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  • 1.
    Falk Johansson, Marcus
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Social Work.
    For better and for worse, till death do us part: Support needs of persons caring for a co-habitant spouse or partner with dementia2024Doctoral thesis, comprehensive summary (Other academic)
    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.

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  • 2.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences.
    Jacobsen, Amanda
    Dalarna University, School of Education, Health and Social Studies, Care Sciences.
    Fridberg, Helena
    Dalarna University, School of Education, Health and Social Studies, Care Sciences.
    Vill vi tillbaka till långvårdens tidevarv?2020In: Socialpolitik, ISSN 1104-6376, article id 2020-06-05Article in journal (Other (popular science, discussion, etc.))
  • 3.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences. Nationella Forskarskolan om Äldre och Hälsa (SWEAH).
    Marmstål Hammar, Lena
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Mälardalens Högskola.
    Summer Meranius, Martina
    Mälardalens högskola.
    Vem tar över anhörigas insatser för äldre?2020In: Socialpolitik, ISSN 1104-6376, article id 2020-05-05Article in journal (Other (popular science, discussion, etc.))
  • 4.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences. Nationella Forskarskolan om Åldrande och Hälsa (SWEAH).
    Marmstål Hammar, Lena
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Summer Meranius, Martina
    Mälardalens Högskola .
    Viktigt att anhörigvårdarna får stöd efter unika behov2019In: Dagens Samhälle, ISSN ISSN 1652-6511Article in journal (Other (popular science, discussion, etc.))
  • 5.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences.
    McKee, Kevin
    Dalarna University, School of Health and Welfare, Social Work.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work.
    Summer Meranius, Martina
    Mälardalens Högskola.
    Williams, Christine L.
    Marmstål Hammar, Lena
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Mälardalen University.
    Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons With Dementia in Sweden2021In: Family Caregiving and Persons with Dementia, 2021, Vol. 5, p. 154-Conference paper (Refereed)
    Abstract [en]

    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.

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  • 6.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences.
    McKee, Kevin
    Dalarna University, School of Health and Welfare, Social Work.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work. Aging Research Center, Karolinska Institutet & Stockholm University.
    Summer Meranius, Martina
    Mälardalens Högskola .
    Williams, Christine L.
    Marmstål Hammar, Lena
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Mälardalens universitet; Karolinska institutet.
    Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden2022In: 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)
    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.

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  • 7.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. The Swedish National Graduate School for Competitive Science on Ageing and Health.
    McKee, Kevin
    Dalarna University, School of Health and Welfare, Social Work.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work.
    Williams, Christine L.
    Florida Atlantic University Christine E Lynn College of Nursing.
    Martina, Summer Meranius
    Mälardalens Högskola.
    Marmstål Hammar, Lena
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Spouse’s supported and unsupported care of persons with dementia: Home care and the informal caregiver’s perspective2021Conference paper (Refereed)
    Abstract [en]

    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.

  • 8.
    Falk Johansson, Marcus
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences.
    McKee, Kevin
    Dalarna University, School of Health and Welfare, Social Work.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work. Karolinska Institutet; Stockholm University.
    Williams, Christine L.
    Summer Meranius, Martina
    Hanson, Elizabeth
    Magnusson, Lennart
    Ekman, Björn
    Marmstål Hammar, Lena
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Mälardalen University, Västerås; Karolinska Institutet, Huddinge.
    A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data2021In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 21, article id 338Article in journal (Refereed)
    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.

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  • 9.
    Marmstål Hammar, Lena
    et al.
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Mälardalens Högskola.
    Falk Johansson, Marcus
    Dalarna University, School of Health and Welfare, Care Sciences.
    Dahlberg, Lena
    Dalarna University, School of Health and Welfare, Social Work.
    McKee, Kevin
    Dalarna University, School of Health and Welfare, Social Work.
    Summer Meranius, Martina
    Mälardalens Högskola.
    Exhausted and trapped in isolation. Caring for a spouse with dementia during the Covid-19 pandemic2021In: Family Caregiving (HS Poster), 2021, p. 800-801Conference paper (Refereed)
    Abstract [en]

    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.

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1 - 9 of 9
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