Patrick Ettenes navigates his thirties with young-onset dementia.
A dementia diagnosis can be hard to accept at any age. But imagine being told you have dementia in your early thirties. Suddenly, typical thirty-something affairs such as clubbing with friends, travelling, dating and career advancement become more complex as uncertainty muddies the future.
So goes the story of Patrick Ettenes, a 38-year-old man living in Manchester, England. In 2015, Ettenes suffered a nervous breakdown and a stroke. A subsequent brain scan exposed extensive deterioration. At just 32, Ettenes received a diagnosis of frontal lobe atrophy, a type of dementia caused by progressive nerve cell loss in the brain that can affect behaviour, personality, language and movement.
He couldn’t see it at the time, but the following years would uncover his resiliency.
The stroke had left him unable to walk, talk and write, so first he slowly built his body back to health. Then he sought ways to live well in his ever-changing world. For a while he attended dementia support groups, but found they consisted mostly of married people over 50 who were cared for by their children. As a young single gay man, he struggled to fit in.
Having lived with HIV for more than a decade while battling through drug addiction, an eating disorder and an abusive relationship, he came to realize he was adept at overcoming life’s challenges.
In 2018, Ettenes created the LGBT Dementia Network, an advocacy group dedicated to LGBTQ2+ community members living with dementia. And in 2019, he co-founded Bring Dementia Out with the Alzheimer’s Society, a program to train and assist housing and dementia organizations in addressing the community’s unique experiences.
Today, Ettenes is an award-winning activist, public speaker and writer who plans to stay busy advocating. He wants to show others that life doesn’t end with a dementia diagnosis — and that dreams can still be realized.
Here, Ettenes shares some of his struggles with dementia and reveals how he strives to make the best of every day:
“Living with dementia doesn't just mean you have a condition taking away your memories. If you're younger, I think it takes away your voice and develops a lot of insecurities. I still want to achieve, but every year my condition takes a bit more out of me.
I have fantasies in my head of things I want to achieve, so that keeps me going. I have a fantasy to go on the beach when I'm by myself for the first time and watch the sunset. I try to embrace being on my own and not see it as a weakness, but as a strength.
The journey I have to go through is not going to be easy, but if I can continue getting a bit of support from the world and from the people around me who allow me to be me, then I can bring a lot more to everyone's life.
My advice for others living with dementia is to accept that each year things will change. Get the right people around you to cry with. It's okay to get upset. If you want to scream and shout, do it.
My motto is to try to keep as much of me as possible. I’ve always been different and unique; I like to be a little bit crazy. I don’t want to lose that part of me.”
GET MORE INFORMATION
Learn about frontotemporal dementia from the Alzheimer Society of Canada.
Read more articles about lived experiences of dementia.
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