Abstract
(1) Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2) Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4) Conclusions: Support to spouse carers of PwD should address the carer–care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.
Highlights
Most care and support for persons with dementia (PwDs) is informal, i.e., provided by family or friends, usually an adult child or a spouse [1]
This paper presents data from a cross-sectional survey of spouse carers of PwD in Sweden and explores factors associated with the positive value and negative impact of caregiving
Most spouse carers were married to their partner (91.0%) in a relationship that had lasted a mean of 48.6 years
Summary
Most care and support for persons with dementia (PwDs) is informal, i.e., provided by family or friends, usually an adult child or a spouse [1]. To effectively support spouse carers, it is important that the factors associated with both their negative and positive experiences of care are established to address the former and enhance the latter. This paper presents data from a cross-sectional survey of spouse carers of PwD in Sweden and explores factors associated with the positive value and negative impact of caregiving. In the behavioural section of BISID, the respondent is asked: “Does the person you care for behave in any of the following ways. The instrumental section of BISID states: “The following questions are about the amount of personal care the person you care for needs.
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