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We Do This Together

A Reflective Analysis on Collaborative Research With People With Dementia

Bibliographic Data

ID5954019
AuthorsJacoba Huizenga (0000-0001-9596-2816, Tilburg University), Herma Tigchelaar (0000-0001-6687-8674, University of Applied Sciences Utrecht), Edwin Doorn (University of Applied Sciences Utrecht), Mike Geurtsen (University of Applied Sciences Utrecht), Richard Den Hartoog (University of Applied Sciences Utrecht), Anita Linskens (University of Applied Sciences Utrecht), Gerda Van Tongerloo (University of Applied Sciences Utrecht), Frank Zwertbroek (University of Applied Sciences Utrecht), Jean Pierre Wilken (0000-0003-1147-2970, University of Applied Sciences Utrecht), Nienke Bleijenberg (0000-0002-9964-7212, University Medical Center Utrecht), Aukelien Scheffelaar (0000-0001-9673-5164), John Keady (0000-0001-8243-6913, University of Manchester), Tine Van Regenmortel (0000-0002-1344-7982, KU Leuven), Sascha Bolt (0000-0003-1570-0432, Tilburg University)
Year2025
Volume24
Publication date2025-10-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueInternational Journal of Qualitative Methods (JOURNAL)
Journal identifiersISSN: 1609-4069 • E-ISSN: 1609-4069
PublisherSAGE Publishing (PUBLISHER • US)
DOI10.1177/16094069251394256
OpenAlexW4416011649
LanguageEN
Citations received1
References cited52

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

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Unique citing works1
Citations per year1
Citation span2026 - 2026 (1)
Citation velocitycurrent
Highly citedNo
Citation typesNeutral: 1

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