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Power, Authority, and Voice

Democratizing Research with People with Dementia

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Handbook of Social Inclusion

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Abstract

The involvement and engagement of people living with dementia in research has been changing over the years, with people with dementia now not only being participants, but being involved as coresearchers. Participatory research raises questions about power, authority, and voice, and these questions infuse all aspects of the research process. Power includes how people with dementia are involved in decision-making and who is on the research team. Authority includes creating safe processes, creating safety, involving people with dementia in data collection, and using creative and arts-based approaches to research. Voice includes involving people with dementia in data analysis, acknowledging contributions, and finding ways for people with more advanced dementia to participate in research. Finally, we conclude with a discussion about how research is a relational endeavor.

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Acknowledgments

We wish to thank all of the people with dementia and researchers with whom we have had the privilege to work over the years. We acknowledge that we have learned much from these individuals over the years. Elaine Wiersma wishes to thank, in particular, Sherry Dupuis, Brenda Hounam, and Lisa Loiselle for their significant influence.

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Authors and Affiliations

  1. Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada

    Elaine C. Wiersma

  2. Social Sciences & Health, Durham University, Durham, UK

    Charlotte L. Clarke

  3. North West Dementia Working Group and Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada

    Bill Heibein

Authors
  1. Elaine C. Wiersma
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  2. Charlotte L. Clarke
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  3. Bill Heibein
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Corresponding author

Correspondence to Elaine C. Wiersma .

Editor information

Editors and Affiliations

  1. School of Health Sciences, Western Sydney University, Penrith, NSW, Australia

    Pranee Liamputtong

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Wiersma, E.C., Clarke, C.L., Heibein, B. (2021). Power, Authority, and Voice. In: Liamputtong, P. (eds) Handbook of Social Inclusion. Springer, Cham. https://doi.org/10.1007/978-3-030-48277-0_27-1

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  • DOI: https://doi.org/10.1007/978-3-030-48277-0_27-1

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