Bring Dementia Out

Bring Dementia Out is our new programme to address the challenges faced by LGBT people living with dementia and those who are supporting them.

The programme is supported by the Guinness Partnership, and we will be working in partnership with; National Dementia Action Alliance, Switchboard (Brighton & Hove), National LGB&T Partnership and LGBT Consortium. The programme originated from an innovation project led by Alzheimers Society, and continue to provide guidance and advice to the partnership led by LGBT foundation.

Evidence tells us that there are currently 850,000 people living with dementia in the UK, and this is set to almost double to 1.6 million people by 2040 (Alzheimers Society). However, due to a lack of monitoring of sexual orientation, gender and trans status across the board, accurate figures for those identifying as lesbian, gay, bisexual and trans (LGBT) do not exist.

One government estimate states that 5-7% of the UK population are LGB (Dept. of Trade and Industry ‘Final Regualtory Impact Assessment: Civil Partnership Act’ 2004) and a further 1% of the UK population are trans and gender variant (GIRES, 2012). This means there could be as many as 68,000 LGBT people living with dementia in the UK.

To address the lack of visibility of and awareness of LGBT people living dementia in dementia care and housing services, our new programme will develop training which will encourage the accurate monitoring of residents, service users and clients, as well as support dementia and housing organisations to understand and address the challenges LGBT people living with dementia face.

Due to the long history of discrimination experienced by many LGBT people when accessing mainstream services, many LGBT people are wary or reluctant to access services today. This is despite greater legal protection from discrimination for LGBT people (Equality Act, 2010).

Anecdotal evidence from the innovation project tells us that LGBT people living with dementia face particular challenges when accessing dementia care services and housing providers. These challenges include, but are not limited to; organisations are often heteronormative and cis-orientated, there are often issues arising around next of kin (even for married same sex couples) and other supporters being excluded from care decisions, and a return to being secretive about sexual and gender identity for fear of discrimination from care and housing providers. Trans people living with dementia in particular may not remember they have transitioned, or are wrongly gendered by care and housing providers.

We will be holding a series of focus groups with LGBT people living with dementia and those supporting them to record the challenges and experiences they have faced. These will form case studies which can then be incorporated in to training resources that will be delivered to dementia care and housing providers, providing information and support so that they are better able to provide effective services to LGBT people. We will also provide support and guidance to a broad range of organisations working in the care and housing sectors to ensure they are confident to deliver on the needs of LGBT people living with dementia.

At every stage of the programme we will work with LGBT people living with dementia and those supporting them to ensure their voices and experiences are heard and valued in the development of provision, empowering them to access the services they need when they need them.