Improving dementia support for LGBTQ+ people

When my mum was diagnosed with Alzheimer’s, I was completely lost. I was given a leaflet and the consultant said, ‘Read this, it will tell you everything you need to know.’ But it didn’t.

Before her diagnosis, I had no understanding or appreciation of dementia. As became apparent, dementia is complex and it affected Mum in many ways.

I contacted Alzheimer’s Society. They helped me throughout. An incredible dementia support worker provided a listening ear about my mum’s rapid change in her condition. I could keep checking in with them to ask questions about Mum’s symptoms. This was very reassuring.

I wanted to give something back, desperately, as soon as I was able to, and I’ve been volunteering with the Society for around five years.

I believe wholeheartedly in its approach and wanted to be a part of that.

I’ve helped to co-facilitate carer support sessions and peer support groups. I’m also involved with the Research Network and Volunteer Advisory Panel. Most recently I’ve been working with Alzheimer’s Society in thinking how the LGBTQ+ area of its online community, Talking Point, can be more engaging.

Specific LGBT support

I’m also Operations and Development Manager at Brighton & Hove LGBT Switchboard, and we saw the need for support that’s specific to LGBTQ+ (lesbian, gay, bisexual, trans and queer) people affected by dementia.

Our Rainbow Café, born from our older person’s project, provides an opportunity for LGBTQ+ people who are affected by dementia to support each other.

Some people have had very negative experiences of services. Many have lived through times when their identities will have been criminalised or pathologised.

LGTBQ+ people disproportionately live alone and are disproportionately affected by social isolation, mental health conditions and alcohol use – all risk factors for dementia. 

I find that many of our Rainbow Café members have a family of choice rather than a family of origin.

Your entire self

The Rainbow Café is a safe, affirming space for LGBTQ+ people to come together. It’s very welcoming, and there’s no need to keep coming out. You can be free, be your entire self in a support service.

Dementia is tough, but there’s a certain amount of celebration at our social meetings – celebrating people’s life stories.

At Switchboard, we pride ourselves on working with Alzheimer’s Society and many other organisations. We provide training and awareness, we’re partnering with researchers and we’re currently extending the Rainbow Café into West Sussex as well. It’s an expanding project – it’s exciting!