A former Police Community Support Officer (PCSO) has spoken about how volunteering for studies through Join Dementia Research has given him a sense of purpose after his Alzheimer’s disease diagnosis. 

Peter Middleton from Northamptonshire was diagnosed with early onset Alzheimer’s disease in 2018, aged 64. 

Diagnosis

Peter said: “I had been a Police Community Support Officer for 12 years. Before that I was a business consultant in IT but I got too ill from diabetes from sitting behind a desk all day and knew I had to change my lifestyle so I swapped the desk for a uniform. I started walking around the streets all day looking after vulnerable people and I thoroughly enjoyed it. 

“I began to feel as though I couldn’t do the job properly but I didn’t know why. I couldn’t put my finger on it, but I felt like one of those performers in the circus with plates on sticks, trying to keep the plates in the air, and I had the feeling I couldn’t do it any longer. I was worried I would drop one and that I was a vulnerable person. I couldn’t bear it. I had a nervous breakdown. That was the start of it. 

“I didn’t suspect dementia. I had met people with young onset dementia before, but it hadn’t occurred to me. But it turned out after two years on sick leave, I was finally diagnosed with dementia by an occupational health doctor.

“I was absolutely delighted to have my diagnosis because it was an absolute breath of fresh air to have the certainty of what my condition was. My wife and I could plan all of the things I needed to do to organise our lives.” 

Signing up to Join Dementia Research

Immediately after his diagnosis, his doctor gave him literature on useful resources on dementia such as the Join Dementia Research website.

Peter said: “I wanted to make myself useful after diagnosis and give myself back a sense of self worth, so I signed up to Join Dementia Research straight away and started receiving useful things to do.

“I wanted to take part in research because early diagnosis is everything. I don’t expect anything out of it myself. I’ve got Alzheimer’s disease, I won’t get back the brain tissue that I’ve lost, but there are drugs that will help to slow down that cognitive decline and I could have been on that 2 years earlier if I had been diagnosed when my symptoms first started. 

“Figuring out ways to diagnose the condition earlier is one of the most important things. If I can help researchers spot those signs and develop ways to diagnose people earlier, what a legacy to leave behind.

“I hope my legacy will be that I’ve played a small part to help people who are going to be diagnosed with dementia in the future to have a better time. That’s fantastic and I’m so pleased to have been a part of that.”

Taking part in research

Peter has since taken part in several studies through Join Dementia Research as he wants to use his own experience and perspectives to help researchers understand dementia better.

Peter said: “I’ve done dozens of different studies and I can’t remember all of them. I’ve done a few things to do with my eyesight and lots of different cognitive tests. I’ve done lots of questionnaires on all sorts of topics. I’ve also taken part in research on regulations to make buildings more dementia friendly.

“I’ve always been useful in my life in the workplace. When you’re diagnosed and you can no longer work, you can begin to feel worthless, but I began to realise that my diagnosis has given me worth because it’s given me a perspective on life that I didn’t have before.

“I can contribute to a research project and make sure they look at the right targets, because I’ve got that perspective now. That was given to me because of my dementia so it would be a bit selfish not to share it.”

Feeling valued

Peter said: “Sometimes I find things I can’t do anymore and I get very sad and emotional, but I’m still physically fit, there’s no physical pain in dementia. But I’m busy. I have lots of meetings because I’m taking part in research and speaking about my dementia at events. I’ve never felt as valued as I do now, so there’s highs and lows.

“I’m thoroughly enjoying my life in spite of my dementia. There’s no point in me complaining about it, it’s just one of those things, so I just get on with my life.” 

Alongside taking part in research, Peter writes a blog about living with dementia. 

Join Dementia Research is a free, national service that enables you to register your interest and be matched with suitable research studies.

If you are inspired by Peter’s story, sign up to Join Dementia Research today and see how you too can make a difference.