Newsletter 20 – February 2023

20th Edition – February 2023

Welcome to the latest edition of our newsletter!

And this may well be the penultimate one – as funding for the programme (or at least this phase) finishes at the end of February 2023. Sad… but we’ve got loads of positive news to share with you….

The Dementia Enquirers reports

We have now funded and supported an amazing total of 25 mini-projects, all designed, led and delivered by DEEP groups (people with dementia). Most of these are already up on our website here.

The final cohort of projects met up in November online. We had presentations from five of the projects, all really positive about the experience.

Related projects

The programme has opened up many new opportunities for the Pioneers and others involved in Dementia Enquirers. They have:

been involved as co-researchers in a project on public transport and mental health (funded by Motability, led by Mental Health Foundation)
been invited to observe and feed back on a Research Ethics Committee for the Health Research Authority, as part of their Think Ethics project
co-produced a Theory of Change for the STRIDE-England project on dementia services
delivered more training to the Leaders’ Forum (Research in Practice) made up of senior leaders in local authorities. The feedback from the organisers was very encouraging:

You certainly got the delegates thinking and talking about what good integration looked like in reality for people with lived experience. You sparked lots of brilliant conversations both immediately afterwards and at the end of the event. We had lots of fantastic feedback about your video too. If you could pass on our thanks to George and let him know how valued his contribution was, that would be fantastic. He gave so much helpful and practical advice around how we can all work more effectively. It all really struck a chord with people, and will hopefully help them to think about how they can shift their organisation’s practice.

Gold Standards for Ethical Research

We have recently updated and revised our ethics pack under the new title ‘Dementia Enquirers Gold Standards for Ethical Research’. You can find it here. It contains a very useful and accessible checklist which anyone can use to ensure their project is ethical from the perspective of people with dementia.

Dementia Enquirers film

There has also been lots of very positive feedback on our new film (the link is here.)

We would love YOU to take every opportunity to share it with colleagues and include it in the agendas of your conferences or webinar series. Let us know if we can help!

We also had a great discussion about Dementia Enquirers at our DEEP online 10^th Anniversary Festival. You can find the recording here.

Webinars

As the programme comes to an end, we and our Advisors are hosting several lunchtime webinars to get the messages out to different audiences. Please feel free to sign up to any or all of them:

Wednesday 8^th March 1-2 pm

Dr David Crepaz-Keay explores how the learning from Dementia Enquirers addresses issues of ‘epistemic injustice’. He is joined by philosophers Anna Berqvist and Prof. Lubomira Radoilska, and George Rook, one of the Pioneers. Sign up at Eventbrite here.

Thursday 9^th March 1-2 pm

‘What does the learning from Dementia Enquirers mean for NHS researchers?’ Dr. Rosie Ashworth will explore this question and facilitate a discussion. Rosie is a research psychologist leading Partners in Research, the patient and public involvement group for NRS Neuroprogressive and Dementia Network. She also co-leads RICH (Research in Care Homes) Voices for ENRICH Scotland. Rosie is an advisor for Dementia Enquirers and strongly advocates co-produced research. Register here at Eventbrite

Tuesday 14^th March 1-2 pm

Prof Tom Shakespeare focuses on ‘What the learning from the Dementia Enquirers programme means for dementia research and wider disability research’. He is joined by Dr Joe Webb and Irene Donaldson (one of our Pioneers). No registration needed – pop it in your diary and join on this Zoom link. We are grateful to London School of Hygiene and Tropical Medicine for hosting this webinar.

Congratulations!

…to the Ecredibles, who were shortlisted as finalists in the University of Edinburgh Good Research Practice Awards in the category of ‘Positive disruptor award’. This was a great achievement for the first year of this project.

We are also thrilled that the Dementia Enquirers (i.e. all the people involved in the projects, and the Pioneers) have been selected as finalists in the Dementia Hero Award for Research and Innovation. The final selection is on 28^th April – please keep your fingers crossed for us!