title: To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden.
abstract: Since living with dementia implies increasing difficulties in taking charge of rights due to cognitive as well as communicative impairments, many people with dementia are vulnerable and in need of support in order to realize full citizenship. In Sweden, all adults right to self-determination is strongly emphasized in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The article shows that in the Swedish welfare system, the focus is more on protecting the self-determination of citizens than on supporting people in making decisions and exercising citizenship. Subsequently, this causes legally constructed zones of inclusion and exclusion. This article examines and problematizes how different institutional contexts, legal constructions, norms, and practices in Sweden affect the management of issues concerning guardianship, supported decision-making and self-determination, and outline the implications for people living with dementia.
authors.affiliation: CEDER-Center for Dementia Research, NISAL-The National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping university, Sweden ann-charlotte.nedlund@liu.se.
authors.forename: Ann-Charlotte
authors.initials: AC
authors.lastname: Nedlund
authors.affiliation: CEDER-Center for Dementia Research, NISAL-The National Institute for the Study of Ageing and Later Life, Department of Social and Welfare Studies, Linköping university, Sweden.
authors.forename: Annika
authors.initials: A
authors.lastname: Taghizadeh Larsson
mesh_terms: D003657:Decision Making; D003704:Dementia / Q000523:psychology*; D006801:Humans; D007872:Legal Guardians / Q000331:legislation & jurisprudence; D016743:Mental Competency / Q000331:legislation & jurisprudence*; D028642:Persons with Psychiatric Disorders / Q000331:legislation & jurisprudence*; D026684:Personal Autonomy; D012944:Social Support; D013548:Sweden
keywords: Citizenship; Sweden; decision-making capacity; legal representative; self-determination