What is intended by the term participation and what does it mean to people living with dementia? A conceptual overview and directions for future research

Wolverson, Emma; Smith, Sarah Kate; Mountain, Gail

doi:10.3389/fresc.2022.952722

Authors

Dr Emma Wolverson E.Wolverson@hull.ac.uk
Senior Lecturer Ageing and Dementia. Research Lead for Dementia UK.

Sarah Kate Smith

Gail Mountain

Abstract

Policy continues to emphasise the importance of wellbeing in dementia. However, there is a vital need for psychosocial interventions that can promote positive outcomes to enhance “living well with dementia”. Our developing understanding of what people living with dementia report as being important to them, has resulted in new interpretations of what constitutes wellbeing including constructs such as “growth”, “purpose” and “participation”. These exciting and important constructs are not currently captured by outcome measures within dementia research. This limits our
understanding of the value of psychosocial interventions. This paper explores the concept of participation and how continued participation in social life and make a difference to the rights of people living with dementia as citizens. We will firstly consider why participation is important for how we might measure outcomes in dementia research and care. Secondly, we will explore how we might measure participation. Finally, we will consider the value of participation as a psychosocial outcome in future research.

Citation

Wolverson, E., Smith, S. K., & Mountain, G. (2022). What is intended by the term participation and what does it mean to people living with dementia? A conceptual overview and directions for future research. Frontiers in Rehabilitation Sciences, 3, Article 952722. https://doi.org/10.3389/fresc.2022.952722

Journal Article Type	Article
Acceptance Date	Jul 29, 2022
Online Publication Date	Aug 11, 2022
Publication Date	Aug 11, 2022
Deposit Date	Aug 11, 2022
Publicly Available Date	Oct 27, 2022
Journal	Frontiers in Rehabilitation Sciences
Publisher	Frontiers Media
Peer Reviewed	Peer Reviewed
Volume	3
Article Number	952722
DOI	https://doi.org/10.3389/fresc.2022.952722
Keywords	Dementia; Participation; Outcome measurement; Citizenship; Human rights
Public URL	https://hull-repository.worktribe.com/output/4051265

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Copyright Statement
© 2022 Smith, Wolverson and Mountain. 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) and the copyright owner(s) 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.