18.05.2025
“Don’t wait until you get ill, let’s find out how to stop you getting ill”
To mark Dementia Action Week (19 – 25 May), we hear the inspiring story of Mary Stewart-David, a south London writer, consultant narratologist, and dedicated dementia research participant. With years of participation, Mary continues to champion research that could change the future for people affected by dementia, including her own family.
Mary lives in Dulwich Village in south London with her husband Peter. With 2 children, a thriving career, and ongoing studies, she juggles a busy life yet still finds time to contribute to dementia research.
"I'm determined to do everything I can"
Mary’s motivation to take part in research is deeply personal. She saw her mother, and before that her grandmother, suffer the devastating effects of dementia. It was an experience that strengthened her determination to help with research.
“My mother came to live with us after her dementia diagnosis. There were many happy times, but even more distressing moments as she eventually succumbed to this dreadful disease. As a family, we felt helpless about our inability to give Grandma the long and happy retirement she deserved. Being an active research participant is a way for us to make a difference. I know Grandma would approve.”
From first steps to long-term commitment
Mary’s involvement began with a study at Maudsley Hospital in south London looking at blood biomarkers of Alzheimer’s. Since then, her participation has grown significantly.
“I’m on several mailing lists of research participants, so I get asked regularly to take part, and I sign up when I can. Some studies involve site visits and can take a whole day, others are online. Many of them run over months or even years. I’m still working and studying, so I fit this around business and family commitments.”
Her recent research involvement includes:
Taking part in a Biobank study, including blood, cognitive and DNA tests, and full-body and brain scans
A drug trial exploring links to the ‘dementia gene’
Multiple online brain health tests and lifestyle questionnaires
"It's all very reassuring-so far, my brain is in good shape!"
Participation for Mary hasn’t just been about helping others. It’s brought personal insight, reassurance, and meaningful family discussions.
“I’ve been tested for the ‘dementia gene’ and can now tell my family I don’t carry it! That knowledge alone has been a huge comfort. I’ve also learnt so much about the frontiers of dementia research and have received valuable advice about staying active and engaged as I grow older.”
She adds: “I’ve done brain scans, cognitive assessments, blood tests, and I regularly complete online questionnaires. It’s all very reassuring – so far, my brain is in good shape!”
These experiences have inspired conversations at home too.
“I’ve encouraged my children to engage with medical research. It’s in their interests to keep their elderly parents healthy and independent! As a family, we’re part of a UK-wide ongoing health study. Research is something we do together.”
"Don't wait until you get ill, lets find out hoe to stop you getting ill"
Mary believes passionately that everyone should consider supporting dementia research. Anyone can take part, whether they have a diagnosis, know someone who does, or simply want to help improve outcomes for future generations.
“We all need to get interested in research because it affects our lives. The most important thing to say is that prevention is better than cure. Don’t wait until you get ill, let’s find out how to stop you getting ill.”
Mary continues to sign up to new studies whenever possible and urges others to do the same.
“As a researcher myself, I know how hard it can be to find willing participants. I’ll always say yes if I can, especially when the opportunity could help stop dementia from taking more lives.”
Mary's story
Mary's story
0:1010 secondsMy mother was born in 1915, two or three years before women had the vote. So my mother was the
0:1515 secondsarchetypal feminist. She was a campaigning journalist. She was a really fascinating and
0:2222 secondsamazing and difficult woman. When my mother was in her late 70s, she started forgetting
0:3131 secondswhere she lived. She'd go out to the shops and then she couldn't find a way back and at that point my mother was living on her own and it became progressively more obvious that
0:4141 secondsshe wasn't going to be able to manage at home, so we had to have granny come and live with us and that was quite a big deal, living with somebody
0:4949 secondsand becoming a carer for somebody who is in an advancing stage of dementia. 0:5757 secondsAs time went on her personality changed. Eventually she lost her sense of self, which
1:041 minute, 4 secondswas very distressing but she also became more and more dependent on us, more physically disabled as
1:111 minute, 11 secondswell as mentally disabled and it it takes its toll. We are blessed in that we are very near a teaching
1:181 minute, 18 secondshospital and one of the professors there was doing some research into dementia, they were already caring for my mother so the first thing they asked is if my mother would participate in dementia
1:291 minute, 29 secondsresearch. They were looking for biomarkers in the blood and because they wanted a close family
1:341 minute, 34 secondsrelative, I got sucked in as well. I felt totally powerless when my mother was ill. There wasn't
1:411 minute, 41 secondsany way of arresting the disease that she had but I can help with being a participant in research.
1:491 minute, 49 secondsIf you want to be a participant, whether it's for dementia or any other medical research, you can
1:541 minute, 54 secondsdo it in a very simple way. So it doesn't hurt, it doesn't take a lot of time. You can do something
2:012 minutes, 1 secondlike a computer test at home once a month. I get an email saying 'can you just click on this link, take this little test' and it's usually like a little bit of mental arithmetic and then
2:102 minutes, 10 secondssomebody crunches the numbers with that, that's all you do. That's a starting point for research
2:152 minutes, 15 secondsand it doesn't take much effort. Then if you want to go a stage further you can start giving your
2:212 minutes, 21 secondstime to a particular research project. With dementia, they're looking really at mental
2:262 minutes, 26 secondsfunction obviously but also general health, so you might spend a day with the researchers and
2:332 minutes, 33 secondsyou know the upside is that you get a good check up, you know, you walk out knowing
2:372 minutes, 37 secondsyou're okay. You know you're helping. It's hugely beneficial. When you've lived with dementia you
2:442 minutes, 44 secondswouldn't want anybody else to go through that. It's a very unpleasant disease, it's incurable
2:492 minutes, 49 secondsand anything we can do to either find a drug for treatment or, you know, eventually a cure, that would
2:572 minutes, 57 secondsjust be amazing, so please do get involved with the research if you can and make a difference.
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