People affected by dementia, national and local organisations and LGBT+ communities have been innovating with Alzheimer’s Society to help Bring Dementia Out – an innovation that aims to help LGBT+ people affected by dementia get better access to support and information in Brighton and Hove and Greater Manchester.
The charity has partnered with people affected by dementia, LGBT+ communities and key organisations (including Switchboard in Brighton and Hove, LGBT Foundation in Manchester, the National Dementia Action Alliance and the National LGBT Partnership) on a series of resources, including a video, booklet, online hub and posters, to raise awareness and understanding of challenges faced by LGBT+ people affected by dementia. This is being tested out in the two locations over January and February this year.
Chris who is living with dementia, lives with her partner Heather in Eastbourne, and often come to visit Brighton. She said: “Often LGBT+ people feel isolated in their world from families, friends and work places, especially if those people do not know of a person’s sexuality or gender identity. It is often easier to try to live a life and not identify as being LGBT+. If an LGBT+ person gets a diagnosis of dementia this is life-changing in itself, couple that with being ‘in the closet’ about your sexuality or gender identity is even more devastating.
“The Bring Dementia Out innovation goes a long way to ensure that LGBT+ people can speak in a safe environment and get the support they need without any fear of being discriminated against. This is vital to avoid further discrimination and provide support for LGBT+ people affected by dementia. It is even more important for LGBT+ people receiving a dementia diagnosis who do not have the support of a partner or family.”
Patrick, who is living with early-onset dementia at age 35 lives in Manchester, said: “When I was diagnosed I felt alone and I did not know where to turn. Services didn’t suit a young gay man with dementia. I didn’t, and still don’t, have a partner to help support me. The concept of family can really differ for LGBT+ communities. People like me have no long-term partner or family close by to support them, and we rely on our network of friends.
“I feel excited about Bring Dementia Out and that it will be the new path that sets the wheel of change and brings out so much more than it was meant to do in other avenues of care and services. I believe it will bring about a closeness that we have longed for. And acceptance. I believe it will spark the unity among our community first, and acceptance from the other communities we feel that don’t understand us. But I also believe that the ripples of this innovation will only cause waves of positive change in other areas we didn’t think or expect would take place.”
Colin Capper, Head of Research Development and Evaluation at Alzheimer’s Society, said:
“Bring Dementia Out recognises that while everyone’s experience of dementia is unique, there can be many challenges that are specific to a person’s sexual orientation or gender identity.
“We are calling on individuals, organisations and social care professionals to visit the online hub – alzheimers.org.uk/bringdementiaout – to learn about these challenges and take action to ultimately help people affected by dementia from LGBT+ communities feel safer, listened-to and understood.
“LGBT+ people affected by dementia have told us they feel there currently isn’t a safe and secure ‘go-to’ place for support and that they don’t feel connected, and that services are not geared towards them.
“We wouldn’t be at this stage of testing Bring Dementia Out without everyone who has innovated with us, including people affected by dementia, national and local organisations and LGBT+ communities.”
In addition to the video on the online hub, the Bring Dementia booklet, which can be ordered through the hub, details some of the additional challenges LGBT+ people affected by dementia may face:
- LGBT+ people with dementia may start to have strong memories of distressing experiences from an earlier part of their lives, when they may have faced discrimination or stigma. This can be particularly troubling for trans people who may start to have much stronger memories of a time before they changed their gender, and may think they are living in this time. This can make day-to-day things like going to the toilet or getting dressed confusing and difficult.
- LGBT+ people affected by dementia may also fear discrimination from health and social care professionals, and so might not feel able to be open about their sexual orientation or gender identity when accessing services. This may be more pronounced if the person is part of a community that is less accepting of LGBT+ people – for example if they have migrated from a country where it is illegal to be LGBT+.
- Some LGBT+ people affected by dementia feel isolated, especially if they may have no long-term partner or family to support them. Their ‘chosen family’ may consist of close friends rather than traditional family relations and these people are often not included in conversations about their care and support.
Sarah Tilsed, Campaigns and Partnership Manager from the National Dementia Action Alliance, said: “The National Dementia Action Alliance (NDAA) have been working to support people affected by dementia from LGBT+ communities as part of our From Seldom Heard to Seen and Heard campaign.
“The NDAA are proud to be part of the Bring Dementia Out innovation and we’re confident that the resources produced, including the booklet and poster, will help LGBT+ organisations and communities to increase their awareness and understanding of dementia. This will alert people to the fact LGBT+ people affected by dementia can have needs that may be different and specific to them and in turn these lessons can be applied to others from different communities living with dementia. Collaboration is a core value of the NDAA so we are always striving to work in in partnership with other organisations to ensure groups like LGBT+ people affected by dementia are fully supported and their voices are heard.”
Daniel Cheesman, CEO at Switchboard in Brighton and Hove, said: “Switchboard is proud to be supporting the Bring Dementia Out innovation as we are only too aware that dementia doesn’t discriminate. Our Rainbow Café in Brighton has been running now for over 12 months and we are in regular contact with LGBT+ people affected by dementia. It is great that Brighton and Hove has been chosen to be an area where we are testing this innovation to raise awareness of dementia within LGBT+ communities. We are pleased to be working in partnership with Alzheimer’s Society, the National Dementia Action Alliance and the LGBT Foundation, and together we will #BringDementiaOut.”
Paul Martin OBE, Chief Executive, LGBT Foundation, said: “We know that many LGBT+ people today still face stigma and discrimination. For LGBT+ people affected by dementia this can be incredibly isolating, especially if you don’t feel comfortable accessing the kind of information and support you need. Many people find it is difficult to be accepted for who you are, and it can be confusing and frightening when you can’t even accept yourself. That’s why Bring Dementia Out is so important.
“We are honoured to be working in partnership with Alzheimer’s Society and the National Dementia Alliance on this innovation to begin to raise awareness of how dementia affects LGBT+ people. We are also delighted that Greater Manchester has been chosen as a testing area to ensure that amongst our own communities, we can begin to better understand the needs of LGBT+ people affected by dementia.
“Working alongside our colleagues at Brighton and Hove Switchboard, LGBT Foundation can start to look at how we can ensure that we are meeting the needs of LGBT+ people affected by dementia by improving the support available to them in our localities. It’s time for all of us to #BringDementiaOut.”
The Bring Dementia Out innovation is being tested in Brighton and Hove and in Greater Manchester until the end of February.
Visit alzheimers.org.uk/bringdementiaout to find out more about how you can help LGBT+ people affected by dementia.