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

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.