Report of the Festival of Dementia Research Event, held on 20th May 2025 at the Wade Conference Centre in Stoke-on-Trent
Event Preparation
May 19th-23rd marked the Alzheimer’s Society “Dementia Action Week”. The NIHR DEM COMM programme had tasked all involved ARCs to create public-facing research “festival events” during this week. Several options were considered, including the traditional PowerPoint “show and tell”, however our NIHR ARC West Midlands team agreed to take a more creative approach reflecting the “festival” spirit. Subhashisa Swain mentioned a documentary film that he was developing about cross-cultural experiences of dementia titled “Life in Embrace” and we all agreed that a film was an ideal event centrepiece. As Subhashisa progressed filming (across India and the UK!), the group linked with a Stoke-on-Trent film theatre to premiere the film. To create a space for discussion about the film and dementia research, a post-show Tea and Cake party was arranged, including research poster displays and a stand for the Alzheimer’s Society. The event was promoted through our networks (local charities, VCSOs, NHS trusts, GPs, academics) plus a special invitation to our dementia PPIE group (a fantastic group set up and coordinated by Chris).
Showtime!
Our day arrived and the film was passed to the projectionist in readiness for a 1pm showing. Our audience took their seats, the lights dimmed and the film began. The documentary showed the experiences of several families (within India and the UK) where a family member lives with dementia. Families told their stories from the first notice of symptoms, witnessing changes over time, and plans for care in the advanced stages, and the film ended with a poem written by one of the family members in an Indian language (Odia). A warm round of applause began as the lights came on at the end of the film. A question-and-answer session was facilitated by Subhashisa, generating thought provoking questions and reflections. One comment highlighted how the portrayal of the experiences of families had captured the “reality” of living with or alongside dementia regardless of any cultural differences. Another praised the film for its positive tone and for avoiding narratives of ‘social death’ that are sometimes applied to people living with dementia. Moving back into the foyer, everyone was invited for tea and cake and for the next hour there was lively discussion about the film, dementia experiences, and the research by the Fellows.
Reflections
As a group we reflected on the event, especially in the context of our experiences of other research events using traditional approaches (e.g. presenter to audience). An evident point of difference was that the film created a space for dementia to be seen as it is, rather than as a research topic, it effectively “brought dementia in”. We feel this changed the audience dynamic, people were more energized, and conversations flowed about the film, people’s own experience of dementia, and about research to address current challenges. Whilst it would be impractical to create a documentary for every research event, we feel that something similar would enable this deeper and richer engagement. It may be that an existing documentary, dementia-based art, literature, or poetry, could be used to facilitate a similar shared experience.
ARC WM DEM-COMM Research Fellows and Affiliates:
Sue Molesworth (Keele University),
Subhashisa Swain (Keele and Oxford Universities),
Chris Poyner (University of Birmingham),
Angela Clifford (Keele University),
Paul Campbell (Keele University and Midlands Partnership University NHS Foundation Trust).
Find out more at: www.arc-wm.nihr.ac.uk/dementia-capacity-development-programme/
