“We’re on a journey. We don’t know where we’re going, but we’re going together”

“We’re on a journey. We don’t know where we’re going, but we’re going together”

This week we have announced 11 ‘Dementia Enquirers’ grants, awarded to groups in the DEEP network. The successful projects aim to find out about:

  • the benefits of Amazon’s Echo (Alexa)
  • how to create dementia-responsive video content about using Amazon’s Echo (Alexa)
  • the essential requirements for a multi-cultural meeting centre
  • whether class and ethnicity have an impact on how a diagnosis of dementia is given
  • the impact of people with dementia educating professionals
  • what people with dementia and Admiral Nurses know about each other
  • people’s perceptions and experiences of dementia – the pros and cons of considering dementia to be an invisible disability
  • the emotional and practical experiences of stopping driving
  • the needs of people with dementia who live alone compared to those living with a care partner
  • what transport systems can do to help people live independently with dementia


The motivation for many groups who applied was to find out about issues that are important to them and also to learn some new skills as a group. Mentors from the world of research will be available to provide advice and support. But importantly “they will be coming into our world rather than us going into theirs”. These projects are owned by DEEP groups and led by members with dementia:

“We hope this process can show people just what we can do! We don’t know what this can achieve. But through this process it could be life changing.”

Five people with dementia – known as Dementia Enquirers Pioneers – made recommendations to the National Lottery Community Fund (our funder) about which projects to fund. They recorded decisions on an expanded score sheet – using whatever worked best for them, including numbers (1-5), drawings ( 🙁 – 🙂 ) or words they came up with that mapped onto these scores (super sad, sad, fine/OK/neutral/so-so, happy, super happy).

“Sometimes we used facial expressions and movement to indicate our feelings and scores. For one of us an excited dance movement indicated a (5) – super happy!”

You can view a film of the Pioneers (and some advisors) reflecting on the grant making process https://bit.ly/2LXkmcT

So, watch this space! The 11 projects are about to begin and will work on their topics for a year – with support from Innovations in Dementia, mentoring from research/evaluation allies, and via their connections to each other. A guide to carrying out research projects is available free of charge here https://bit.ly/2JD6WkJ

We hope that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia. Early in 2020 we will announce another round of Dementia Enquirers grants for DEEP groups.

We don’t know where we are going, but we are going there together!

Rachael Litherland
Co-director, Innovations in Dementia




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