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

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

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Abstract

BACKGROUND AND OBJECTIVES: A dementia diagnosis can affect 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 hr of observation, and researcher field notes. 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 subthemes 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 from 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 postdiagnosis 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.

Original languageEnglish
Pages (from-to)1320–1329
Number of pages10
JournalThe Gerontologist
Volume63
Issue number8
Early online date4 Mar 2023
DOIs
Publication statusPublished - Oct 2023

Keywords

  • Cognitive impairment
  • Ontology
  • Personhood
  • Social interaction
  • Social presence

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