Blog by Jacoba Huigenza, a PhD candidate and lecturer in Social Work at the University of Applied Sciences Utrecht and Tilburg University
June 2022: My first contact with the Dementia Enquirers
Is that possible? Yes, as evidenced in England. Today I met the Dementia Enquirers digitally. They conduct their own research and participate in research groups. And they offered me advice on what I can do to get people with dementia more in the driving seat in research. The panel I met was diverse, including members from different backgrounds, such as a migration background and the LGBTQ community.
I did not get that advice for nothing. The Dementia Enquirers selected a number of submissions to review, based on the researcher’s motivation in a video pitch. So I was one of the “lucky ones”.
When you reflect on research about and with people with dementia, it starts with the question: whose research is it anyway? Is it the researcher who comes up with the research question? Or do people with dementia determine what they think the research should be about?
Not everyone with dementia wants, or is able, to be a researcher. But, as is now my experience here in the Netherlands, many do want to participate in research. How do you as a researcher listen to what is really important to people? And do you also try to reach those people who are less likely to be heard, so that the group that participates is diverse and a reflection of society? Being able to voice your opinion, also in research, is a human right.
The Dementia Enquirers gave much more input on how to work towards creating opportunities for research together. Very exciting to work on. a scoping review with a group from a Meeting Centre. Because they had asked for it themselves…
February 2023: The legacy of the Dementia Enquirers
This week, I had the opportunity to meet with a Dutch group of people with dementia for the second time. The group had grown from four people to six. Their power is amazing!
Reflecting on my experience with the Dementia Enquirers, I have learned several important lessons. Firstly, their encouragement and support have been a source of strength for me. In addition, investing in the empowerment to bring a group people together is crucial. It took half a year before I could really start. Based on their advice, I sought out various ways and avenues for this, because a flyer is far from enough!
Another key lesson, which I am still discovering, is how to work on shared ownership of research. As a PhD student, I must learn to conduct my own research. Working on a process of co-research in this is a challenge, but also an adventure. This is also about how you use the power of a group and how you communicate. I am already using a few practical tips, such as, in written communication, a calm large font. One participant even shared this tip with professionals at his Meeting Centre.
Finally, an exciting spin-off arose when I shared with the Dementia Enquirers my first article, about everyday life experiences of people living with MCI or dementia. One of them, George Rook, helped me create a shorter version of the article for professionals. A great collaboration! You can read the result here.
The Dementia Enquirers gave much more input on how to work towards creating opportunities for research together. The beginning has been made… Today I shared the results of my submitted scoping review with a group from a Meeting Centre.