A1 Journal article (refereed)
Participation of persons living with dementia in research : A means to address epistemic injustice (2024)

Halonen, U., Aaltonen, M., Van Aerschot, L., & Pirhonen, J. (2024). Participation of persons living with dementia in research : A means to address epistemic injustice. Dementia, OnlineFirst. https://doi.org/10.1177/14713012241299015

JYU authors or editors

Publication details

All authors or editors: Halonen, Ulla; Aaltonen, Mari; Van Aerschot, Lina; Pirhonen, Jari

Journal or series: Dementia

ISSN: 1471-3012

eISSN: 1741-2684

Publication year: 2024

Publication date: 07/11/2024

Volume: OnlineFirst

Publisher: SAGE Publications

Publication country: United Kingdom

Publication language: English

DOI: https://doi.org/10.1177/14713012241299015

Publication open access: Openly available

Publication channel open access: Partially open access channel

Publication is parallel published (JYX): https://jyx.jyu.fi/handle/123456789/98261

Abstract

Epistemic injustice refers to wronging or mistreating individuals in terms of their capacity as knowers, based on prejudices or negative attitudes. Excluding people with dementia from research is a form of epistemic injustice. In this article, we discuss epistemic injustice associated with data collection processes and the participation of people with dementia in scientific research. The challenges of participation that we discuss pertain to the role of gatekeepers and ethical research perspectives. The arguments presented are based on previous research, experiences from our current project, and critical self-assessment regarding the latter. The aim is to shed light on what enables or prevents people living with dementia from participating in research, and how this is connected to epistemic injustice. It is known that prejudices related to dementia affect both researchers and people living with dementia: the former tend to exclude people with dementia, and the latter may practice self-silencing due to dementia-related stigma. In addition to these individual issues, we argue that epistemic injustice occurs at a structural level, where a major role is played by gatekeepers and research ethics panels. As close family members, health officials, and dementia-related associations are the main gatekeepers, their attitudes and perceptions are highlighted. In terms of ethical issues, the concept of informed consent needs to be elaborated. If the research is not expected to harm participants and may contribute to improving the lives of those with dementia, the perspective should be shifted from informed consent to ongoing consent assessment. While acknowledging the features and symptoms of dementia, researchers should be more courageous, trust in the good cause, and enable persons living with dementia to participate in research that concerns them. This is the only way for researchers to genuinely understand the social world, experiences, and needs of those with dementia and to address epistemic injustice.

Keywords: dementia; participation; research; injustice

Free keywords: dementia; participation; research; epistemic injustice; people with dementia

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Ministry reporting: Yes

VIRTA submission year: 2024

Preliminary JUFO rating: 1