Bring Dementia Out: A Programme to address the needs of LGBT people living with dementia (and those supporting them)

Evidence suggests that there are 850,000 people currently living with dementia in the UK, and this is set to almost double to 1.6 million 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. A government estimate states that 5 – 7% of the UK population are LGB (Dept. of Trade and Industry ‘Final Regulatory Impact Assessment: Civil Partnership Act’ 2004) and a further 1% of the UK population are trans and gender variant (GIRES, The Number of Gender Variant People in the UK (opens new window), 2011). Based on these figures, there could be as many as 68,000 LGBT people living with dementia in the UK.

To address the lack of visibility and awareness of LGBT people living within dementia care and housing services, LGBT Foundation, supported by the Guinness Partnership and in partnership with National Dementia Action Alliance, Switchboard (Brighton & Hove), National LGB&T Partnership and LGBT Consortium, are proud to announce the launch of our new programme, “Bring Dementia Out”. This partnership of LGBT organisations, dementia organisations and housing associations provides an excellent opportunity to share our respective expertise to ensure the success of the programme.

Barriers to accessing care

There is a long history of discrimination experienced by many LGBT people of all generations when accessing mainstream services, which has led to a wariness and reluctance to access services today despite legal protection from discrimination for LGBT (Equality Act, 2010). With this historical discrimination in mind, it is not surprising that many LGBT people have a fear or distrust of mainstream services. Anecdotal evidence from the “Bring Dementia Out” innovation project tells us that dementia care services and housing providers are often heteronormative in nature. Issues arising around next of kin (even for married same sex couples), a return to being secretive about sexual and gender identity for fear of discrimination, and not being supported to be themselves (particularly for trans people living with dementia, who may not always remember they have transitioned or who are wrongly gendered in a care home environment by care providers) were just some of the concerns raised. Making efforts to include LGBT literature and signposting within these services to demonstrate that your organisation is LGBT aware and affirmative can make a huge difference in the confidence LGBT people have when accessing these services.

Innovation

This exciting new programme was initially developed as an innovation project led by Alzheimers Society. This next evolution of the programme will see learning from the innovation project rolled out across England through developing initiatives including training for dementia, housing and care organisations on how to ensure inclusivity for LGBT service users. We will develop an e-learning course for those working in the fields of dementia, housing and care to ensure access is available to everyone who might benefit from the learning. Through building relationships with the dementia, housing and care sectors, we aim to ensure the voices of LGBT people living with dementia and those supporting them are heard and valued.

LGBGT Foundation and our partners want to ensure the visibility of LGBT people living with dementia at every stage of their care. We will be creating a series of resources, including posters and information leaflets, for display within the premises of housing providers, care and support services. Through these resources, we will encourage a more inclusive environment where LGBT people know they are welcome and safe to be who they are.

"We aim to ensure the voices of LGBT people living with dementia and those supporting them are heard and valued"

Improving Services

The “Bring Dementia Out” partners want to ensure the lived experiences of LGBT people living with dementia are central to our programme. These real experiences can be a catalyst for improving the support and outcomes for those affected by dementia. Throughout 2020, we will be holding a series of focus groups to ensure LGBT people’s voices shape the development of training and resources. We will collect case studies that offer examples of the specific challenges faced by LGBT people living with dementia. We want to empower LGBT people, giving them the confidence to be heard, and ensuring that their lives and experiences are understood and respected by those working in the housing and care sectors.

In the initial stages of the programme, we would like to hear from LGBT people living with dementia, those supporting them, as well as dementia organisations working with LGBT people. We want to know whether people feel that the services they have used meet their needs as LGBT people, and what could be improved or changed to ensure they are offered the best possible care and support.

With thanks to the Housing LIN for featuring. If you know anyone in your networks who wants to get involved in the “Bring Dementia Out” programme, please do ask them to get in touch with us at LGBT Foundation.

Our webpage for this programme is currently in development; however, you can contact Claire Days (Bring Dementia Out Programme Co-ordinator) for more information at: claire.days@lgbt.foundation

For further information about the range of health and wellbeing programmes delivered by LGBT Foundation, please visit: https://lgbt.foundation/ (opens new window)