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For better and for worse, till death do us part: Support needs of persons caring for a co-habitant spouse or partner with dementia
Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Social Work.ORCID iD: 0000-0002-8480-190x
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
Abstract [en]

Background: Caring for a partner with dementia is typically stressful and challenging. Such carers can become overwhelmed by their responsibilities, neglecting their personal needs as well as their need for support as a carer. Receipt of support is low among spouse carers, while the support received may not be appropriate for their needs. More research is required to develop effective support for this important group of carers. 

Overall aim: To explore the life- and caring situation of spouses caring for a partner with dementia and to increase the understanding of their needs and experiences of support.  

Methods: This thesis consists of four papers (I-IV): I, Analysis of data on informal carers of persons with dementia (n=330) from a cross-sectional survey of a stratified random probability sample of adults in Sweden (N=30 009); II and III, a cross-sectional survey of a convenience sample of people aged 65 years or older caring for a partner with dementia (N=175). Hierarchal regression models explored positive and negative aspects of caring (II), and principal component analysis examined carers’ perceptions of support (III); IV, a thematic analysis of semi-structured telephone interviews with 24 spouse carers, exploring their caring experiences. 

Results: Compared to other carers, spouses of persons with dementia received less support from family or local authorities, while experiencing more negative impact from caring (I). Negative impact from, and positive value of, caring among spouses, were associated with different aspects of their situation (II). Support was perceived as important, yet spouses may not perceive support to themselves as more important than support to their partner (III). Spouse carers experienced a loss of self and felt confined in their situation, finding it hard to distinguish between their needs and those of their partner (IV). 

Conclusion: Compared to other carers, spouses are more exposed to the negative aspects of caring, while being less supported. Support to spouse carers should focus on strengthening the positive aspects of caring to mitigate the negative aspects. As a spouse’s needs are conditioned by their partner’s, support should focus on spouses’ personal needs and their partners’ care needs.

Place, publisher, year, edition, pages
Falun: Dalarna University, 2024.
Series
Dalarna Doctoral Dissertations ; 30
Keywords [en]
Informal care, spouse, dementia, support, needs, experiences
National Category
Nursing
Identifiers
URN: urn:nbn:se:du-47671ISBN: 978-91-88679-58-1 (print)OAI: oai:DiVA.org:du-47671DiVA, id: diva2:1824173
Public defence
2024-04-19, lecture hall 105 (Fö 5), campus Falun, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2024-03-15 Created: 2024-01-04 Last updated: 2024-03-15Bibliographically approved
List of papers
1. A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data
Open this publication in new window or tab >>A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data
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2021 (English)In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 21, article id 338Article in journal (Refereed) Published
Abstract [en]

Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

National Category
Nursing
Research subject
Health and Welfare, Identifiering och utveckling av stöd för att möta behov hos personer som vårdar en sammanboende partner med demens
Identifiers
urn:nbn:se:du-37261 (URN)10.1186/s12877-021-02264-0 (DOI)000660608300001 ()34078292 (PubMedID)2-s2.0-85107220762 (Scopus ID)
Available from: 2021-06-03 Created: 2021-06-03 Last updated: 2024-02-23Bibliographically approved
2. Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
Open this publication in new window or tab >>Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
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2022 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 3, article id 1788Article in journal (Refereed) Published
Abstract [en]

(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.

Keywords
caregiving; dementia; negative impact; older adults; positive value; relationship; spouse carers; support
National Category
Gerontology, specialising in Medical and Health Sciences
Research subject
Health and Welfare, Identifiering och utveckling av stöd för att möta behov hos personer som vårdar en sammanboende partner med demens
Identifiers
urn:nbn:se:du-39392 (URN)10.3390/ijerph19031788 (DOI)000757392000001 ()35162811 (PubMedID)2-s2.0-85123958362 (Scopus ID)
Funder
The Kamprad Family Foundation, 20180191
Available from: 2022-02-07 Created: 2022-02-07 Last updated: 2024-02-23Bibliographically approved

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Falk Johansson, Marcus

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