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

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
Published in International Journal of Qualitative Methods
Publication date 2025
Research groups Participatie Zorg en Ondersteuning
Type Article

Summary

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.

On this publication contributed

Language Engels
Published in International Journal of Qualitative Methods
Key words collaborative research, dementia, citizenship, lived experience, participatory research
Digital Object Identifier 10.1177/16094069251394256
Page range 1-15

Jacoba Huizenga

Jacoba Huizenga

  • Researcher
  • Research groups: Participatie Zorg en Ondersteuning, Proactieve Zorg