Maintaining Social Connections in Dementia: A Qualitative Synthesis.

Linda Birt,Phuong Leung,Rebecca Griffiths,Georgina Charlesworth,Paul Higgs,Martin Orrell,Fiona Poland

doi:10.1177/1049732319874782

Abstract

The clinical symptoms of dementia include difficulty with speech, poor short-term memory, and changes in behavior. These symptoms can affect how the person with dementia understands and performs in social interactions. This qualitative review investigated how people with mild to moderate dementia managed social connections. A systematic search of social science databases retrieved 13 articles; data were synthesized using thematic analysis. Results established the work undertaken by people with dementia to maintain and present a social persona seen as socially acceptable. Interpretations are contextualized within Goffman and Sabat's theories on "self." People with dementia were agentic in impression management: undertaking work to maintain recognized social roles, while being aware of when their illness led to others discrediting them. Wider recognition of strategies used to maintain a social self could inform interventions designed to increase capability and confidence in co-managing social connections following dementia diagnosis.

Highlights

The stigma associated with the label of dementia may limit opportunities for people to retain and build their social connections
3403 articles were screened and reviewed by titles or abstracts to check for relevance to the research question. 3331 articles were excluded for the following reasons: non-empirical research, not reporting on dementia, study of dementia in long-term or residential care settings, aspect of dementia not relevant to research question, and reports of pharmaceutical treatment and drug trials
By synthesizing multiple studies using the theoretical lens of symbolic interactionism, and drawing on the works of Goffman and Sabat, we provide detailed insights into the agentic work people with dementia undertake in co-constructing social connections

Summary

Introduction

The stigma associated with the label of dementia may limit opportunities for people to retain and build their social connections. Language that situates the person with dementia as a victim or as suffering ‘a living death’ creates metaphorical and sometimes physical gulfs between ‘them’ and ‘us’ (Alzheimer Society, 2013; Zeilig, 2014). Such narratives of despair and deficit position the person with dementia as one who might not be able to ‘perform’ in social situations in culturally expected ways. Stigmatizing attitudes and behaviors may be reinforced when cognitive symptoms of dementia become evident in social interactions Symptoms such as memory loss, difficulties in recalling names and recent events, or appearing apathetic and behaving in challenging ways, can mark a person out as different making them more likely to be excluded from social roles and activities (Batsch & Mittelman, 2012). Fear of making mistakes in public can lead to the person with dementia withdrawing from social activities (Roland & Chappell, 2015)

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