| 1. |
- Falk Johansson, Marcus, et al.
(författare)
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A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data
- 2021
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundBeing 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.MethodsThe study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7%) responded, of whom 330 (2.95%) were informal carers of a PwD.ResultsIn comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.ConclusionsSpouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.
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| 2. |
- Falk Johansson, Marcus
(författare)
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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
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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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| 3. |
- Falk Johansson, Marcus, et al.
(författare)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons With Dementia in Sweden
- 2021
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Ingår i: Family Caregiving and Persons with Dementia. - : Oxford University Press (OUP). ; , s. 154-
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Konferensbidrag (refereegranskat)abstract
- 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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| 4. |
- Falk Johansson, Marcus, et al.
(författare)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:3
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Tidskriftsartikel (refereegranskat)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 car-ers 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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| 5. |
- Falk Johansson, Marcus, et al.
(författare)
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Spouse’s supported and unsupported care of persons with dementia : Home care and the informal caregiver’s perspective
- 2021
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 6. |
- Kirvalidze, Mariam, et al.
(författare)
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Effectiveness of integrated person-centered interventions for older people's care : Review of Swedish experiences and experts' perspective
- 2024
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Ingår i: Journal of Internal Medicine. - : John Wiley & Sons. - 0954-6820 .- 1365-2796.
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Tidskriftsartikel (refereegranskat)abstract
- Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field. image
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| 7. |
- Marmstål Hammar, Lena, 1979-, et al.
(författare)
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Exhausted and trapped in isolation. Caring for a spouse with dementia during the Covid-19 pandemic
- 2021
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Ingår i: Family Caregiving (HS Poster). - : Oxford University Press (OUP). ; , s. 800-801
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Konferensbidrag (refereegranskat)abstract
- 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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| 8. |
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| 9. |
- Borg, Johan, et al.
(författare)
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Experiences of Assistive Products and Home Care among Older Clients with and without Dementia in Sweden
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 19:19, s. 12350-12350
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Tidskriftsartikel (refereegranskat)abstract
- The purpose was to compare selection, use and outcomes of assistive products among older home care clients with and without dementia in Sweden, and to explore the relations between the use of assistive products and perceptions of home care, loneliness and safety. Self-reported data from 89,811 home care clients aged 65 years or more, of whom 8.9% had dementia, were analysed using regression models. Excluding spectacles, 88.2% of them used assistive products. Respondents without dementia were more likely to use at least one assistive product but less likely to use assistive products for remembering. Respondents with dementia participated less in the selection of assistive products, used less assistive products, and benefited less from them. Users of assistive products were more likely to be anxious and bothered by loneliness, to feel unsafe at home with home care, to experience that their opinions and wishes regarding assistance were disregarded by home care personnel, and to be treated worse by home care personnel. The findings raise concerns about whether the needs for assistive products among home care clients with dementia are adequately provided for. They also indicate a need to strengthen a person-centred approach to providing home care to users of assistive products.
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| 10. |
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