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

Birt, Linda; Charlesworth, Georgina; Moniz Cook, Esme; Leung, Phuong; Higgs, Paul; Orrell, Martin; Poland, Fiona; (2023) 'The dynamic nature of being a person': An ethnographic study of people living with dementia in their communities. Gerontologist , 63 (8) pp. 1320-1329. 10.1093/geront/gnad022. Green open access

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Abstract

BACKGROUND AND OBJECTIVES: 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 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' exhibited 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 enabling them to have a continued social presence.

Type: Article
Title: 'The dynamic nature of being a person': An ethnographic study of people living with dementia in their communities
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1093/geront/gnad022
Publisher version: https://doi.org/10.1093/geront/gnad022
Language: English
Additional information: Copyright © The Author(s) 2023. 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.
Keywords: Cognitive impairment, ontology, personhood, social interaction, social presence
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry > Mental Health of Older People
URI: https://discovery.ucl.ac.uk/id/eprint/10166178
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