Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden

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.

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“…Informal caregiving can be a positive experience; however, negative consequences in terms of worse health, reduction, or termination of paid work and lower financial resources are common, especially among informal caregivers providing intensive care (Bastawrous et al 2015 ; Johansson et al 2022 ; Lilly et al 2007 ). Furthermore, women are at higher risk of experiencing these negative consequences than men, even when accounting for gender differences in caregiving (Szebehely et al 2014 ).…”

Effectiveness of interventions designed to mitigate the negative health outcomes of informal caregiving to older adults: an umbrella review of systematic reviews and meta-analyses

“…Informalisation of care has come with important concerns about the potential side effects of caregiving, and with growing interest from decision-makers and stakeholders in the effectiveness of existing support interventions to alleviate these negative consequences. The burden of informal care can be determined by various factors, such as the intensity of caregiving, care receivers’ dependency level, relationship with the care receiver, available social support from the community, and caregivers’ own health 7–10. Research findings on the health effects of caregiving have been mixed, with some studies reporting a positive association with health and longevity,11 while others reveal a myriad of adverse repercussions, such as increased mortality,12 poorer well-being,13 and worse physical and mental health outcomes in general 14.…”

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“…For example, spousal care relationships can be influenced by the quality of the spousal relationship before care partner–care‐recipient roles coming about. Johansson et al 11 suggest that for the positive value of care partner relationships to be enhanced and the negative impact reduced, different aspects of the relationship need to be recognised and addressed.…”