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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
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
Giertz, L. (2018). En studie av inflytande och självbestämmande med personlig assistans (1ed.). In: Altermark, Knutsson & Svensson Chowdhury (Ed.), Forskning om personlig assistans - en antologi: (pp. 97-104). Stockholm: KFO Personlig assistans
Open this publication in new window or tab >>En studie av inflytande och självbestämmande med personlig assistans
2018 (Swedish)In: Forskning om personlig assistans - en antologi / [ed] Altermark, Knutsson & Svensson Chowdhury, Stockholm: KFO Personlig assistans , 2018, 1, p. 97-104Chapter in book (Other academic)
Place, publisher, year, edition, pages
Stockholm: KFO Personlig assistans, 2018 Edition: 1
Keywords
inflytande, självbestämmande, personlig assistans, funktionshinder
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-82116 (URN)9789163999710 (ISBN)
Available from: 2019-04-24 Created: 2019-04-24 Last updated: 2019-05-03Bibliographically approved
Giertz, L. (2018). Guardianship for Adults with Intellectual Disabilities: Accountant, Advocate or ‘Family’ Member?. Scandinavian Journal of Disability Research, 20(1), 256-265
Open this publication in new window or tab >>Guardianship for Adults with Intellectual Disabilities: Accountant, Advocate or ‘Family’ Member?
2018 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 20, no 1, p. 256-265Article in journal (Refereed) Published
Abstract [en]

The overarching aim of this study is to explore guardianship in terms of its impact on daily lives of adults with intellectual disabilities in Sweden. Based on qualitative interviews, the article focuses on the expected and actual role of limited guardians for people with intellectual disabilities in the context of Swedish laws. Our findings show that the legal definition of limited guardianship is unclear, and that this lack of clarity among other dilemmas creates conflict among clients, guardians, relatives, professionals and care workers. The guardian may be expected to act as an accountant, a legal advocate, or even a surrogate family member. The result is consistent with previous research in other countries on the consequences of guardianship. The current legislation on limited guardianship is in need of amendment in order to avoid legal uncertainty and ambiguity among clients and their support network.

Place, publisher, year, edition, pages
Stockholm: Stockholm University Press, 2018
Keywords
limited guardian, guardianship, intellectual disability, assisted decision-making, Sweden
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-75629 (URN)10.16993/sjdr.40 (DOI)2-s2.0-85051105101 (Scopus ID)
Available from: 2018-06-12 Created: 2018-06-12 Last updated: 2019-08-29Bibliographically approved
Giertz, L., Melin Emilsson, U. & Albertsson, M. (2018). Ställföreträdarskap och livet med demens: En studie om självbestämmande, samtycke och företrädarskap.
Open this publication in new window or tab >>Ställföreträdarskap och livet med demens: En studie om självbestämmande, samtycke och företrädarskap
2018 (Swedish)Report (Other (popular science, discussion, etc.))
Publisher
p. 123
Keywords
demens, självbestämmande, samtycke, ställföreträdare
National Category
Social Sciences
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-82117 (URN)
Available from: 2019-04-24 Created: 2019-04-24 Last updated: 2019-05-06
Giertz, L. (2015). Gode män och förvaltare till vuxna huvudmän i Växjö kommun  ÅR 2014. Växjö
Open this publication in new window or tab >>Gode män och förvaltare till vuxna huvudmän i Växjö kommun  ÅR 2014
2015 (Swedish)Report (Other academic)
Place, publisher, year, edition, pages
Växjö: , 2015. p. 54
National Category
Law Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-50392 (URN)
Available from: 2016-03-08 Created: 2016-03-08 Last updated: 2016-03-21Bibliographically approved
Giertz, L. (2014). Brukardelaktighet i social barnavård: En metodprövning av ”brukarråd” för familjehemsplacerade barn.
Open this publication in new window or tab >>Brukardelaktighet i social barnavård: En metodprövning av ”brukarråd” för familjehemsplacerade barn
2014 (Swedish)Report (Other academic)
Publisher
p. 63
Keywords
brukardelaktighet, social barnavård, brukarråd, familjehemsplacering
National Category
Social Work
Research subject
Social Sciences, Social Work
Identifiers
urn:nbn:se:lnu:diva-50387 (URN)
Projects
Projekt för utveckling inom den sociala barn- och ungdomsvården, inom ramen för regionala stödstrukturer för evidensbaserad praktik inom socialtjänsten
Available from: 2016-03-08 Created: 2016-03-08 Last updated: 2016-03-21Bibliographically approved
Giertz, L. & Thörnblad, M. (2013). Unterstützung und Hilfen für Menschen mit Behinderungen in Schweden: Gesetze, Trends und Arbeitsmethoden (1ed.). In: Kathrin Blaha, Christine Meyer, Herbert Colla, Stefan Müller-Teusler (Ed.), Die Person als Organon in der Sozialen Arbeit: Erzieherpersönlichkeit und qualifiziertes Handeln (pp. 293-311). Wiesbaden: Springer
Open this publication in new window or tab >>Unterstützung und Hilfen für Menschen mit Behinderungen in Schweden: Gesetze, Trends und Arbeitsmethoden
2013 (German)In: Die Person als Organon in der Sozialen Arbeit: Erzieherpersönlichkeit und qualifiziertes Handeln / [ed] Kathrin Blaha, Christine Meyer, Herbert Colla, Stefan Müller-Teusler, Wiesbaden: Springer, 2013, 1, p. 293-311Chapter in book (Other academic)
Abstract [de]

Soziale Arbeit vollzieht sich nicht nur lokal, sondern hat zunehmend auch internationale Dimensionen – sei es in dem Anwerben von Fachkräften aus anliegenden Grenzgebieten oder in dem Vergleich von Gesetzen und Konzepten. Insbesondere in den Hilfen für Menschen mit Behinderungen liegt in Schweden im europäischen Vergleich eine Selbstverständlichkeit zugrunde, an die andere Länder (so auch Deutschland) bei weitem noch nicht heranreichen. Das betrifft nicht nur die Assistenzdienste, sondern auch die Akzeptanz in der Bevölkerung und die sich daraus ergebenden „inklusiven“ Aspekte. Daher haben wir den nachfolgenden Text von zwei schwedischen Kolleginnen in dieses Buch mit aufgenommen, um eine Möglichkeit des Vergleiches zu haben.

Place, publisher, year, edition, pages
Wiesbaden: Springer, 2013 Edition: 1
National Category
Sociology
Research subject
Social Sciences, Sociology
Identifiers
urn:nbn:se:lnu:diva-43699 (URN)10.1007/978-3-531-94216-2_17 (DOI)978-3-531-17684-0 (ISBN)978-3-531-94216-2 (ISBN)
Available from: 2015-06-05 Created: 2015-06-05 Last updated: 2015-06-15Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-7817-2716

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