Living with young-onset Alzheimer’s disease is a journey few expect to take, and even fewer feel prepared for. But for Ronnie Dean, who was diagnosed at the age of 49, that journey has become one of resilience, advocacy and unexpected new purpose.
Here, she speaks candidly about the early signs she noticed, the traumatic experienced she endured when being diagnosed, and the impact it had on her family, including how her son and daughter reshaped their own lives in response. She also shares the turning points that helped her rebuild her confidence, from finding the right healthcare support to discovering a passion for educating others and driving change.
Ronnie will speak about her Alzheimer’s journey during the ‘Dementia Question Time’ session at Care and Dementia on March 25.
Could you tell me about your work and family life prior to your diagnosis?
I worked for North Wales Police for just under 25 years and I finished as Head of Freedom of Information. I’m married to Anthony – we’ve just celebrated our 30th wedding anniversary – and we have two children – Lizzie, who is 29 and Will, who is 26.
When did your symptoms start to occur, and how would you describe them?
I started to notice symptoms about three years before I was diagnosed. I used to drive all over the country in an unmarked police car without a Sat Nav and it wasn’t a problem. But suddenly, I started to notice that I was forgetting the routes. On one occasion, I was heading home from Lancashire and ended up in the middle of Liverpool.
My words also became simpler, and I forgot how to use PowerPoint for meetings. I had a big team, and I suddenly couldn’t remember all of their names. At home, I couldn’t use the microwave and almost set the kitchen on fire by putting the electric kettle on the gas hob.
My dementia has also led to muscle weakness in my legs, so it’s affected my mobility.
Could you talk me through what your dementia diagnosis was like for you?
I visited my GP and it took me three years to get referred. He kept insisting that I had depression, but I knew it wasn’t because I experienced depression when my daughter was born and it didn’t feel like that.
Once I finally got referred, it was a further 12 months before I got diagnosed. My consultant was off sick, so it was a locum doctor who diagnosed me. It was a 10-minute appointment, and she basically said I had two years before I’d be in a nursing home and that would be it. She didn’t ask me any questions, she just sent me away with a grey carrier bag full of leaflets – that was my care package.
I then had an appointment with another locum consultant who knew very little about young-onset dementia. He kept asking me questions like ‘when did the war start?’ and I’d reply with ‘which war? The Falklands? The Gulf?’ I complained about him and he was put on a refresher course and eventually dismissed from his job.
After that, we went private and my consultant, Professor Elliot in Shrewsbury, was amazing.
How did you feel when you were first diagnosed, and how did your family take the news?
I went back to my office, locked the door and I just swung around in my chair and cried my eyes out. It was just before Christmas in 2016 and my son and husband were away skiing, so Lizzie was the first person I told.
My children were just 16 and 19 when I shared the news with them. My daughter had finished her A Levels and the first thing she said to me was ‘I’m going to look after you’. The thought of that horrified me because I felt like I was ruining her life, but it’s what she wanted to do. She’s now my carer and supports me with everything.
Will, who has autism, was about to leave home and move to Shrewsbury to open a shop. After my diagnosis he said, ‘I can stay at home, or go and make you proud’, so that’s what he did. Since then, he’s become a sports fanatic and done all these crazy things for dementia charities, like running seven marathons in seven days. During COVID, he climbed the height of Everest on his stairs. At first, I think he did these challenges as a way of coping, but now he does them because he genuinely loves them. And that’s down to the support of Lorenzo’s House in Chicago.
At the time of my diagnosis, there was no organisation that supported children of people living with young-onset dementia in the UK, but we discovered Lorenzo’s House, and they’ve helped him so much. Will travelled over there to visit Diana Cose, who started it, and we’re now really good friends.
Will’s now at Trinity College studying a Master’s in dementia.
I suppose you could say that your diagnosis has opened doors for Will…
Yes. At the time of my diagnosis, he’d finished school and got his GCSEs, but he didn’t want to go to university – that was a word you didn’t speak about. So, for him to end up at university and loving it, is amazing.
What were the key drivers that helped you come to terms with your diagnosis?
After my diagnosis, I Googled ‘dementia’ and ‘Dementia UK Admiral Nurses’ appeared at the top of the search list. So, I waited until everyone was out of the house and I called them. It was a long phone call with lots of tears, but they were brilliant. Through my whole experience, not one medical person apart from my private consultant had been positive about my diagnosis, but these nurses were positive and they gave me a glimmer of hope, and that just grew and grew.
My CPN [Community Psychiatric Nurse] has also been brilliant, and she encouraged me to go to a dementia conference in London. That’s where I met Dr Catrin Hedd Jones from Bangor University. She runs the Caban Group, which is made up of people living with Alzheimer’s who educate doctors, nurses and social workers on what is important to people living with dementia and how best to support them. Catrin introduced me to the group, and I started going to regular meetings. Later, I was asked to talk with student nurses about my experience, and my advocacy work grew from there.
Another thing that helped me was working with Alzheimer’s Research UK [ARUK]. For four years after my diagnosis, I didn’t tell anyone about my dementia apart from close family. This stemmed from my experience at a church I used to attend – if they knew you had dementia they wouldn’t put you on the tea rota, so you weren’t even allowed to make someone a cup of tea. Or they’d put you in a pew with a book and leave you. The thought of that horrified me. The church I’m with now treat me as part of the family and the diagnosis doesn’t matter to them.
Anyway, Will was taking part in the Jurassic Coast ultramarathon challenge in 2019 to raise funds for ARUK and was filming a documentary about it. ARUK said it would be so much better if I was included in the filming and that’s when I said, ‘okay, that’s enough time’ and I haven’t stopped shouting about my diagnosis since!
If you could go back and speak to the medical professionals who treated you so badly, what would you say to them?
When I give talks to medical students, I always tell them that diagnosing someone with dementia isn’t just about explaining what’s wrong - you’re also mapping out how that person will experience the next six to twelve months as they come to terms with the diagnosis.
For six months after my diagnosis, I felt suicidal – my job had finished and I thought I had two years to live. So, I say to my students that a dementia diagnosis isn’t good news, but they can tell their patients that although their life is going to change, they can still have a life. Right now, I live my best life.
You’ve dedicated a lot of time and energy to dementia advocacy work. What other projects are you currently working on to raise awareness?
I recently worked with Welsh Ambulance Services to redesign the inside of an ambulance to make it more dementia‑friendly. Non‑urgent patients can spend over 14 hours inside an ambulance, which can cause anxiety for people with dementia. The new design uses softer lighting and calming colours. Although I’ve only been in an ambulance because of respiratory failure, not dementia, the bright white ceiling has caused me to hallucinate, so we changed it to a blue sky with clouds. We also added a door design featuring a bluebell garden to help prevent people with late‑stage dementia from trying to leave.
I’ve also worked with Passenger Assistance UK to promote their app. I’m not very good with technology, but they have a really easy app that enables me to use public transport on my own.
I’m on a steering group in Flintshire to support the council’s dementia-friendly strategy, and I work with Denbighshire County Council, giving talks to sixth form students looking to work with elderly people.
Do you think that sharing your experiences and educating others has helped you to live well with dementia?
Definitely. At my last assessment, my consultant told me she believed that without all my advocacy work, my dementia may have progressed much further by now. I grew up in a rural farming village and, back then, elderly people, with or without dementia, would just sit in their sitting room all day with no stimulation. So, I keep busy and I also keep days in the month free to catch up with friends over lunch.
What advice would you give to someone who is newly diagnosed with young onset dementia?
The first thing I would say is ‘if you think you have dementia and your doctors are fobbing you off, don’t let them, stand your ground’. If you have that feeling, trust your gut and keep pushing.
Also, I would say that dementia is not a nice diagnosis, but it doesn’t mean your life is over. Some people are able to carry on working, or you can start volunteering. You can still have a life, and I live my best life every day. My aim is to make memories for my children, and I have so much fun making them. Last year I went axe throwing and soon I’m going to drive a tractor. I’m doing things now that I’ve never done before - I never thought I could speak in front of a thousand people, for instance!
I was in my 40s when I was diagnosed by a locum who said I had two years to live. After two years, I thought everything else was a bonus. Do you know what? I’m going to be 60 next year.