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ORIGINAL RESEARCH article

Front. Dement.
Sec. Dementia Care
Volume 3 - 2024 | doi: 10.3389/frdem.2024.1421541
This article is part of the Research Topic Methods of Engagement of Dementia Care Users in Research and Practice Development View all 4 articles

The Psychological Effects of Research Participation on People with Dementia: Findings from a German Exploratory Interview Study

Provisionally accepted
Katja Seidel Katja Seidel 1,2*Claudia Winiarski Claudia Winiarski 1Jochen R. Thyrian Jochen R. Thyrian 2,3Julia Haberstroh Julia Haberstroh 1
  • 1 University of Siegen, Siegen, Germany
  • 2 German Center for Neurodegenerative Diseases (DZNE), site Rostock/Greifswald, Rostock/Greifswald, Germany
  • 3 Institute for Community Medicine, University Medical Center Greifswald, Greifswald, Mecklenburg-Vorpommern, Germany

The final, formatted version of the article will be published soon.

    The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for eight months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and well-being and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.

    Keywords: Patient participation1, participatory research2, Dementia, Psychology4, Qualitative research5, Patient engagement6., Stakeholder engagement7, Patient and public involvement8

    Received: 22 Apr 2024; Accepted: 19 Jul 2024.

    Copyright: © 2024 Seidel, Winiarski, Thyrian and Haberstroh. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Katja Seidel, University of Siegen, Siegen, Germany

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.