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.
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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.
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