21st Edition – May 2023

Welcome to the final edition of our newsletter… for the time being!

As funding for this phase of the programme has now finished, we’re all taking a breather for a bit.  But we’ve got loads of positive news to share with you…and lots of leads for new related projects too!

A national award!

We are hugely excited to have won the 2023 Dementia Hero Award for Research and Innovation! This is great news, not only for the Pioneers who have shaped the programme at every stage, but for the several hundred people with dementia who have been involved in all the individual research projects. We can now call Dementia Enquirers an ‘award-winning programme’!

Many of the Pioneers joined Philly and Rachael at the awards ceremony at the Grand Hotel, Birmingham. Food and wine were consumed, and a huge cheer went up when we heard that we had won! This award means such a lot to all of us who have worked so hard. Find out more about the awards here.

Our residential finale at Woodbrooke

In early March, the Pioneers, Advisors and enablers all came together for 3 days at the lovely Woodbrooke Centre in Bourneville, Birmingham.

Having updated everyone on the work that has been going on, we set about preparing for Day 2, on which we would be holding a round table event for invited senior staff from several major funders. We had a lot of fun rehearsing, but we had a serious aim too – we needed to ‘pass on the baton’ of all our learning, and also try to find potential funders for a next phase.

On Day 2 everything went incredibly well – our guests seemed bowled over by our presentations and discussions, and by the film we showed. Most of them were able to make firm commitments to disseminate our resources through their networks, and in  some cases, to explore future funding. We await with excitement what will transpire.

The final day was more relaxed, with packing, reflections and goodbyes. Woodbrooke will be closing soon – it’s a place we love, so we all felt sad. But we also felt very proud of all that we have achieved over the past 41/2 years.

You can find our Ten Key Messages here.

Congratulations!

A new report, jointly written by George Rook, one of the Pioneers, and Jacoba Huizenga, a PhD candidate at Utrecht University, explores everyday experiences of living with dementia. This scoping review included 58 qualitative studies. The review shows that the change from a clinical care focus to a broader focus on all aspects of everyday life opened rich insights into the insider’s perspective of people living with dementia. But the question was: how to share this scientific publication with a broader audience?

Jacoba Huizenga shared this research report with George Rook, who she had met, together with other Pioneers, during Dementia Enquirers mini internship for early career researchers. George read the paper and responded: “What a wonderful, interesting paper. You have brought together so much of what ‘we’ need to know in order to move support forward. I am going to recommend that all professionals involved in dementia and related social care read it.”

Together they produced an accessible version, specifically aimed at professionals. George Rook also wrote a foreword. This accessible version can be read here.

Jacoba is also supporting a new DEEP-type group called ‘Brain Power’ in the Netherlands – we love their version of our yellow cards

New resources

We have published a number of new resources as part of our legacy work for the programme.

We have updated the Dementia Enquirers Gold Standards for Ethical Research and the How to do a Research Project

And we have a brand new publication, The Dementia Enquirers Gold Standards for Co-Research

You can also find several great blogs here.

And the recordings of our three final webinars on the links below:

Dementia Enquirers: Putting people with dementia at the heart of research

Tom Shakespeare, Joe Webb, Irene Donaldson, Philly Hare

What does learning from Dementia Enquirers mean to the NHS?

Rosie Ashworth and Winnie

What can we learn from Dementia Enquirers about Epistemic Injustice?

David Crepaz-Keay, George Rook, Anna Berqvist and Lubomira Radoilska

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.