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Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

Published online by Cambridge University Press:  26 January 2017

Kirsty M. Patterson Open the ORCID record for Kirsty M. Patterson [Opens in a new window] ,
Chris Clarke ,
Emma L. Wolverson  and
Esme D. Moniz-Cook
Kirsty M. Patterson*
Affiliation:
Department of Clinical Psychology for Older People, The Hull Memory Clinic, Hull, UK
Chris Clarke
Affiliation:
Department of Psychological Health and Wellbeing, University of Hull, Hull, UK
Emma L. Wolverson
Affiliation:
Department of Psychological Health and Wellbeing, University of Hull, Hull, UK
Esme D. Moniz-Cook
Affiliation:
Faculty of Health and Social Care, University of Hull, Hull, UK
*
Correspondence should be addressed to: Kirsty M. Patterson, Department of Clinical Psychology for Older People, The Hull Memory Clinic, 39-41 Coltman Street, Hull HU3 2SG, UK. Phone: +44 1482 336618. Email: [email protected].
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Abstract

Background:

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts.

Method:

A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have.

Results:

Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia.

Conclusion:

Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia.

Keywords

dementiasocialrelationshipssubjectiveexperiencequalitativereviewsynthesis
Type
Review Article
Information
International Psychogeriatrics , Volume 30 , Special Issue 6: Social Health , June 2018 , pp. 791 - 805
Copyright
Copyright © International Psychogeriatric Association 2017 

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