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The dynamic nature of being a person’: an ethnographic study of people living with dementia in their communities

Moniz-Cook, Esme; Birt, Linda; Charlesworth, Georgina; Leung, Phuong; Higgs, Paul; Orrell, Martin; Poland, Fiona

Authors

Profile image of Esme Moniz-Cook

Professor Esme Moniz-Cook E.D.Moniz-Cook@hull.ac.uk
Emeritus Professor of Clinical Psychology of Ageing and Dementia Care Research / Dementia Research Work Group Lead

Linda Birt

Georgina Charlesworth

Phuong Leung

Paul Higgs

Martin Orrell

Fiona Poland



Abstract

Background : A dementia diagnosis can impact on social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities.
Research design and methods : Focused ethnography informed by Spradley’s approach to data collection and analysis. Observations undertaken in community spaces.
Results : Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hours of observation, and researcher fieldnotes. The overarching theme ‘The dynamic nature of being a person’ encapsulates participants’ experiences in negotiating to attain and sustain an acknowledged place in their communities. Two sub-themes characterized contexts and actions: 1 ‘Being me - not dementia’: participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. 2 ‘Resisting or acquiescing to ‘being absent in place’’: Participants were often able to resist being absent to the gaze of others, but some social structures and behaviors led to a person being ‘in place’, yet not having their presence confirmed.
Discussion and implications: People living with dementia can actively draw on personal attributes, familiar rituals, objects and social roles to continue to present themselves as social beings. Identifying how post-diagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia to enable them to have a continued social presence.

Citation

Moniz-Cook, E., Birt, L., Charlesworth, G., Leung, P., Higgs, P., Orrell, M., & Poland, F. (2023). The dynamic nature of being a person’: an ethnographic study of people living with dementia in their communities. Gerontologist, 63(8), 1320-1329. https://doi.org/10.1093/geront/gnad022

Journal Article Type Article
Acceptance Date Feb 8, 2023
Online Publication Date Mar 4, 2023
Publication Date Oct 1, 2023
Deposit Date Feb 11, 2023
Publicly Available Date Sep 5, 2023
Journal The Gerontologist
Print ISSN 0016-9013
Electronic ISSN 1758-5341
Publisher Oxford University Press
Peer Reviewed Peer Reviewed
Volume 63
Issue 8
Pages 1320-1329
DOI https://doi.org/10.1093/geront/gnad022
Keywords Social interaction; Cognitive impairment; Social presence; Personhood; Ontology
Public URL https://hull-repository.worktribe.com/output/4196033

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Publisher Licence URL
http://creativecommons.org/licenses/by/4.0

Copyright Statement
© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/),
which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.




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