Ann-Charlotte Nedlund

To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden.

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.

To Coordinate Information in Practice : Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT 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.

Editorial introduction: Special issue on Citizenship and Dementia

Over the past 10 years, attention to notions of citizenship has played an increasingly important role in dementia discourse. Arguably, the focus on citizenship represents a ‘‘fourth moment’’ (Bartlett & O’Connor, 2010) or turn, in the development of understanding around dementia, where dementia moved from first being recognized predominantly as a natural sign of aging (senility), to a second period of constructing it as a primarily biomedical condition, followed by a third shift toward a more relational understanding that addressed the importance of seeing the person beyond the medical condition, to now considering the importance of embedding responses and relationships within broader socio-political practices and discourses. The language of citizenship challenges the tendency to problematize the experience of dementia as an individual experience by drawing attention to how people’s experiences are shaped by socio-cultural practices and assumptions: the personal is political. At core, it offers hope for the continued development of inclusionary practices that foster the possibilities for people living with dementia to live well and fully with their diagnosis. Different frameworks have been offered for conceptualizing citizenship as practice. Bartlett and O’Connor (2007, 2010), for example, conceptualize an understanding of social citizenship as a status, practice and relationship grounded by six fundamental rights. These include: opportunities for growth; to have one’s self recognized in a holistic way beyond simply that of a person with dementia; to retain purpose in one’s life irrespective of diagnosis; to participate as an active agent in one’s life; to create a sense of solidarity and belonging with others; and importantly, the right to live life free of discrimination. Another way for conceptualizing is offered by Gilmour and Brannelly (2010) who draw on relational care ethics to argue for a more relational citizenship grounded in attentiveness, responsibility, competence and responsiveness. (See also Brannelly, 2011a, 2011b). Baldwin (2008) draws attention to yet another aspect of citizenship as practice, that of

Constructing citizens: a matter of labeling, imaging and underlying rationales in the case of people with dementia

ABSTRACT A highly significant element in politics and policies is the process of constructing, categorizing and imaging – such as categorizing citizens as target groups. In governing documents, distinctions are drawn to distinguish deserving and undeserving categories of citizens. This paper explores the construction of citizenship for people with dementia and the connection to underlying categories of rationales, by analyzing how this group has been categorized and imaged in policy documents. The study is based on a qualitative textual analysis of national policy documents in Sweden, covering nearly 40 years. It shows that the way people with dementia have been imaged has differed over time, where people living with dementia have been situated in various target groups and discourses. However, to a large extent, the underlying understanding has nevertheless remained persistent where the position of people with dementia has remained weak. It offers a taxonomy of categories of rationales and shows the interplay of rationales and target groups for certain social constructions. The study offers insights into the policy process related to policy change, and on citizenship as something transformative and interrelated that risks upholding democratic values that delimit disempowered groups, in this case people with dementia, to influence their citizenship.