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

Abstract

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.