23 Jun 2025
NIHR ARC North Thames Fellows stand in the sunshine in front of the St Pancras & Somers Town Living Centre, a colourful glass venue, where they held the event: (Left to Right) Dr Alex Tsui, Dr Kumud Kantilal, Dr Claudio Di Lorito and Dr Esther Hui.
Dementia Awareness Week is an annual opportunity to highlight the condition and people’s experiences living with dementia.
For the NIHR ARC North Thames’s current cohort of Dementia Fellows, it was an opportunity to showcase their research topics in a public event, open to all, as part of the NIHR National Festival of Applied Dementia Research 2025, or DEMFEST.
People living with dementia have unique needs that should shape the support designed for them. So, the fellows designed the day as an interactive opportunity to explore their emerging dementia research.
Hosted at the St Pancras & Somers Town Living Centre, the event covered a range of topics from prevention through to the experiences of LGBTQ+ people living with dementia. Below you can explore the event via each stall.
If you are interested in this topic, we are holding an online panel discussion to accompany this event on Monday 21st July 2025. The event is open to all. You can sign up via this link.
Understanding social isolation in marginalised communities living with dementia, with Dr Claudio Di Lorito
Claudio’s dementia research has focused on uptake and use of social care services in people with dementia who live alone and have no informal support.
He has also been exploring how can access and use of social support and care services be equitable for people living with dementia from underserved communities, particularly LGBTQ+.
As part of this research, he worked with a creative collaborator the artist Ada Jušić to create illustrated stories showing the experiences of the people they interviewed as part of the research.
As well as displaying the works, they also created a live storyboard exploring the barriers faced by people living at the intersection of several marginalised characteristics.
Ada says: “Presenting research in this way makes it accessible to people who don’t have a background in science and research. And I think it humanises people’s stories and lived experiences.”
Claudio says: “I hope from this research, people understand that we’re all equal but we’re all really different. Everybody’s experience of something is different but at the same time it's just as valid as yours.”
Preventing dementia, with Dr Esther Hui
Esther’s research has focused on the fact that there are 14 modifiable risk factors for dementia, meaning steps could be taken to help reduce likelihood of dementia.
Specifically, Esther has been exploring hearing loss and diabetes medications as risk factors.
At her event stall she was joined by researcher Asha Mohalal, and they invited attendees to learn how up to 45% of dementia cases could be prevented and share their thoughts on improving brain health research. Attendees thoughts and feedback were captured in a visual story of the event.
“One thing that I want people to know or take away from today is that there are changes now that they can make for their future,” Esther says. “There are potential lifestyle changes people can make that might prevent dementia later in life.”
Living with Dementia and Other Health Conditions, with Dr Kumud Kantilal
“We know that dementia never travels alone,” Kumud says. “It’s estimated that up to 80% of people who have dementia have other long-term conditions as well. Interestingly, there’s very little research that has been done on supporting people living with dementia and other long term conditions.”
This has been the focus of her research. Her exhibition allowed attendees to help shape research on how to better support people managing dementia alongside conditions like high blood pressure, depression, or diabetes.
She was joined at her stand by collaborator Nazia Hussain, whose mother had dementia, and who has been sharing her experience of caring for her Mum – particularly as someone from the South Asian Community – via a blog.
Kumud and Nazia found themselves in many conversations with attendees sharing their experiences of trying to access care for their loved ones, and some of the struggles they face.
“The one take away message from today is normalizing dementia. It shouldn’t be seen as something that you should need to hide,” said Nazia.
Personalising Dementia Treatments, with Dr Alex Tsui
“Delirium is inherently so distressing to the patient experiencing it – and to your family members when you see your loved one very confused... It’s a terrible thing to have, and so finding the causes of delirium is hugely important.”
Alex’s research has been using EEGs – a test that measures the electrical activity of the brain – to explore experiences of delirium in dementia patients and try and improve treatment.
By challenging perceptions around conducting research with people experiencing dementia, he and his team have been able to redefine experiences of delirium – showing it is highly variable depending on the individual, and their usual experiences of confusion.
Attendees were invited to see the equipment, hear more about delirium, how it manifests and how it may show up on EEG tests.
Alex says: “I want to instil a sense of creativity and imagination. It’s really important to recognise that, just because someone has a diagnosis of dementia, it doesn’t mean they can’t be included in research studies. This is something that we really need to address as a scientific community.”