The Dementia Trials Accelerator, led by Health Data Research UK and the UK Dementia Research Institute, aims to increase the number of people taking part in clinical trials. But that can’t happen without the participants – each of whom have their own stories to tell.

Richard’s story

Norman, my maternal grandfather, was the first in my family who was diagnosed with dementia. I still remember the confusion of seeing him try to post his slippers in the gas fire. About 15 years after my grandfather died, my grandmother then got dementia, and she also passed away from it.

Subsequently my mother was diagnosed with dementia about five years before her death. Before her diagnosis, small things began slipping – my mum was getting lost on routine drives, bumps were appearing on her car. My siblings and I started to get more concerned, and my mother was refusing to see her GP. In the end, our family felt we couldn’t ignore it anymore. It wasn’t going to go away. I effectively had to strong-arm my mother into a dementia assessment, which was very difficult.

Photo of Richard's mother
Richard’s mother in her earlier life (Photo provided by Richard)

I can remember that my mother did a test where they said three numbers backwards and asked her if she could remember them, but she couldn’t. This then led to a brain scan, which again was tricky because my mother had a fear of going into confined spaces and those machines are so loud.

My mum was eventually diagnosed with both vascular dementia and Alzheimer’s. Prior to that, she was very much in a state of self-denial because she’d seen her mother decline. And consequently, she knew what was happening to herself.

Before her diagnosis, my mother had been a vibrant, independent woman living out in the countryside. Moving into town wasn’t something she wanted at first, but once she got her diagnosis, she recognised it was time we moved her into a flat and organised some modest care for her, about one or two visits daily, with my sister taking on a huge personal responsibility to support with a lot of the home care.

Gradually my mum deteriorated and we needed to organise more care for her. She started to develop more health problems and we increased the carer hours significantly up to 10 hours a day, then moving to overnight, live-in carers.

Behind all of this was the relentless weight of financial stress. I watched my mother’s life savings drain away. It was a constant, heavy worry on top of everything else.

In the two years before my mum’s death, she was utterly miserable. She was stuck in a fourth-floor apartment with a decent view of the park, but her health meant she couldn’t really go outside. It was like watching a princess trapped in a castle, which was heartbreaking to me.

Getting involved in the Dementia Trials Accelerator

After my grandparents and mother’s experiences I wanted to get involved in research that will hopefully help us better understand the causes of dementia. Whether it’s high blood pressure, bad diets or other similar things, I hope that this can be better understood then turned into strong public health messages.

About 20 years ago, I was diagnosed with a heart condition. Since then, my way of dealing with it has been to chuck myself into knowing as much as I can, which has led me into getting involved in charities and advocacy. So far, I have been a patient member of NICE task forces working on Heart Failure guidelines, I have spoken at medical conferences and become involved in the Royal Brompton Hospital’s research function.

I think it’s important for patients or people with experience to get involved in studies because they can help shape what is researched, its direction and the outcomes. That experience also brings a certain relevance, which researchers find helpful in guiding studies, formulating questions or inviting the subjects in.

It was because of my years of involvement in heart research, alongside my family’s experience of dementia, that I was inspired to get involved with the Dementia Trials Accelerator.

Hopes for the future

I’m hoping there will be some insights which will allow further exploration of the causes of dementia. Whether it is because of the type of lives we lead, or the environment, whatever, I hope the causes can be better understood and treatments found. In the immediate term, my hope is to find things that will either slow or block the progress of the condition.

Research can’t do everything. There are public health issues to be tackled. But the research could at least decelerate the progress of it so people can stay with their family longer. I don’t think that just one programme is going to find a magic bullet, it’s a whole combination of things.

Final thoughts

Dementia along with things like diabetes, chronic kidney disease and other conditions are hugely affected by how people live their lives. It’s about limited exercise, eating certain foods, a bad environment. We need to turn that around. These are all public health issues. It’s for the government and health departments to lead on, to help change an entire population’s behaviour.

If people receive the right guidance then perhaps we might not just increase the length of people’s lives, but maintain a higher quality of life throughout that period.

Find out more about the Dementia Trials Accelerator.