Social citizenship and people with dementia : Designing social care policies in Sweden

Abstract: 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.

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