LGBTQ+ COMMUNITIES & DEMENTIA ENGAGEMENT REPORT JUNE 2018 Switchboard, June 2018 The Brighton & Hove Clinical Commissioning group has commissioned Switchboard (formerly ‘Brighton and Hove LGBTQ Switchboard’) to conduct a series of consultation and engagement activities with Brighton & Hove and Sussex-based lesbian, gay, bisexual, trans and queer (LGBTQ+) people affected by dementia, and the professionals and volunteers supporting them. This engagement work will be used to inform how LGBTQ people affected by dementia can be best supported; and to identify areas where improvements to patient experience can be made. Please note, the following report presents information about the consultation and engagement work conducted by LGBTQ Switchboard, and should not be taken as a position statement of Brighton and Hove LGBTQ Switchboard or of any participating organisation. 1 Switchboard, June 2018 Table of Contents Executive Summary ................................................................................................................................. 3 Background ......................................................................................................................................... 3 Overview of Engagement .................................................................................................................... 3 Key Findings ........................................................................................................................................ 4 Recommendations .............................................................................................................................. 8 Terminology ............................................................................................................................................ 9 Introduction .......................................................................................................................................... 10 Engagement Overview ...................................................................................................................... 11 Methodology ..................................................................................................................................... 12 LGBTQ+ & Dementia: What We Already Know .................................................................................... 13 LGBTQ+ Health Inequalities and Dementia Risk Factors .................................................................. 13 LGBTQ+ Inclusion Barriers in Mainstream Services .......................................................................... 14 LGBTQ+ Specific Impacts of Dementia .............................................................................................. 20 Switchboard’s Rainbow Café ............................................................................................................ 22 Review of Existing LGBTQ+ Dementia Engagement and Research ................................................... 23 Survey: Professionals and Volunteers Supporting People Affected by Dementia ................................ 32 Summary ........................................................................................................................................... 32 Demographics ................................................................................................................................... 33 Survey responses .............................................................................................................................. 38 Survey: LGBTQ+ People Affected by Dementia .................................................................................... 55 Summary ........................................................................................................................................... 55 Demographics ................................................................................................................................... 56 Survey responses .............................................................................................................................. 62 Key Findings .......................................................................................................................................... 77 Recommendations ................................................................................................................................ 83 Resources .............................................................................................................................................. 87 References ............................................................................................................................................ 88 Thanks & Acknowledgments ................................................................................................................. 90 Key Contacts.......................................................................................................................................... 90 2 Switchboard, June 2018 Executive Summary Background According to one estimate, there are around 56,000 lesbian and gay people living with dementia in the UK (McParland & Camic 2016). However, taking into account trans, non-binary, bisexual, queer and other (non-cis, non-heterosexual) sexual and gender identities, the number is likely to be significantly higher. This figure would also not take into account numbers of those living with, but undiagnosed, with dementia, and the large numbers of those who care and support a family member, partner or friend with dementia. Brighton & Hove CCG indicates that there are 1811 patients with dementia aged 65+ currently on their lists, and that there may be approximately 1000 more who are as yet undiagnosed. Utilising the common ‘1 in 10’ statistic regarding LGBTQ+ identity, this means there may be at least 280 LGBTQ+ people living with the condition in Brighton and Hove alone. Again, however, adding to this carers and those under 65 living with the condition, the number is likely to be much higher. While the Department of Health’s 2009 National Dementia Strategy helped to raise the profile of dementia and promote it up the national agenda, it did not make any reference to the particular needs of LGBTQ people. Indeed, while a current lack of standardised monitoring of sexual orientation, gender identity and trans status on both local and national levels, means that the actual statistics of LGBTQ+ people affected by dementia are unknown, it is clear from the estimated statistics this group represents a sizeable population. However, as Roger Newman (2012), an LGBTQ+ dementia activist and former carer of a partner with the condition, notes, it is a population that remains “largely invisible to both policy makers and practitioners”. In the past five years, however, there has been significant research and engagement activity within the voluntary sector and academia to understand the needs and experiences of this under-served group, from which this report draws to inform its recommendations. It is Switchboard’s hope that this piece of engagement can further extend the body of research around LGBTQ+ needs and dementia, to help inform the discussion on better serving the intersectionally diverse communities represented within this broad group at both local and national levels. Overview of Engagement From April to June 2018, Switchboard’s Health and Inclusion Project (HIP) carried out engagement with the LGBTQ+ community and health and social care providers on the subject of LGBTQ+ people affected by dementia: their experiences in relation to living with the condition and of accessing care and support. The aim of the engagement was to understand the specificities of LGBTQ+ experiences in relation to dementia, and the challenges and opportunities of these communities in accessing dementia care and support in Brighton and Hove and Sussex. As part of this engagement, we carried out two online surveys: one for LGBTQ+ people affected by dementia, for which we received 14 valid responses, and one for the professionals and volunteers who support them, for which valid responses from 21 individuals were gathered. We also reviewed existing literature and engagement on LGBTQ+ experience and dementia, and drew from Switchboard’s experience through the Rainbow Café – a monthly social meet-up for LGBTQ+ people affected by dementia or concerned about memory loss. 3 Switchboard, June 2018 Key Findings The findings of Switchboard’s surveys echoed and extended many of the existing findings of other organisations’ engagement and research with LGBTQ+ people on the topic of dementia, and included the following key points. LGBTQ+ people continue to face significant barriers to accessing dementia care and support, with 64% of LGBTQ+ 64% of LGBTQ+ people affected by respondents providing at least one example of an LGBTQ+ dementia surveyed said they had based barrier, including having experienced homo-, bi- or experienced some form of gender trans-phobia from staff (20%). Among other reported barriers, it was found that more than two thirds reported a or sexual orientation based lack of LGBTQ specific information and resources as a barrier to accessing dementia care barrier, followed by hetero- and cis-normativity, at nearly 1 and support. in 3 respondents. Echoing the findings of HIP’s Inclusion Award engagement, confidence and trust in health and social care services to provide LGBTQ+ inclusive care was relatively low, with just short of a