Dementia Enquirers is a 3 and a half year project (to the end of 2022), funded by The National Lottery Community Fund,  the largest funder of community activity in the UK.. It’s aim is to put people with dementia in the driving seat of research – by supporting them to lead and control their own bottom-up enquiries on issues they find important. Thanks to National Lottery players we can continue to support people with dementia.”

Consequently, the projects are varied, based on the questions and interests of different groups.  Although the projects started at the end of 2019, groups had to contend with the impact of Covid-19 on their work. There is much creativity, pragmatism and learning contained within these project reports and a large amount of pride:

“We believed we could…and we did!” 

The projects are:

• Thred, Liverpool: How can urban and rural transport systems help people diagnosed with dementia live independently for longer?
• Minds and Voices, York: The pros and cons and particular needs of those living alone with dementia and those living with a care partner
• Beth Johnson Foundation, Stoke on Trent: Does class, ethnicity or intellect affect the dementia pathway?
• Riversiders in Shrewsbury (with Minds and Voices, York): an enquiry into the what DEEP and Admiral Nurses know about each other
• Our Voice Matters, Hartlepool: An enquiry into the benefits of groups for people with dementia
• DEEPNess, Isle of Lewis: The necessary components of a dementia-responsive teaching video
• EDUCATE, Stockport: The EDUCATE Echo project

Visit  https://dementiaenquirers.org.uk/individual-projects/ to read all the project reports.

These are the first grants awarded under the Dementia Enquirers programme. We are now getting ready to support a new cohort of DEEP groups to lead their own research. From our learning so far, some key messages are emerging:

1. People with dementia can lead their own research projects – both drawing on previous life skills and learning new ones to explore the questions that most interest them
2. The research questions that people with dementia generate can be different from existing research questions. They are based on lived experience – on topics that will make a real difference in people’s lives
3. “Being in the driving seat of research” doesn’t mean that you have to do everything yourself. Team work and support can really help. But controlling the research and leading the way gives people with dementia a huge boost in confidence
4. Making the language and processes of research more accessible helps everyone!
5. Research between people with dementia makes communication and engagement more possible, because having something in common increases trust

Notes to editors: 

Dementia Enquirers is a project at Innovations in Dementia. It is funded from 2018-2022 by The National Lottery Community Fund. To find out more visit https://dementiaenquirers.org.uk/

DEEP is the UK network of dementia voices. It connects approximately 100 groups of people with dementia to inspire, share and learn together.  It is supported by Innovations in Dementia. To find out more visit https://www.dementiavoices.org.uk/