“We Do This Together”: A Reflective Analysis on Collaborative Research With People With Dementia

ResearchComponents.InformationTable.Publication.Authors Jacoba Huizenga, Herma Tigchelaar, Edwin Doorn, Mike Geurtsen, Richard den Hartoog, Anita Linskens, Gerda Van Tongerloo, Frank Zwertbroek, Jean-Pierre Wilken, Nienke Bleijenberg, Aukelien Scheffelaar, John Keady, Tine van Regenmortel, Sascha Bolt
ResearchComponents.InformationTable.Publication.PublishedIn International Journal of Qualitative Methods
ResearchComponents.InformationTable.Publication.PublicationDate 2025
ResearchComponents.InformationTable.Publication.Lectorates Participation, Care and Support
ResearchComponents.InformationTable.Publication.PublicationType Article

ResearchComponents.PublicationContent.Header

In recent years, there has been a growing focus on incorporating the perspectives and experiences of people with dementia in research. However, collaborative research that engages with their everyday lives remains limited, and there is little reflection on this research approach. Our research project on everyday life with dementia was conducted in the Netherlands by a team comprising academic researchers and co-researchers with dementia. The co-researcher group of six people with dementia called themselves Brain Power. The group was the first of its kind in the Netherlands. This study aims to reflect on the processes that underpinned the collaborative research over a three-and-a-half-year period. To identify significant elements in the collaboration, individual reflections were collected from Brain Power members and academic researchers, and three joint group reflection meetings were obtained. A reflexive thematic analysis of the data identified four main themes: (1) Forging a group identity; (2) Learning together as a driving force of co-creation; (3) Sharing experiences to transform perceptions of dementia; and (4) Carrying on our work together. These themes are illustrated using descriptions of the ways of working and reflections on the process. The results indicate that long-term collaborative research with people with dementia is feasible and adds a deeper level of understanding and authenticity to the outputs. Working collaboratively on a research project requires specific skills from both academic researchers and co-researchers with dementia.

researchcomponents.publicationcontent.personslist.publicationauthors

  • Jacoba Huizinga | PhD Candidate| Participation Care and Support
    Jacoba Huizenga
    • PhD candidate
    • researchcomponents.publicationcontent.authorlectoratelabel: Participation, Care and Support, Proactive Care
  • Jean-Pierre Wilken
    • Professor
    • researchcomponents.publicationcontent.authorlectoratelabelsingle: Participation, Care and Support
  • Foto  van Nienke Bleyenberg
    Nienke Bleijenberg
    • Professor
    • researchcomponents.publicationcontent.authorlectoratelabelsingle: Proactive Care
ResearchComponents.DetailedInformation.Language English
ResearchComponents.DetailedInformation.PublishedIn International Journal of Qualitative Methods
ResearchComponents.DetailedInformation.Keywords collaborative research, dementia, citizenship, lived experience, participatory research
ResearchComponents.DetailedInformation.DigitalObjectIdentifier 10.1177/16094069251394256
ResearchComponents.DetailedInformation.PageRange 1-15