Challenging dementia stigma is one of ADI’s core missions, and one where there is unfortunately still a long way to go. ADI’s global survey on attitudes to dementia in 2024 revealed that a worrying 80% of the general public still thinks that dementia is a normal part of ageing, amid persistent stereotypes on who can develop the condition.
These beliefs not only impact people living with dementia’s access to diagnosis, treatment, and care, but also worsen discrimination against people who fall outside of the expected demographics for people living with dementia.
In this essay, which features in the World Alzheimer Report 2024: Global changes in attitudes to dementia, Patrick Kitana Ettenes, a lived experience advisor and the co-founder of Bring Dementia Out, speaks about their experience as a non-binary trans person with early-onset dementia. We hope their story will serve as an important and compelling testimony of the specificities of LGBTQI+ experiences of dementia, encouraging us all to advocate for more inclusion, empathy, and support for all.
My name is Patrick Kitana Italo Ettenes and I am 41 years old. I was born in Barbados, my mother is from Trinidad of East Indian descent, while my father is Dutch of Swiss descent. I also have a brother, who’s older, odd, and complicated – but then he could definitely say the same about me. I currently reside in Manchester, in the United Kingdom. I identify as trans and non-binary, I use both he and she pronouns, and I have early-onset dementia.
Being diagnosed with dementia in your early thirties
My story began a decade ago. I was in an abusive relationship, which resulted in me having a nervous breakdown and some form of stroke. I went to sleep and woke up basically paraplegic, and as a result I had to learn to walk, talk, and write again.
I knew something more was wrong with my brain when I started to hear voices. I started experiencing short-term memory loss, but most upsettingly, I was not able to remember my childhood. I had no emotional memory whatsoever. The last straw came when I took over an hour to put pages 1 to 5 of a printed document in order.
The doctor who told me I had frontal lobe atrophy never explained to me that my condition was a form of dementia, just that I had more brain wastage than anyone they have ever seen, and that my brain was 20 years older than it should be.
Google became my best friend, and I realised that early-onset frontotemporal lobar degeneration (FTLD) was a rare form of dementia (please note that I took this as a compliment). I stumbled across a thesis that touched on the theory that Frontal Lobe Atrophy can be caused by high amounts of trauma to the brain. Well, my former partner did a number on my brain, that’s for sure.
When I was eventually diagnosed with dementia in my early thirties, it was the support worker from the Alzheimer’s Society, not the clinical psychologist I had an appointment with, who explained to me that I had early onset. That same psychologist later denied that we had had that conversation – despite the support worker having been there – and never let me address the abuse my ex-partner put me through. Do you know what it’s like to have PTSD, with past memories of abuse coming forward, and as you sit in the room with someone who’s meant to help you, they try to change the topic?
Little did I know I was facing another form of abuse. I remember going to the leading neurologist in Manchester, to whom I told all the struggles I was facing. I even had printed out the results of my own research to show him.
He took one look at the paper, threw it to the side, and said to me that I couldn’t have dementia because of how I was dressed and how articulate I was. He even added: “I bet you anything you just don’t have it.”
I finally snapped. “Listen here, I am a gay man who has always been fashionable and colour-coordinated – since when does wearing Zara head to toe mean anything about not having dementia?”
The process to get my diagnosis has been one of the most shameful experiences I’ve ever had with the NHS. What happened to me has left other healthcare professionals upset and baffled as to why and how these people could still be out there helping others.
At the time of my diagnosis, very little was known about FTLD. After a few years, I heard about a support group for people living with FTLD. As you can imagine, I was so excited to attend. Little did I know that it would be so comforting, reassuring, emotional, and extremely triggering all at once.
I broke into tears when I heard stories from others with my condition, which confirmed what I had tried to explain to the know-it-all neurologist. I was so relieved, but at the same time it triggered pain and hardship that someone of my age had to face this.
Because I was in my early thirties, people knew I had the condition but didn’t empathise with me when I had to explain that I couldn’t do certain things, hold down a full-time job, or why I wasn’t the same person anymore. Everyone just thought I was exaggerating or making excuses.
My father, who passed away in June 2024, also had dementia. About a year ago, I was in Spain with him and my mother, who used to be an NHS nurse for over 30 years, when she sat me down to say: “For the first time, I can see that your dementia is affecting you.” I could feel the pain it caused her to say this, but she could see the similarities between my father and myself.
“Like father, like son,” as my father would say.
Advocating for dementia in the LGBTQ+ community
There were also misunderstandings with other people living with dementia. I attended a conference with a fellow dementia activist who had written a book that got a lot of praise for having a very positive outlook on dementia.
When I was asked to speak, I explained the struggles I had to face as a single LGBTQ+ person living alone with the condition, and how I suffered with the condition. She got so upset that I said that I suffer with dementia, telling me that she was trying to educate people into using correct phrases so they wouldn’t fear the condition.
I had to kindly explain to her that I do suffer with my condition. I had no career, I was still trying to learn how to manage myself, it was hell on earth for me. Not remembering my childhood, not been able to carry on with basic organising and functioning made my life as a single person even more isolating.
When you face others with the condition, you realise that you are facing another person’s reality that is perhaps different than your own, and that’s okay. This is when I learned that my voice and my situation were unique, and they needed to be shared.
When I was diagnosed with this condition, my mentor looked at me one day and said: “Only you have the gift to turn your issues into a way to help other people. I don’t know how you will do it, but only you can.”
And he was right. I took those words and started to build a new road from scratch. I was an amazing writer, but I now needed to be seen and heard. With great effort, my mentor taught me public speaking. I guess he knew I had a gift that needed to be nurtured, and I’m so grateful he did.
In all honesty, it has taken 10 years or so to finally have friends who understand my situation as best as they can, who adapt and care for me on so many levels when I’m around them. I am grateful for them every day. After a couple years of friendship, I turned to a friend and asked if she would be my carer. It’s not every day you ask that of someone, but it came to that point. So now I don’t feel alone, and I have to remind myself of that.
However, the sheer loneliness and lack of empathy from others in the LGBTQ+ community has sometimes been phenomenal. Many gay men don’t like to think about getting older, so anything that shows the harsh possibility that they could get dementia gets thrown to the side because it is too frightening.
I have learned that a lot of single people do not receive treatment or access care – simply because they are ignored. My life with this condition has caused me to be suicidal and self-destructive for days, weeks, months on end – all because I was alone. I craved my family more than I craved drugs. I wanted to be loved, but who wants to date someone who already has dementia?
This is why I set up Bring Dementia Out back in 2018, the world’s first LGBTQ+ support group for people living with dementia. My work is now to ensure that LGBTQ+ people and people of colour are included in dementia work at the local and international levels.
The more I fell out of love with my community, the more I wanted to help it. It’s an odd statement, so I’ll explain. The way I was treated by so many in the LGBTQ+ community, one wouldn’t be able to recover from that anytime soon – but that made me work more, because one day, one of them will develop my condition, and they will need the services I am trying to develop. I know in my heart that a lot of them would struggle much more than I did, and I just don’t want them to suffer that much.
My illness made me see the world differently. I have the unique perspective of having an older person’s condition at a very young age. Those circumstances have made me empathise more with individuals that I never would have thought about. Because of this, I realised that there are so many people from different religious backgrounds and ethnic minorities that have also been overlooked.
I am facing the fears and struggle of my future living with dementia and worrying about what services and care I would receive in the foreseeable future. It’s so important that people from my community feel accepted, because you have no idea the struggles we face day in and day out trying to be accepted within our own minds, within our families, our environment, and at work. Then comes a time when we are sick, and it’s another battle we face, alone, because the world still sees us as taboo.
I’ve not had the chance to develop long-time connections and romantic partnerships like my heterosexual counterparts. I am so frightened of the shame and prejudice that could befall me in a care home, because I want to wear my heels around all day when I am perceived as a man. Will my care staff, nurses, and residence understand why that pair of heels mean so much to me?
Person-centred care is about understanding this one golden rule: you were born into the norm, I wasn’t, and I was told every day that I was different. As a result, I may have different coping mechanisms, social structures, stories, or habits. Nevertheless, just be open to how they lived their life.
The work I am doing is vital, because voices that are brave and open and honest about their experiences are rare. I don’t believe I was punished by having this condition. I believe it was a gift, a painful one, but I believe the universe wanted me to do something with this condition: to educate as many people as possible and open their eyes hearts and minds to the needs and requirements of my community, so that another generation of LGBTQ+ people with dementia doesn’t have to feel alone or abandoned.
As my condition progresses, I’ve now found myself identifying more and more as transgender, and I see the world through another lens. As a 41-year-old person who has lived their life as a gay man, as a result of my dementia I have unshackled the restraints I had in place around my feminine side and embraced a new era in my life where the divine feminine in me shapes the very essence of my work.
As I find myself more and more, I see where others trans and non-binary people need change and acceptance today. As I become whatever I am meant to be, I continue to shape this broken world into a richer and more caring one, so no one has to feel scared that they wouldn’t be cared for properly if they are diagnosed with dementia. A world where trans women can embrace a future in which, if they were to be diagnosed with dementia, they can choose a care home and carer without worry, instead of ignoring the future like I did. A world where they can be themselves no matter where they are.
When I started to see the effects of my work and how it has impacted others, that fuelled me more. A friend was a student of mine at the University of Manchester, where I was a guest lecturer. To this day, she says this lecture changed her career path to become a ward manager in a dementia care unit. That student is one of my best friends now, and a major support in both my personal and professional life.
I’ve been humbled by the feedback of people who have heard me speak, to know that my experiences in life haven’t been in vain, even as I sit here distraught by the passing of my father, crumbling in ways I can’t express. It does something to you when you watch your father pass of the same condition as yourself.
Writing this article wasn’t easy, I haven’t been in a good place since my father’s passing, but it has given me perspective, and I believe it will do the same for others. I just want to leave a legacy behind so the day I finally close my eyes, I know I’ve done right by the world, for others – until they find the few thousand skeletons in my closet (a little bit of humour to break the ice).
Take these last words from me please. In any given moment, a memory can stay forever or fade away. Wouldn’t it be amazing you were part of someone’s forever memory? That you made them smile, feel safe, and maybe even loved?
Try to be someone’s forever moment, because I’ll need you one day to remind me.
This essay, alongside many others can be found in our previous report:
World Alzheimer Report 2024: Global changes in attitudes to dementia,
This year, the World Alzheimer Report 2025 will be launched on 18 September.