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The needs of lesbian, gay, bisexual and trans* people (LGBT) who are affected by dementia: A comprehensive scoping review. Joanna Semlyen, Department of Psychology, London Metropolitan University Joanne Brooke, College of Nursing , Midwifery and Healthcare, University of West London
BACKGROUND In the UK it is estimated that 850,000 people are living with dementia (Alzheimer’s Society 2014). Reports suggest 5-7% of the population identify as LGBT (Aspinall 2009). Evidence suggests that the LGBT population delay in accessing healthcare and experience heteronormative and homophobic health and care services (McNair and Hegarty 2010). There is a need to determine existing knowledge about the needs of the LGBT population who are affected by dementia in order to inform future practice, research and policy. AIM To undertake a comprehensive scoping review of the literature to explore the needs of people who identify as lesbian, gay, bisexual or trans* (LGBT) and are affected by dementia. METHODS Medline, CINHAL, Science Direct, Embase and PsychINFO databases were systematically searched for literature published from 1st January 2006 to 31st December In addition Google Scholar and Cochrane Database were searched, hand searching of reference lists of full papers and grey literature were completed and authors were contacted where necessary. Only studies exploring LGBT populations and Dementia were included, no further predetermined criteria was applied. A comprehensive search strategy was used to search for papers using exploded terms for Dementia and lesbian, gay, bisexual and trans*. All searches were limited to “English Language”. Diagram 1: Flow diagram of identification of relevant articles RESULTS Results indicate the inclusion of 15 papers describing 13 studies. Qualitative studies (n=5), quantitative (n=1), mixed methods (n=1) case studies (n=4), reflective research (n=2). Papers had lesbian (n=37), gay (n=52) and bisexual participants (n=12). No studies included any trans* participants.
DISCUSSION AND FINDINGS LGBT caring for someone with dementia Papers explored issues relating to caring for someone with dementia as an LGT identified individual. Price (2011) found lesbians caring for a parent with dementia needed to negotiate new relationships with their biological family while receiving support from their family of choice. Further, experiences of caring and disclosure of sexuality influenced lesbian and gay carers’ beliefs and expectations of how their own healthcare needs would be met (Price 2010, 2012). Impact of Dementia for the LGBT partner As well as exploring the invisibility of a same sex partner (O’Connor et al. 2010), studies looked at the impact of dementia on relationships experienced by LGB couples. For example in Muracos study, the highs of the situation were seen as a strengthening of their relationship, whereas lows were expressed by the person with dementia as feeling as if they were burdensome and by the carer as fearing an inability to meet their partner’s needs (Muraco 2013). Healthcare staff attitudes to LGBT sexuality in dementia Studies showed negative attitudes to sexual expression between same-sex couples (Di Napoli 2013) by healthcare staff, in female same-sex couples (Lightbody 2014) and male same-sex couples (Tzeng et al. 2009). In one study offering an educational intervention, staff attitudes became more permissive of expressions of sexuality among same-sex couples with dementia (Bauer et al. 2013). Care Home residents attitudes to LGBT in dementia Studies also found that residents expressed negative opinions regarding same-sex relationships in people with dementia within care home settings (Frankowski and Clark 2009). Service provision for LGBT with dementia Studies found people with dementia demonstrating non-disclosure due to fear of discrimination (Mackenzie 2009). Moreover that actual disclosure led to needs being ignored such as provision of care and bereavement counselling (Archibald 2006, Clover 2006, Hughes 2008). Challenges of entering heterosexual care homes included isolation and loneliness (Duffy and Healy 2014). CLINICAL IMPLICATION Early findings indicate homophobic and heteronormative experiences of LGBT people affected by dementia in care settings. Recommendations include a need for more training and awareness raising about individual needs regarding sexuality and dementia, across all health and care settings regarding dementia care.
References: Alzheimer’s Society (2014). Dementia 2014: Opportunity for Change. Alzheimer’s Society, London.
Aspinall, P. (2009). Estimating the size and composition of the lesbian, gay and bisexual population in Britain. Equality Human Rights Commission. Research Report 37.
UK. McNair, R. P., & Hegarty, K. (2010). Guidelines for the primary care of lesbian, gay, and bisexual people: a systematic review. The Annals of Family Medicine, 8(6),
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