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Introduction: Enhancing Quality of Life for Individuals with Stroke (EQL-stroke) is an international, collaborative multiphase project aiming to strengthen supported self-management for older adults recovering from stroke at home in Sweden, Latvia and the Netherlands. Existing poststroke pathways may provide insufficient support for self-management during the transition from hospital to home, and there is limited evidence on interventions that integrate social networks and everyday environmental context.

Methods and analysis: EQL-stroke uses a participatory, multimethod design across three phases. Phase I generates knowledge through policy review, qualitative interviews and people-place mapping (~25 participants per country) and includes cross-cultural adaptation of the Collective Efficacy of Networks Scale. Phase II co-designs and specifies a tailored social network-informed supported self-management intervention (the Network-Based Intervention), including core components and principles for local adaptation (~15 participants per country). Phase III will recruit approximately 20-40 stroke survivors for a single-arm pilot feasibility study with an 8-week follow-up and embedded process evaluation to assess feasibility, acceptability and fidelity in routine practice.

Ethics and dissemination: Ethical approval has been obtained from the Swedish Ethical Review Authority (reg. no. 2025-00083-01), the Rīgas Stradiņa Universitāte Research Ethical Committee (reg. no. Rīgas Stradiņa Universitāte Research Ethical Committee) and the Research Ethics Committee of the Faculty of Spatial Sciences, University of Groningen (reg. no. 2025-07). Findings will be disseminated through peer-reviewed publications, stakeholder engagement activities and patient/public channels.

Purpose Spouses of persons with dementia often take on caring responsibilities that can be overwhelming and negatively affect their well-being. To support the development of effective services and promote carer well-being, we aim to describe carer experiences and needs in everyday life.

Methods Semi-structured phone interviews were conducted with a convenience sample of 24 spouses caring for a partner with dementia in Sweden. The interviews explored experiences of caring for a partner with dementia. Interviews were analyzed with thematic analysis.

Results The analysis generated two themes: “Being consumed by caring” and “Longing to be seen and feel supported”. The first theme showed that spouse carers experience a transition from spouse to carer and feel confined in their new situation. The second showed that to be supported, spouse carers need to feel acknowledged in their situation, and formal care must meet their partner's needs, as carers' needs are enmeshed with those of their partners.

Conclusion Spouse carers of persons with dementia often feel trapped by caring responsibilities. To feel supported, they need to be acknowledged both as individuals and as part of a couple. Health and social care professionals should focus on maintaining spouses' sense of self and adopt a couple-centred approach.

INTRODUCTION: As care and rehabilitation poststroke are increasingly moving into persons' home environment, the importance of support from social networks in self-management and rehabilitation has emerged as an important topic for research and practice. While there are instruments used to assess social support and collective efficacy, a clearer scope of the availability and quality of these instruments is needed. This clarification will enable the development of interventions integrating social network perspectives in poststroke rehabilitation.

METHODS AND ANALYSIS: To assess the availability and quality of instruments assessing social support and collective efficacy, a scoping review will be conducted and reported following the Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews guidelines (PRISMA-ScR). Literature searches conducted between 14 November 2024 and 15 November 2024 in the CINAHL and PubMed/Medline databases resulted in 4631 articles potentially eligible. After removing duplicates, 4121 articles' titles and abstracts were initially screened. Full-text screening, searches of reference lists and data extraction started in June 2025. Starting August 2025, two reviewers will assess the full texts against the inclusion criteria in Covidence using a coding template. Identified instruments will be appraised following the COSMIN (Consensus-based Standards for the selection of health Measurement INstruments guidelines) and analysed using a narrative descriptive method. Results will be reported in February 2026 according to PRISMA-ScR guidelines.

ETHICS AND DISSEMINATION: Ethical approval is not required for this scoping review, as it does not involve primary data. However, this review follows established ethical guidelines and best practices, and included studies will be reviewed to ensure that they received ethical approval and included informed consent. Results from the review will be disseminated through an article in a scientific journal, at relevant conferences and surmised to stroke organisations. A policy brief will be developed for health and social care professionals and policy makers.

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.

Informal caregivers play a crucial role in the care of individuals with dementia, and their caregiving may significantly impact their own health and well-being. This cross-sectional survey study focuses on the perceived importance of various types and characteristics of formal support in a convenience sample of caregivers aged 65 years or older (N = 175) caring for a spouse with dementia. Participants completed a questionnaire containing 17 items describing different types of support and 12 items describing different characteristics of support, rating their importance. The questionnaire also contained questions on various caregiving-related factors. Principle components analysis (PCA) was carried out on the importance ratings, separately, on the types of support items and the characteristics of support items. Each PCA produced three components. For types of support, they were Proficiency and Opportunity, Supportive Structures, Flexible Counselling. For characteristics of support, they included Respectful and Competent, Timely Support, and Accessible and Acceptable. The three characteristics of the support components all had higher mean importance ratings than the three types of support components. The content of some components indicated that while spouse caregivers rate support for their caregiving needs as important, they may not always differentiate their own needs from those of their partner with dementia. The negative impact of caregiving was the factor most strongly and consistently associated with the components' importance ratings. This study emphasizes the need for health and social care providers to address the unique needs of spouse caregivers while simultaneously ensuring the delivery of quality care for individuals with dementia.

(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.

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.

Even before the Covid-19 pandemic, spouse carers of persons with dementia (PwDs) found their care responsibilities overwhelming and had little time to focus on their own lives. To minimize the risk of being infected with Covid-19, older persons are recommended to self-isolate in their homes, while formal support such as respite care and day care centers are withdrawn. This study involved semi-structured interviews with 24 spouse carers of community-living PwDs, with the aim of describing their situation during the pandemic. The interviews were analyzed with qualitative content analysis. Results revealed that they commonly declined help because of the perceived risk of their spouse being infected with Covid-19 and thus also possibly causing their death. They described feelings of being trapped in their situation, as they experienced having no choice than take all responsibility for the care of their partner themselves, with cost of being unable to take necessary breaks. This was described as making an already strained situation almost unbearable, which led to conflicts with their partner. However, the spouses also described positive aspects due to strategic changes in health and social care provision to prevent the spread of the virus, such as greater staff continuity in home care services, and patient transportation service. These made the PwD less stressed and influenced their everyday life positively. It could be concluded that the extent burden during the Covid-19 pandemic calls for extensive development of tailored support to better tackle the rapid changes that can occur in a society.

As welfare providers struggle to meet the care needs of persons with dementia (PwDs), most of their needs are being met by a family carers, most often a spouse. The situation for spouse carers is unique, e.g., with grief, loneliness and loss of intimacy combining with stress and poor health. Research is needed to develop adequate support for spouse carers based on evidence of what influences negative and positive outcomes of care. The present study investigated psychosocial correlates of spouse carers’ (i) negative impact and (ii) positive value of caring. Data from a cross-sectional survey of 165 spouse carers community-resident in Sweden was analysed in two hierarchical regression models to predict negative impact and positive value of caring. Results found that negative impact and positive value were explained by different variables, significant predictors for negative impact included carer stress, health, and emotional loneliness, and change in intimacy with the care-recipient, while positive value was predicted by mutuality, change in closeness to the care-recipient and quality of support. Negative impact and positive value shared variance of only 17.2%. Thus, negative impact and positive value represent different aspects of the carer situation. Consequently, support needs to target several aspects in carers’ life, aiming to; facilitate for spouses to manage PwD’s impairment, increase emotional support while also strengthening the relationship between carer and PwD to reduce negative impact while increasing positive value.

Introduction. Caring for a person with dementia (PWD) can negatively affect the quality of life of informal carers, and research suggests spouse carers, often being older, are particularly vulnerable and requiring of support. Yet the formal support offered is rarely tailored to meet the needs of spouse carers of PWDs. The aim of the present study was to compare spouse carers to other carers of PWDs on a range of factors, as a foundation for a better understanding of their support needs. 

Material and methods. Cross-sectional survey. In late 2018 a random stratified sample was taken of the Swedish population aged 18 and older. Of 30,009 people contacted, 11,168 completed and returned a questionnaire or completed a web-based version, a response rate of 37.3%. The questionnaire contained questions on whether the respondent was an informal carer for another person, the extent of care provided, contact with and support received from formal services, and impacts of care.

Results. Of the respondents, 378 (3.38%) were carers of PWDs, of whom 107 (28.3%) were spouse carers. Spouse carers compared to other carers of PWD provide care more intenselyand are more informed on their right to support from local authorities. While more often being offered formal support in their carer role, they are less supported in providing care and report a higher negative impact (for all p<.05). 

Conclusions. Formal support is offered to spouse carers in their carer role, but might not be tailored to their specific needs of support.