The Dutch co-researcher group Brain Power, based at Utrecht University of Applied Sciences, recently celebrated its fourth anniversary. It is the first group in the Netherlands where people living with dementia work as equal partners in research. Originally launched as part of Jacoba Huizenga’s PhD project, Brain Power has grown steadily and welcomed five new members in recent months. Today, the group is actively involved in several research projects.
The Brain Power approach was featured in an article published last November in the International Journal of Qualitative Methods, with a public-friendly version planned for next year. The group also authored the book “Hoe leef ik met dementie?” (How Do I Live with Dementia?), and two members of the group (including myself, as Vice-Chair of the group), presented the English language edition at the Alzheimer Europe Conference, to Kevin Quaid, Chair of the European Working Group of People with Dementia (EWGPWD).
Inspired by the Dementia Enquirers initiative in England, Brain Power demonstrates that people with dementia can be true partners in research—and hopes to inspire other research teams to follow this path.
Being part of Brain Power gives me a voice in research that truly matters for people like me. It shows that we can contribute, not just as participants, but as partners shaping the future.
