Hi! I’m Rosie and I am an Advisor for the Dementia Enquirers.
This blog is a reflection on what being involved in Dementia Enquirers has meant for me, as well as what I think the Dementia Enquirers’ work means for dementia research more broadly.
I was very fortunate that, while doing my Dementia Research Doctorate, I was able to work a day a week with people living with dementia, due to being part-funded by the NRS Neuroprogressive and Dementia Network. From the start, this dual role helped me recognise the value of involving people with lived experience in research. However, during that time I still only really involved people as participants.
Once I had finished my PhD and became a qualified researcher, I joined a research project which looked at co-producing a new questionnaire with older adult carers. The project was the gateway to me seeing how people with lived experience could work alongside academics to produce high quality research.
Dementia Enquirers takes that co-production approach one step further, by having people with lived experience in the driving seat of research, and dementia researchers acting as advisors when needed.
I was invited to join the Dementia Enquirers as an Advisor in 2019, and, several years later, I still feel so privileged to have been offered the opportunity to get involved.
One of my first meetings with the Dementia Enquirers Pioneers was just after the group had debated which research projects to fund. The energy in the room was electric. There was so much passion and excitement for what could be achieved. The Pioneers worked tirelessly to discuss different projects and come to fair decisions about which projects would go forward. As Advisors, our role was then to be on hand for any questions that debating the research projects had raised.
It’s hard to put into words how much joy these meetings held. Aside from that though, there was also a genuine interest in the science behind research, and motivation to learn more about the different parts of the research process. The Pioneers were so open to our input and there was a strong group dynamic, where everyone wanted to make the project work. The following meetings all had the same vibe of excitement, pride and creativity. The work was often intense and tiring, but we still managed some socialising – and singing! I feel so fortunate to work with the Pioneers, Innovations in Dementia, and other Advisors whose work I admired so much. It always feels like working with friends.
One of the main outputs I helped the group create early on was the publication ‘How to Do a Research Project – Simple guidance and ideas for DEEP groups’. Creating this guide was a great way of applying my knowledge and experience for an accessible summary of research-related activities. I regularly share this guide, particularly with people who are keen to start co-production. I strongly believe that, for people with lived experience to get involved, they need accessible information about what research really is. Only then can someone make an informed decision about whether it’s of interest to them. I have taken the lessons I have learned doing this and applied it to all subsequent research materials.
Another area of work that I have greatly enjoyed seeing develop, and I am keen to build on as part of future collaborations, is the ethics of research. The group developed the Gold Standards for Ethical Research which we strongly encourage ethics committees reviewing dementia-related proposals to read and implement. It was really interesting to discuss risk and distress from the perspective of people with the lived experience, and to move away from the risk-adverse assumptions that the medical approach often takes.
Finally, my role as an Advisor led to me supporting the SUNShiners group in their research survey. It was fantastic to be welcomed into the group and see how much they had achieved. We then worked together to explore how best to analyse all the data they had managed to collect (there was a lot of it!). The role encouraged me to think creatively about how to apply my research skills while making sure the group still felt ownership of the analysis.
It is clear how much I have enjoyed being part of the Dementia Enquirers. The Pioneers and Advisors have been so generous in sharing their stories and expertise. It shows just how important the right team can be, especially when trying something new. I will greatly miss the project, but it will not be the end of our collaborations. The lessons I have learned around accessibility and shared ownership/power form the foundations of everything I do.
On reflection, there are a few key messages that I think future research/researchers should keep in mind:
- Ask people with lived experience what dementia means to them.
- Involve people living with dementia in the design and development of research – it is so important and strengthens the work in more ways than you can predict.
- Recognise your own strengths and weaknesses, and prioritise building strong collaborative relationships.