Nicole Jones, Co-Founder of the Stevenage Dementia Involvement Group, discusses how she formed the dementia-focused public involvement group, which shapes dementia research and services in Stevenage. Nicole shares tips for researchers on how to set up their own public involvement group.
Nicole Jones is a Senior Programme Support Officer at ARC East of England and prior to this role, she was an ARC funded Senior Research Assistant working under the Ageing and Multi-Morbidity theme.
When the ARC East of England launched in 2019, I was involved with engaging with communities in Stevenage and one of my priorities was setting up a Public Involvement Group that was specifically for people living with dementia and their families and carers.
I have had personal experience supporting my grandfather, who lived with Alzheimer’s Disease for many years. Back in 2017, there were only a small number of groups available locally for him to attend, but I have lovely memories of going to our local dementia singing group and seeing his face light up when they passed around the biscuit tin. I have always been drawn to working with people living with dementia and improving their experiences, which led me to apply for a role as a researcher on the DEMCOM study, which was a Department of Health and Social Care funded national evaluation of Dementia Friendly Communities. As part of this study, I visited multiple sites across England working towards becoming dementia-friendly communities and also met founders of the Sheffield Dementia Involvement Group (SHINDIG). I was inspired to create a similar group in my hometown of Stevenage, Hertfordshire, where there was no such group available at the time.
The Stevenage Dementia Involvement Group
Funded by ARC East of England, The Stevenage Dementia Involvement Group was formed in 2020. The aim of this group is to bring together people living with dementia and their carers, researchers and organisations to influence what research takes place in the area and the planning of new and existing services. The creation of the group benefited both group members and guests: group members use their experience to shape local research and services, and guests get impactful feedback and input from people living with dementia - the experts themselves! It also provides a safe space for group members to discuss their experiences.
Since 2020, the group has been involved with 15 different projects (some guests visited multiple times) and collaborated with researchers, NHS England, Hertfordshire Partnership NHS Foundation Trust, Hertfordshire County Council and Stevenage Borough Council.
On forming this group, I met with Su Harvey, founder of The Red Shed Stevenage and also met with other local groups Music24 and Hertswise, to spread the word about this new involvement group and get some ideas from potential group members as to what topics they would like the group to cover. I also knew of a lot of researchers who would benefit from a group like this being available and by the time we set up, we already had a number of research projects lined up that wanted to visit.
“By showing up, getting input into their work, making changes to their work and providing feedback to the group all these individuals have shown they acknowledge the importance of people living with dementia’s views and experiences and their commitment to improving their projects and services.”
Tips for setting up your own Public Involvement Group
Public involvement means involving people in research or projects as partners rather than research participants. This is essential to ensuring that research stays relevant and concentrates on the areas that they feel are important.
Setting up a public involvement group takes time and commitment, but it is so important that people with lived experience contribute to research. Here are some tips from my experience on setting up and supporting a Public Involvement Group:
- Visit local groups and communities to understand their priorities before setting up your group. This is important to understand what is available and the local need. Ask groups to point you to other groups they know about.
- Identify the people who are connected with the wider community you’ll be working with to help you make contact with people. If you find similar names are coming up when talking to people in the community then these are the people you want to reach out to.
- Make your advertising materials accessible- include photos of the venue and facilitator if appropriate. Accessible materials benefit everyone and can make all the difference to someone attending your group.
- Work together with the group to decide on the topics for the sessions so that the topics stay relevant. The group should be a partnership and including topics that people are interested in will help to engage group members.
- Let the group know any questions or topics of the session you have in advance. It is helpful for group members to have time to think about their answers and ensures the group members and guests get the most out of the session.
- Offer alternative methods and support to people to join the meetings (e.g. hybrid meetings, 1-to-1 phone calls if requested). Offering this extra support can make the difference in group attendance and let group members know that you really value their input.
- Allow time at the beginning and the end of the group to settle in and debrief. I've found this gives group members time to get comfortable with one another and makes the group feel less formal and intimidating.
- Think about how big you would like the group to be and whether you should split into smaller groups to make sure everyone gets a chance to speak. The accessibility of the room is also important in these situations- is it too small and cramped, is it too large and echoey? Will lots of different voices speaking at once be too overwhelming?
- Reimburse members for their time and travel and make sure that it is arranged as soon as possible after the meeting (and provide refreshments). This is important so that group members know that their input is recognised, appreciated and valued.
- Provide feedback about how ideas from previous sessions have been taken forward. Important so that group members know how they have shaped a project or service and whether their comments were useful.
- Think carefully about the date, time and length of the session. We meet the same day and time every month and meet for no longer than 1hr 30. This might not work for all groups so offer a range of times/day options to fit in with different schedules.
- Be aware that your group does not necessarily represent the population. We are aware that feedback from our group is from a select group of individuals and we are always striving to make the group more inclusive of people at different stages of their dementia journey and/or from different backgrounds.
- Plan the future and sustainability of the group. It is important to make sure the group is not reliant on one individual organising it.
I am incredibly proud of being part of the set up of the Stevenage Dementia Involvement Group and meeting so many wonderful people in the process. I'm honoured that people have chosen to share their experiences with a view to make life better for others living with dementia.
It is exciting to see what the future holds for this group. Going forward the group intends to work more with the Stevenage Borough Council Dementia Sub Group which is a group of professionals who meet quarterly to push forward Stevenage's Dementia Friendly initiative.
To find out more about the group and read our summary reports, please click here.