The Stevenage Dementia Involvement Group is a dementia-focused public involvement group which brings together people living with dementia and their carers to help shape research projects in Stevenage. The group has been involved in 14 different projects so far, including Stevenage Borough Councils initiative to make Stevenage a dementia-friendly community.
In the video below, Nicole Jones (Senior Programme Support Officer, ARC East of England) introduces the Stevenage Dementia Involvement Group, and we hear from attendees, Anne, Tim, and Tig, who share their experiences of this group. Click to play:
Funded by ARC East of England, the Stevenage Dementia Involvement Group was started in 2020 by Nicole Jones, Elspeth Mathie, (Co-lead of the Inclusive Involvement in Research for Practice-led Health and Social Care theme, ARC East of England) and Su Harvey (CEO- The Red Shed Project).
It was found that there was a distinctive need for more dementia-focused public involvement groups in Stevenage. To address this, the project team brought together people living with dementia and their carers to shape dementia-focused research and services. The group achieves this by forming direct communication links between researchers and the dementia community that the research impacts, whose voices are often underrepresented in research. The group also provides people living with dementia and their carers with a safe space to discuss their own experiences.
“The creation of the group benefited both group members and guests: group members use their experience to shape local research and services, and the guests get real raw feedback and input from people living with dementia - the experts themselves!”
Nicole Jones, Senior Programme Support Officer, ARC East of England
Making an impact in dementia research
The Stevenage Dementia Involvement Group has so far had 16 sessions on the third Thursday of every month. On average, there are 8-10 attendees, with numbers increasing as the group evolves. The group welcomes researchers from our partner universities, and it has welcomed several guests from different organisations, such as NHS England, Hertfordshire Partnership NHS Foundation Trust, and Stevenage Borough Council.
The group has been involved with 14 different projects and collaborated with NHS Trusts and Borough Councils to make local services better for the people who use them. Examples of this include: contributing to the development of a Dementia Friendly Activity Brochure made by University of Hertfordshire researchers and Stevenage Borough Council; inspiring the setting up of a new walking group in Stevenage; sharing their views on how to make Stevenage more dementia-friendly with Stevenage Borough Council; and refining a Dementia Urgent Care Plan that NHS England launched early in 2023.
One guest who attended the group on behalf of NHS England said: “What a lovely group! The group identified how the form presented could be simplified and the suggestions have all been incorporated. They were constructive and supportive and a really fab bunch.”
“I am so pleased to be given the opportunity to be involved with the group and know that my thoughts and feelings are being listened to and hopeful that this may lead to positive change.”
Anne, The Stevenage Dementia Involvement Group Member
Next steps
Going forward, the group intends to join the Stevenage Borough Council Dementia Subgroup, which is a group of professionals who meet quarterly to push forward Stevenage’s Dementia Friendly Community initiative.
If you would like to join the group as a member or a guest please contact us Nicole Jones (Nicole.Jones@cpft.nhs.uk) or the ARC East of England Core Team (ARCOffice@cpft.nhs.uk).
