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,  let’s find out how 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.”

Watch the video below to hear Mary’s story:

Like Mary, you can take part in dementia research  by signing up to Join Dementia Research. We are a nationwide service supported by the National Institute for Health and Care Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland.