Are spousal carers' perceptions of continuity and discontinuity within the relationship influenced by the symptoms of dementia?

Meryl A Lewis,Gerard A Riley

doi:10.1177/1471301221994311

Abstract

Some spousal carers experience their current relationship with the person with dementia as a continuation of the loving relationship they shared prior to the onset of dementia. For others, the experience is one of discontinuity; the prior relationship is lost and replaced with a different kind of relationship. The aim of this study was to investigate whether these differences are associated with particular symptoms of dementia. Thirty-five spousal carers completed the Birmingham Relationship Continuity Measure, the Revised Memory and Behavior Checklist (providing scores relating to cognitive decline, depression and challenging interpersonal behaviour), the Communicative Effectiveness Index and the Bristol Activities of Daily Living Scale. Experiencing discontinuity in the relationship was significantly correlated with communication difficulties, challenging interpersonal behaviour and the need for assistance in activities of daily living, but not with cognitive decline or depression. In a multiple regression, only the measures of challenging interpersonal behaviour and activities of daily living made significant unique contributions to the variance in continuity/discontinuity scores. Discontinuity is associated with reduced psychological well-being for the spousal carer and the provision of less person-centred care. Understanding which symptoms are more likely to lead to discontinuity allows the identification of those at risk of these experiences. Those at risk may require support to enable them to make sense of, and adjust to, certain symptoms of dementia in a way that has a less negative impact on their relationship.

Highlights

Qualitative research involving partners/spouses who are providing care for someone with dementia has revealed considerable individual variation in how they experience their relationship
The current relationship represents a continuation of the loving pre-dementia relationship, but others experience radical discontinuity – the pre-dementia relationship has been lost and replaced with something very different (Boylstein & Hayes, 2012; Chesla et al, 1994; Evans & Lee, 2014; Kaplan, 2001; Lindauer & Harvath, 2015; Quinn et al, 2015; Walters et al, 2010)
In her qualitative study, Kaplan (2001) described a number of couple types differentiated by the degree of continuity between the past and current relationship, ranging from the ‘till death do us parts’ to ‘unmarried marrieds’

Summary

Introduction

Qualitative research involving partners/spouses who are providing care for someone with dementia has revealed considerable individual variation in how they experience their relationship. The current relationship represents a continuation of the loving pre-dementia relationship, but others experience radical discontinuity – the pre-dementia relationship has been lost and replaced with something very different (Boylstein & Hayes, 2012; Chesla et al, 1994; Evans & Lee, 2014; Kaplan, 2001; Lindauer & Harvath, 2015; Quinn et al, 2015; Walters et al, 2010) In her qualitative study, Kaplan (2001) described a number of couple types differentiated by the degree of continuity between the past and current relationship, ranging from the ‘till death do us parts’ (in which the sense of continuity is at its strongest) to ‘unmarried marrieds’ (in which the carer views themselves as being married in name only, and the pre-dementia relationship has been lost completely). Despite the changes and an acknowledgement of them, the essential core of a loving relationship persists, and the relationship is not experienced as being radically changed

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