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Social citizenship and people with dementia: Designing social care policies in Sweden
Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences. (Center for Dementia Research (CEDER))
2016 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Socialt medborgarskap och personer med demenssjukdom : Policyskapande inom svensk social service (Swedish)
Abstract [en]

People with dementia are commonly in need of some form of social care from the social services in order to manage their everyday situations. However, social services are shaped by the construction of policy targets. The aim of this dissertation is to explore the social citizenship for people with dementia. Social citizenship for people with dementia is explored by studying how people with dementia, in policy documents, have been constructed as a target group and also by studying how policies are enacted in practice by care managers, in their work and in their meetings with people with dementia. This is illustrated by studying policy documents from national level which range over nearly 40 years and 19 interviews with care managers. It is shown that, if and when, people with dementia are visible in policy documents, they commonly have a negative construction based on their cognitive and communicative abilities, as a burden, disturbing and incapable. It is further investigated how street-level bureaucrats, in this case care managers, experience meeting with people with dementia when they apply for social services. It is shown that care-managers experience difficulties concerning this group comprised of the exchange of information between care managers and people with dementia, refusal of social services by the person, the influence of relatives and other professions as well as moral dilemmas, such as the relations between the person with dementia and their relatives. The study shows that care managers have little support from policies, e.g. legislation and guidelines, in how to handle these dilemmas, and must thus create their own local ways of handling these situations. Care managers are thus influential policy actors concerning the policy target group of people with dementia. The policy processes which this dissertation illustrates, affect the social citizenship of people with dementia. It is shown that they, to an extent, have difficulties in influencing their own everyday situation concerning social services. Finally, the policy processes, will affect their possibility to influence their social citizenship.

Abstract [sv]

Personer med demenssjukdom behöver vanligtvis någon form av socialt stöd från socialtjänsten för att kunna hantera sin egen vardag. Emellertid så är socialt stöd format av konstruktionen av policymålgrupper. Syftet med denna avhandling är att undersöka det sociala medborgarskapet för personer med demenssjukdom genom att studera hur dessa personer, som policymålgrupp, har konstruerats i policydokument samt hur policys iscensätts i praktiken av biståndshandläggare inom socialtjänsten, i deras arbete och i deras möten med personer med demenssjukdom. Detta belyses genom studier policydokument på nationell nivå som spänner över nästan 40 år samt intervjuer med 19 biståndshandläggare. Studien visar att om och när personer med demenssjukdom är synliga i policydokument så har de vanligtvis en negativ konstruktion som baseras på deras kognitiva- och kommunikativa förmågor, som betungande, störande och inkapabla. Vidare undersöks i denna avhandling hur gräsrotsbyråkrater, i form av biståndshandläggare, upplever mötet med personer med demenssjukdom då de ansöker om socialt stöd från socialtjänsten. Det visas att handläggare upplever svårigheter i deras möten med denna grupp. Svårigheterna ligger i utbytet av information mellan handläggare och personen med demens, vägran från personen att ta emot stöd, inflytande från anhöriga och andra professioner samt moraliska dilemman som relationen mellan personen med demenssjukdom och anhöriga. Handläggare har lite stöd från policys, såsom lagar och riktlinjer, i hur de ska hantera dessa svårigheter och måste således hitta egna, lokala, sätt att hantera dessa situationer. Handläggare är således inflytelserika policyaktörer rörande policymålgruppen personer med demenssjukdom. De policyprocesser som avhandlingen berör påverkar det sociala medborgarskapet för personer med demenssjukdom. Det visas att de, till viss del, har svårigheter att påverka sin egen vardag i relation till stöd från socialtjänsten. Slutligen påverkar policyprocesser möjligheten för personer med demens att påverka sitt sociala medborgarskap.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2016. , 84 p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 696
Keyword [en]
Social citizenship, people with dementia, policy, policy practice, policy actors, street-level bureaucrats, social work, care managers, rights
Keyword [sv]
Socialt medborgarskap, personer med demenssjukdom, policy, policypraktik, gräsrotsbyråkrater, socialt arbete, biståndshandläggare
National Category
Social Work Other Social Sciences not elsewhere specified Social Sciences Interdisciplinary Sociology (excluding Social Work, Social Psychology and Social Anthropology) Ethnology
URN: urn:nbn:se:liu:diva-131477ISBN: 9789176856765 (Print)OAI: diva2:972785
Public defence
2016-10-28, K2, Hus Kåkenhus, Campus Norrköping, Norrköping, 13:00 (English)
Available from: 2016-09-22 Created: 2016-09-22 Last updated: 2016-09-22Bibliographically approved
List of papers
1. Crafting citizen(ship) for people with dementia: How policy narratives at national level in Sweden informed politics of time from 1975 to 2013
Open this publication in new window or tab >>Crafting citizen(ship) for people with dementia: How policy narratives at national level in Sweden informed politics of time from 1975 to 2013
2015 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 34, 123-133 p.Article in journal (Refereed) Published
Abstract [en]

This article explores how policy narratives in national policy documents in Sweden inform associated politics on people with dementia. This is disentangled in terms of how people with dementia have been defined, what the problems and their imminent solutions have been, and if and how these have differed overtime. Based on a textual analysis of policy documents at national level in Sweden, covering nearly 40 years the study shows how divergent policy narratives shape the construction of citizens with dementia as policy target groups. This study shows the temporal character of people with dementia as a political problem, the implications of policy narratives on people with dementia as a citizen group, and policy narratives as something being crafted rather than shaped by fixed pre-existing "facts". Dementia, and further citizens living with dementia, does not have a once and for all stabilised meaning. Instead, the meanings behind the categories continue to evolve and to be crafted, which affects the construction of citizens living with dementia, the space in which to exercise their citizenship and further belonging to the society.

Place, publisher, year, edition, pages
Elsevier, 2015
Dementia; Citizenship; Policy narratives; Policy-making; Social construction; Sweden
National Category
urn:nbn:se:liu:diva-120866 (URN)10.1016/j.jaging.2015.06.003 (DOI)000359029400013 ()26162732 (PubMedID)

Funding Agencies|bank of Sweden Tercentenary Foundation as part of the programme Dementia: Agency, Personhood and Everyday Life [M10-0187:1]

Available from: 2015-08-28 Created: 2015-08-28 Last updated: 2016-09-22
2. To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia
Open this publication in new window or tab >>To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia
2016 (English)In: Journal of social service research, ISSN 0148-8376, E-ISSN 1540-7314, 1-17 p.Article in journal (Refereed) Epub ahead of print
Abstract [en]

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.

Place, publisher, year, edition, pages
Taylor & Francis, 2016
National Category
Social Work Other Social Sciences not elsewhere specified Nursing Health Care Service and Management, Health Policy and Services and Health Economy Social Sciences Interdisciplinary
urn:nbn:se:liu:diva-131476 (URN)10.1080/01488376.2016.1217580 (DOI)
Available from: 2016-09-22 Created: 2016-09-22 Last updated: 2016-09-22Bibliographically approved

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