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Giertz, L., Melin Emilsson, U. & Vingare, E.-L. (2019). Family caregivers and decision-making for older people with dementia. Journal of Social Welfare and Family Law, 41(3), 321-338
Open this publication in new window or tab >>Family caregivers and decision-making for older people with dementia
2019 (English)In: Journal of Social Welfare and Family Law, ISSN 0964-9069, E-ISSN 1469-9621, Vol. 41, no 3, p. 321-338Article in journal (Refereed) Published
Abstract [en]

This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual's autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual. Based on data from interviews with family caregivers living at home, decision-making through family caregivers is discussed and formal guardianship is also considered. Swedish legislation leaves individuals with dementia and family caregivers in a vacuum between self-determination and full autonomy with the ideal of citizenship emphasised and recognised in the Social Services Act on the one hand, and on the other, a strong need for support in everyday life and with decision-making.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2019
Keywords
Decision-making, dementia, family caregiver, social services, Sweden
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-88847 (URN)10.1080/09649069.2019.1627087 (DOI)000479303000005 ()
Available from: 2019-08-29 Created: 2019-08-29 Last updated: 2019-08-29Bibliographically approved
Lethin, C., Hallberg, I. R., Vingare, E.-L. & Giertz, L. (2019). Persons with Dementia Living at Home or in Nursing Homes in Nine Swedish Urban or Rural Municipalities. Healthcare, 7(2), 1-13, Article ID 80.
Open this publication in new window or tab >>Persons with Dementia Living at Home or in Nursing Homes in Nine Swedish Urban or Rural Municipalities
2019 (English)In: Healthcare, E-ISSN 2227-9032, Vol. 7, no 2, p. 1-13, article id 80Article in journal (Refereed) Published
Abstract [en]

The methodology from the RightTimePlaceCare study of dementia care was tested locally in terms of relevance, acceptability and attrition. Comparing persons with dementia (PwDs) receiving home care (HC) with PwDs living in nursing homes (NHs), in urban versus rural areas, regarding their health conditions and informal caregiver burden was also done. Standardized measurements regarding sociodemographic, and physical and mental health was used. Questions related to legal guardianship were added. Interviews were conducted with PwDs and their caregivers in HC (n = 88) and in NHs (n = 58). Bivariate and multivariate logistic regression analysis was used. The attrition rate was higher in HC. In the bivariate regression model, for HC and NH, living at home was significantly associated with more severe neuropsychiatric symptoms (p <= 0.001) and being cared by a spouse (p = 0.008). In NH, the informal caregivers were significantly younger (p = 0.003) and living in rural areas (p = 0.007) and more often in paid work (p <= 0.001). In the multivariate regression model, informal caregivers were significantly younger (p = 0.007) when caring for a PwD in an NH and caregiver burden was significantly higher in HC and in urban areas (p = 0.043). Legal guardianship was very low. Professionals should acknowledge that PwDs in HC have more behavioural problems and caregivers in urban areas report higher caregiver burden.

Place, publisher, year, edition, pages
MDPI, 2019
Keywords
dementia, dementia not otherwise specified, decision-making, healthcare, informal caregivers, informal caregiving, social services, quality of life
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-86992 (URN)10.3390/healthcare7020080 (DOI)000474936300028 ()31242681 (PubMedID)
Available from: 2019-07-25 Created: 2019-07-25 Last updated: 2019-07-25Bibliographically approved
Beijer, U., Vingare, E.-L., Eriksson, H. G. & Umb Carlsson, Õ. (2018). Are clear boundaries a prerequisite for well-functioning collaboration in home health care?: A mixed methods study. Scandinavian Journal of Caring Sciences, 32(1), 128-137
Open this publication in new window or tab >>Are clear boundaries a prerequisite for well-functioning collaboration in home health care?: A mixed methods study
2018 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 128-137Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to examine whether professional collaboration in home health care is associated with clear boundaries between principals' areas of responsibility and the professions areas of responsibility, respectively. Data were derived from a web-based survey that was carried out in one county in the middle of Sweden during spring 2013. Participants were health professionals and managers from the county council and from all the municipalities in the county. Both structured and open-ended questions were utilised. A total of 421 individuals (90% women) answered the structured questions, and 91 individuals (22% of the 421) answered the open-ended questions. Quantitative data were analysed with descriptive statistics methods, tests of independence and of correlation strength. Qualitative data were analysed with content analysis. The results from the structured questions showed that well-functioning collaboration was associated with clear boundaries between principals in the county overall, and for respondents in two of three parts of the county. Association between clear boundaries between professions and well-functioning collaboration was found in the county overall among the municipality population. However, in one part of the county, we did not find any correlations between well-functioning collaboration and clear boundaries between professions or principals, with the exception of home help services. The analysis of the open questions gave similar results as the quantitative analysis, illustrated within three themes: The significance of concepts, trust and interdependence, and collaboration as a means for well-being. The results indicate that, recently after an organisational change, clear boundaries between the principals' areas of responsibility and professions' area of responsibility respectively are necessary for effective cooperation between professionals. If the organisation and professionals have previous positive experience of colocated activities, clear boundaries do not share the same importance.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2018
Keywords
Boundaries; Collaboration; County Council; Home Health Care; Home Help Services; Municipality; Responsibilities
National Category
Social Sciences Interdisciplinary
Research subject
Health and Caring Sciences, Caring Science; Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-68876 (URN)10.1111/scs.12438 (DOI)000426524200012 ()28524383 (PubMedID)2-s2.0-85042556768 (Scopus ID)
Available from: 2017-11-21 Created: 2017-11-21 Last updated: 2019-08-29Bibliographically approved
Lethin, C., Giertz, L., Vingare, E.-L. & Hallberg, I. R. (2018). Dementia care and service systems - a mapping system tested in nine Swedish municipalities. BMC Health Services Research, 18, Article ID 778.
Open this publication in new window or tab >>Dementia care and service systems - a mapping system tested in nine Swedish municipalities
2018 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 18, article id 778Article in journal (Refereed) Published
Abstract [en]

BackgroundIn dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life.MethodsThe aim of this study was to further develop and test a mapping system, and adapt it to a local context. In addition, the aim was to assess availability and utilization of care activities as well as professional providers' educational level in nine municipalities under the categories of Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care. This cross-sectional study was conducted in April through May 2015. Data was derived from the health care and social service systems in nine rural and urban municipalities in two counties in Sweden. The mapping system covered seven categories with altogether 56 types of health care and social service activities.ResultsThe mapping system was found to be reliable with minor adaptations to the context mainly in terms of activities. Availability of care activities was common with low utilization regarding Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care and dementia trained staff was rare. Availability and utilization of care activities and professionals' educational level was higher concerning screening, the diagnostic procedures and treatment compared with outpatient care facilities, institutional care and palliative care.ConclusionsThe mapping system enables policy makers and professionals to assess and develop health care and social service systems, to be offered proactively and on equal terms to people with dementia and their informal caregivers throughout the course of the disease. The educational level of professionals providing care and services may reveal where, in the chain of care, dementia-specific education for professionals, needs to be developed.

Place, publisher, year, edition, pages
BioMed Central, 2018
Keywords
Dementia, Chain of care, Screening, Institutional care, Palliative care, Professional care providers, Education
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-78610 (URN)10.1186/s12913-018-3592-x (DOI)000447634000003 ()30326900 (PubMedID)2-s2.0-85054967224 (Scopus ID)
Available from: 2018-11-01 Created: 2018-11-01 Last updated: 2019-08-29Bibliographically approved
Vingare, E.-L., Giertz, L. & Melin Emilsson, U. (2018). Do national guidelines have any impact?: a comparison of nine Swedish municipalities and the Dementia care. Nordic Social Work Research, 1-15
Open this publication in new window or tab >>Do national guidelines have any impact?: a comparison of nine Swedish municipalities and the Dementia care
2018 (English)In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, p. 1-15Article in journal (Refereed) Epub ahead of print
Abstract [en]

Living with dementia, care and social care systems The aim of this article is to find out what impact national guidelines have on municipality dementia care. Furthermore, the aim is to compare organization of social care to the local adaptation of nationally invoked values. This article is connected to Living with dementia, care and social care systems , an interdisciplinary project between Health Sciences at Lund University and Social Sciences at Linnaeus University. The national guidelines for care and services to people with dementia recommend specialized units, and professional specialization in dementia care. Based on values of self-determination, integrity, accessibility, equity, rights and safety, they are meant to guide the dementia care in the community. In this article the organization of care is compared to how nationally invoked values are discussed in local policy documents in nine municipalities. These two aspects of dementia care are central to the national guidelines. The organization of care was explored by a mapping study of 19 municipality services. Type of organization was determined based on when, throughout the progression of the disease, services were made available, the existence of specialized dementia care units, and level of professional specialization. Information about values in local policies was examined by utilizing policy as discourse analysis of local policy documents. Four types of relationships between organization and value implementation were found. Eight out of nine municipalities failed to adapt to both aspects of the national guidelines.

Place, publisher, year, edition, pages
Taylor & Francis, 2018
Keywords
Article, Community Care, Dementia, National Guidelines, Organization, Specialization, Values
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-78879 (URN)10.1080/2156857X.2018.1542335 (DOI)
Funder
The Kamprad Family Foundation, 2013121
Available from: 2018-11-19 Created: 2018-11-19 Last updated: 2018-12-04
Vingare, E.-L. & Umb Carlsson, Ö. (2017). Adaptation to care dependency in community care. Quality in Ageing and Older Adults, 18(4), 254-264
Open this publication in new window or tab >>Adaptation to care dependency in community care
2017 (English)In: Quality in Ageing and Older Adults, ISSN 2044-1827, Vol. 18, no 4, p. 254-264Article in journal (Refereed) Published
Abstract [en]

Purpose The purpose of this paper is to explore the lived experiences of adapting to care dependency among adults receiving health and social care in ordinary housing. Design/methodology/approach This was done by conducting a phenomenological study by interviewing ten adults, receiving home care services in ordinary housing. Findings Participants not only adapted by becoming a ?good patient? but they had four strategies they used: sociability, distance, competence and compliance, contributing to a sense of dignity and personal safety. Research limitations/implications Further research is needed regarding how to preserve quality of care with adults with various ways of adapting to care dependency. Practical implications The relationship between professionals and adults in care dependency is a dynamic process where a need for understanding different modes of adaptation is vital. Good treatment and quality care may be different things to different adults, depending on what aspects of the process of adaptation concern them the most, and depending on their individual adaptation strategy. Originality/value This paper contributes to the understanding of modes of adaptation to care dependency from the perspective of adults indicating that working person centered may include respecting strategies not traditionally being associated with ?the good patient.?

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2017
Keywords
community care, care dependency, adaption, adaptation, older adults, patient perspective
National Category
Social Psychology
Research subject
Social Sciences, Social Work; Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-69061 (URN)10.1108/QAOA-05-2017-0016 (DOI)000416321600005 ()2-s2.0-85035347332 (Scopus ID)
Available from: 2017-12-01 Created: 2017-12-01 Last updated: 2019-08-29Bibliographically approved
Vingare, E.-L. (2016). Equal Rights for all?: A comparative study of dementia care and service in nine Swedish municipalities. In: 8th International Conference on Social Work in Health and Mental Health, Singapore 19th-23rd, June, 2016: . Paper presented at 8th International Conference on Social Work in Health and Mental Health, 19-23 June, 2016, Singapore.
Open this publication in new window or tab >>Equal Rights for all?: A comparative study of dementia care and service in nine Swedish municipalities
2016 (English)In: 8th International Conference on Social Work in Health and Mental Health, Singapore 19th-23rd, June, 2016, 2016Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background: According to Swedish legislation, all citizens have equal rights to receiving care and services when needed. National guidelines have been developed in order to secure regimentation, quality and clarity in the management of dementia care and services and other prioritized fields.   

Aim: The aim of this ongoing study is to describe and analyse differences and similarities in care and services towards citizens with dementia. Further, the aim is to discuss possible reasons for differences and similarities.   

Methods: A mapping study was conducted in nine Swedish municipalities. It covered 56 possible services, either generalized or specialized in the field of dementia or geriatric psychiatry. Specialization in terms of professional education was also covered. Approval of the study was granted by the regional Ethics committee in Lund (2010/538 and 2014/168).

Results: Several differences were found between municipalities. Hence, the care and services provided aren’t equal between municipalities. An explanation may be found in the institutional logics used to explain and choose local priorities. 

Keywords
equity, dementia care, elderly, welfare state, policy
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-77051 (URN)
Conference
8th International Conference on Social Work in Health and Mental Health, 19-23 June, 2016, Singapore
Note

Ej belagd 20181211

Co-authors in forthcoming publications related to the research project: Lottie Giertz and Ulla Melin Emilsson

Available from: 2018-08-03 Created: 2018-08-03 Last updated: 2018-12-11Bibliographically approved
Vingare, E.-L. & Umb Carlsson, Õ. (2016). "I always make coffee before they come”: A study of care dependency. In: 8th International Conference of Social Work in Health and Mental Health, Singapore, 19th-23rd June, 2016: . Paper presented at 8th International Conference of Social Work in Health and Mental Health, Singapore, 19th-23rd June, 2016.
Open this publication in new window or tab >>"I always make coffee before they come”: A study of care dependency
2016 (English)In: 8th International Conference of Social Work in Health and Mental Health, Singapore, 19th-23rd June, 2016, 2016Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background: An increasing number of people utilize the assistance of home care services, including home health and social care. Earlier research has shown that being the receiver of care in a home environment may make you vulnerable not only because of ill health and old age but also because of the subordinate role you get being in the receiving end of care. The importance of being considered an autonomous agent, despite being reliant upon care, has been focus of attention in earlier research.

Aim: The aim of this study is to explore and understand the meaning of care dependency in ordinary housing from a care receiver perspective, focusing on the ways in which people receiving home care services adapt to a situation of care dependency.

Method: The data was collected from nine Swedish municipalities. Ten respondents, 56-96 years of age, were interviewed. A phenomenological approach was used for the analysis. The study was approved by the regional ethics committee in Stockholm (2013/795-31/1).

Results: Four distinct ways of adaptive modes were found. These correlated to four obstructions to the adaptive process. Care dependency was found to be interconnected to three types of adaptive processes, i.e. adaptation to power imbalance, adaptation to specific roles/role changes, and adaptation to limitations in self and environment.

Keywords
adaption, care depedency, eldercare, home care
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-77050 (URN)
Conference
8th International Conference of Social Work in Health and Mental Health, Singapore, 19th-23rd June, 2016
Note

Ej belagd 20181211

Available from: 2018-08-03 Created: 2018-08-03 Last updated: 2018-12-11Bibliographically approved
Ranjbar, V., Näslund, M. S., Vingare, E.-L., Hagelthorn, C., Englund, L. & Karlsson, I. (2015). The Swedish Psychotrauma Society: joining forces for a national psychotrauma platform from a multidisciplinary and holistic approach. European Journal of Psychotraumatology, 6(Supplement 3), Article ID 28546.
Open this publication in new window or tab >>The Swedish Psychotrauma Society: joining forces for a national psychotrauma platform from a multidisciplinary and holistic approach
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2015 (English)In: European Journal of Psychotraumatology, ISSN 2000-8066, E-ISSN 2000-8066, Vol. 6, no Supplement 3, article id 28546Article in journal, Editorial material (Other academic) Published
National Category
Psychiatry
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-46251 (URN)10.3402/ejpt.v6.28546 (DOI)000380007800005 ()26073210 (PubMedID)2-s2.0-84977104468 (Scopus ID)
Available from: 2015-09-11 Created: 2015-09-11 Last updated: 2018-05-18Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-6408-2514

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