Alzheimers Society: LGBTQ+ Sufferers In Sussex Need More Support

An Eastbourne woman says she faces being ‘double stigmatised’ and is backing calls from Alzheimer’s Society for better support for LGBTQ+ people living with dementia.

Brighton and Hove's Pride event starts this Friday, which seems an opportune time for the Alzheimer’s Society to shine a light on people in the LGBTQ+ community who need to be bale to access safe and inclusive support that feels relevant to them.

Chris Maddocks, a former police officer from Eastbourne, was diagnosed with dementia in 2016 at the age of 60 and is also part of the LGBTQ+ community. 

She said:

“When you have a dementia diagnosis, that is a stigma. But being part of the LGBTQ+ community is another stigma, so you are almost double stigmatised. 

“I live with my partner so am luckier than some, but many LGBTQ+ people with dementia do not have partners and have not always got great family support.”

Chris was part of Alzheimer’s Society’s campaign called Bring Dementia Out. Sharing the fears and challenges both herself and others living with dementia from the LGBTQ+ community can face,  she said:

“I spoke with a transgender man who needs to take hormone tablets each day but is extremely worried about getting to a point in the near future when he won’t remember his medication.

“I have gone for medical appointments and professionals mentioned my friend with me, when it was my partner. When I called my GP surgery recently on behalf of my partner, they asked for HIS name, when all they needed to do was ask what my partner’s name is. 

“There are so many wrong assumptions made that cause difficulty and pain, but it only requires small changes to make a large and positive difference to those identifying as LGBTQ+.

“A lot of people in the older generation will have grown up during a time when homosexuality was illegal. Due to dementia, they can regress to a time years earlier and start going back to a place in their mind when they were criminalised and outcast, causing strong symptoms of anxiety and fright. 

“It is so important to see the person first and not their sexuality or dementia.”

There are more than 26,500 people estimated to be living with dementia across Sussex. To better support people with the condition from the LGBTQ+ community, Alzheimer’s Society is calling for:

• Support services to be LGBTQ+ inclusive and to recognise how important gender identity and sexuality is to LGBTQ+ people with dementia.
• For more dedicated LGBTQ+ services to be available for those who wish to use them. 
• Everyone affected by dementia, regardless of gender or sexuality, to receive the information, advice and support that feels safe and relevant to them.
• Improved training for healthcare professionals, including in residential homes, on the individual needs and unique challenges that LGBTQ+ people with dementia may face.

John Hammond is a volunteer for Alzheimer’s Society in Brighton.

He said: 

“If you are the only LGBTQ+ person going along to a dementia service and others are talking about their partners of the opposite sex and children, it can be tricky to feel included. 

“Our aim is to turn thoughts into tangible actions, setting up LGBTQ+ dementia peer support groups in Sussex, where people can talk without fear of censorship or worry.” 

Dara de Burca, Director of Operations at Alzheimer’s Society, said: 

“People living with dementia can experience a broad range of challenges, from relationship struggles to problems with day-to-day tasks. But being LGBTQ+ with dementia can present additional obstacles. It is crucial that everyone affected by dementia gets support that meets their individual needs, regardless of their gender identity or sexuality. 

“Whether it’s help accessing services, emotional support, knowing your rights or support with planning ahead, Alzheimer’s Society is here to ensure that nobody affected by dementia has to face it alone.”

To speak to an Alzheimer’s Society dementia adviser who can provide information and support to help you understand your diagnosis, plan for the future and signpost any local services that might be of interest, call the charity’s Dementia Connect support line on 0333 150 3456. 

You can also download information created specifically for LGBTQ+ people with dementia and their carers via alzheimers.org.uk 

Other support includes:

• Look for services and care settings that are LGBTQ+ aware. They may have a kitemark or a sign (usually the rainbow flag) that shows this.
• Consortium has a directory, which includes LGBTQ+ services and support groups for older people. You may also want to contact a local LGBTQ+ organisation in your area, who may know about any groups or services that are available locally for LGBTQ+ people with dementia