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Bedlam or bliss? Recognising the emotional self-experience of people with moderate to advanced dementia in residential and nursing care

Beatrice Godwin (University of Bath, Bath, UK)
Fiona Poland (University of East Anglia, Norwich, UK)

Quality in Ageing and Older Adults

ISSN: 1471-7794

Article publication date: 14 December 2015

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Abstract

Purpose

The purpose of this paper is to examine the self-experience of people with moderate to advanced dementia. While people with dementia are widely assumed to lose their sense of self, emotions are preserved long into dementia and some can still discuss their lives, enabling exploration of respondents’ own self-conceptualisation of experience.

Design/methodology/approach

Ten people, purposively sampled, living in long-term residential or nursing care. A mixed methods design with Interpretative Phenomenological Analysis approach used semi-structured empathetic interviews to explore their experience and continuing goals, using supplementary information from family and others to contextualise core data. Data analysis identified emerging themes and superordinate concepts.

Findings

Sustained well-being and resistant ill-being emerged as major themes. Findings demonstrated continuity in sense of self, moral awareness and diversity of emotional reactions to living with dementia, associated with their emotional capital.

Research limitations/implications

The sample was small and limited to well- and moderately funded care homes. How to provide such support in less-well-funded homes needs further research as do reasons for resistant ill-being in advanced dementia.

Practical implications

Findings suggest care provision for people with advanced dementia which acknowledges individual feelings may support their sustained well-being. Psychological assessments should take closer account of multiple factors in individuals’ situations, including their emotional capital.

Social implications

Findings suggest everyday care of people with advanced dementia, may sustain their sense of self, well-being and emotional capital.

Originality/value

By empathically facilitating in-depth expression of individuals’ feelings and views, this research illuminates the personal self-experience of advanced dementia, hitherto little explored.

Keywords

Acknowledgements

The authors are most grateful to Rik Cheston, Marion Glaser, Malcolm Johnson, Justin Rogers, Hilary Waters and Barbara Teeter, for their expert advice, support and encouragement. The authors hearfelt thanks also to the residents, staff and managers for their time and for sharing their lives for this study.

Citation

Godwin, B. and Poland, F. (2015), "Bedlam or bliss? Recognising the emotional self-experience of people with moderate to advanced dementia in residential and nursing care", Quality in Ageing and Older Adults, Vol. 16 No. 4, pp. 235-248. https://doi.org/10.1108/QAOA-08-2015-0038

Publisher

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Emerald Group Publishing Limited

Copyright © 2015, Emerald Group Publishing Limited

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