthcare environments, which causes isolation and unmet needs. In a follow-up qualitative study with 21 gay men and lesbian women who care, or cared, for a person with dementia, "coming out to service providers" emerged as the main theme (Price, 2010). "Coming out" or the fact of proclaiming one's sexual orientation or gender identity to oneself and, subsequently to others can produce anxiety when it has to be done with multiple healthcare providers.…”

How do lesbian and gay people experience dementia?

“…For some, this overlapped with sexual orientation leading to a 'double stigma', which could potentially threaten personhood for LG individuals. Price (2010) reported responses to sexuality disclosure mediated…”

“…Again, it is not known how relationships and attachments with significant others work to maintain personhood for LG people with dementia. Price interviewed 21 gay men and lesbian women caring for someone with dementia (Price, 2010(Price, , 2012 and many reported experiences of heterosexism. These experiences led to fears that carers themselves may develop dementia and have their sexuality negatively perceived when accessing support.…”