The gay man with early onset dementia who’s improving the care system for LGBTQ people

Interview: Thomas Stitchbury; pictures: Markus Bidaux

The Attitude Pride Awards, supported by Clifford Chance, are part of Attitude Pride at Home, in association with Klarna.

“I don’t know anything else but to fight,” begins Patrick Ettenes, who has more than earned his battle stripes after wrestling with an HIV diagnosis, substance abuse, and becoming one of the youngest people in the country to be diagnosed with early-onset dementia, at the age of just 31.

“I’m currently the youngest person in the UK with my form of dementia, which is frontal lobe atrophy,” he clarifies.

“I’ve outlived my expectancy”

The first signs emerged when Patrick had a nervous breakdown as a result of an abusive relationship; he became agoraphobic; couldn’t complete simple tasks, such as putting the numbers one to five in the correct order; and he started to forget members of his family. “I introduced myself to my cousins as if I’d met them for the first time,” he reveals.

“The diagnosis was hard, having to ponder what my life would be like in the future,” he says. “When I found out I had the condition, yeah, I kind of fell apart, but I’ve outlived my expectancy and I’m sort of a walking miracle to them [doctors].”

Born in Barbados — where his mother and father, who also has dementia, live — but based in Manchester, Patrick, now 38, has learned to adapt to life within the parameters of the disease. “Each morning I have to wake up and put the bricks back up on the wall,” he muses. “Every year, a bit more slips.

“For instance, I can go to London for work and get on a train and come back home, but one day I pushed myself too much and I blacked out.

“I was in Euston station; I blinked, and I had no idea how I got there, no memory of why I was there. I had my suitcases, and it took me five minutes of trying not to scream, before I realised that I was going to Manchester.”

“I feel the absence of love in my life”

Part of the sexual health team at the LGBT Foundation — he describes his colleagues as his “chosen family” — Patrick opens up about his struggles with loneliness: “It’s not something that anyone signed up to, so I’ve had partners break up with me because of my condition. They don’t seem to understand that sometimes I need that extra bit of care or support.”

 

He adds that lockdown hit him particularly hard: “I literally said to my mother, ‘Either I go home to Barbados [to see you] or you’re [arranging a] funeral — which do you want, a son or a funeral?’ When I went home, the first time I got a hug in almost 11 months was from my best friend… I said to my mother, ‘I feel the absence of love in my life.’”

Patrick — who also guest-lectures at universities — keenly felt that same isolation when he found that there was no targeted support for him as a young, gay, single man. “I went to some support groups, but they weren’t designed for me. I actually left in a worse state,” he recalls. “They were in their 50s and 60s and they had wives of 25 years and their children supported them. I had nothing in common with those people besides the condition itself.”

Spurred into action, he set up the volunteer-led LGBT Dementia Network and, later, co-founded Bring Dementia Out — in collaboration with the Alzheimer’s Society — to improve services to LGBTQ+ people in the care system and housing associations.

“Our walks of life are completely different to the heterosexual norm, and we just trained them in that,” Patrick explains. “Gay men of a certain age [for example] would most likely revert to a period of time where being gay was illegal… and a lot of them go into care homes, but they won’t admit their sexuality because they’re afraid of the prejudice they will go through.”

“Even with the trans community”, he continues. “I’m part of the ethics group of Alzheimer Europe and there was a lady who got diagnosed with dementia, so she went to a care home to find out what care she could receive in the future. She never transitioned, so she still has to shave and put on her makeup, and they said, ‘We won’t do it, we don’t have time for that.’

That same day she went to a euthanasia clinic… it was easier for her to end her life on her terms than live as a man.

“In England, we had a trans woman who went into a care home, and she was ‘re-transitioned’ as a male due to her family, and the care home went along with it…. That person was distraught, and these things still take place; that happened three years ago.”

“I try to appreciate the little moments I have of peace.”

Determined to create a safe space for the LGBTQ+ community when they need it the most, a teary-eyed Patrick maintains that his work has been his biggest coping mechanism. “The work that I’ve done is what has really given me a purpose. I feel like it’s not in vain, going through so much hell,” he shares.

“One of you will get dementia, and one of you will walk into my establishment or walk into a housing association that was trained by myself and that is such an honour.”

As our conversation draws to a close, Patrick concludes with his thoughts on what dementia has taught him.

“You take things for granted until they’re gone,” he says. “When I went home to Barbados, I sat outside with my bestie; he is my gay mum, he brought me up since I was about 16 years old. We just sat there and talked and laughed.

“I try to appreciate the little moments I have of peace.”

Read more about this year’s Pride Award recipients in the Attitude Summer issue, out now.

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