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Dementia Enquirers: a new approach to research

Dementia Enquirers is a UK project being supported by Innovations in Dementia, and funded from 2018 to 2022 by the National Lottery Community Fund. The project aims to develop a new approach to research or ‘enquiry’ by supporting DEEP groups (peer support and advocacy groups for people living with dementia) to carry out their own research projects.

Final Reports from the first tranche of Dementia Enquirers Individual Projects to be funded under this program have now been published, and cover a wide range of practical questions, chosen based on interests and concerns of the different groups, including:

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

From the project so far, Dementia Enquirers project leads say some key messages are emerging:

  • 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.
  • 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.
  • “Being in the driving seat of research” doesn’t mean that you have to do everything yourself. Teamwork and support can really help. But controlling the research and leading the way gives people with dementia a huge boost in confidence.
  • Making the language and processes of research more accessible helps everyone.
  • Research between people with dementia makes communication and engagement more possible, because having something in common increases trust.

All the individual project reports are available to read on the Dementia Enquirers website, along with a range of other resources related to the project (films, podcasts and webinars); go to https://dementiaenquirers.org.uk/

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