Topic
Date published
12/06/2025
During Dementia Action Week, communities across England took part in DEMFEST 2025 – the National Festival of Applied Dementia Research. DEMFEST featured over 20 events where people could meet researchers, share experiences, and learn about new developments in dementia care and support.
This national effort is supported by a £7.5 million investment from the NIHR and Alzheimer’s Society, which created a network of specialist research fellows – known as the Dementia Community of Practice or DEMCOMM – working across 15 regions to improve care and support for people with dementia and their carers.
Shaping dementia research in Nottingham
By Neil Chadborn
On Saturday, May 17, and Tuesday, May 20, my colleagues Esther, Orii, and I organised our drop-in sessions at the New Art Exchange. The aim was to bring research closer to the community and listen to the real experiences of those living with dementia and their families.
We set up a drop-in session with a large TV showing our short film of our public involvement members sharing their experience of getting involved in research. We spoke to members of the public. Two members of a family spoke about their father who had recently died after living with dementia for several years. They spoke about the tensions within the family as they come to terms with the diagnosis and struggle to find appropriate care and support.
Why public involvement matters
At ARC East Midlands, we believe research is at its best when it’s shaped by those with lived experience. People with dementia and their families know what works – and what doesn’t – in real life. Their voices help us focus on what truly matters, from nutrition and socialising to reducing the risk of falls and improving day-to-day support.
I have facilitated group meetings with members of South Asian communities (Punjabi and Gujarati communities and also a meeting at a Mosque) where we have discussed inequalities in dementia care and prevention of dementia. I couldn’t have done this without the enthusiastic help of volunteers from the communities who have helped bring people together.
I have learnt so much from these meetings, about traditional culture, and also the strong tradition of care for family members. This has helped me to think about how digital technology can be developed in future to be complementary to family care.
Celebrating our public involvement video
A highlight of our DEMFEST contribution was the launch of a new video featuring our public contributors. In their own words, they share how and why they got involved in dementia research, and the difference it has made for themselves and others.
You can watch the video here:
It was inspiring listening to our public contributors as they were being filmed – we don’t always ask people why they get involved in research. To hear from their own lived experiences and how this has inspired them to get involved in improving future care was great.
I hope that people may watch the online videos and be inspired to find out about a local research project – there’s plenty of opportunities to get involved!
Looking ahead
Dementia Action Week and DEMFEST have shown how much can be achieved when researchers, people living with dementia, families, and the wider public work together. We are grateful to everyone who joined us at the New Art Exchange and shared their perspectives.
As we look to the future, I hope we can continue to build these connections with communities across East Midlands. Our monthly involvement meetings take place on Fridays in the medical school at Queen’s Medical Centre in Nottingham, and we regularly hold community events.
If you are interested in attending or would like to arrange an event in your local community, please get in touch at neil.chadborn@nottingham.ac.uk – we welcome new voices and perspectives.