Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

Bartlett, Ruth

doi:10.1080/09687599.2014.924905

Cited by 82 publications

(159 citation statements)

References 38 publications

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“…citizenship realised in relationship and through action (c.f. Sonnicksen, 2016;Österholm & Hydén, 2014;Bartlett, 2014) is further supported by Baldwin & Greason (2016) which introduces the concepts of midi-and micro citizenship to dementia studies. Nedlund & Taghizadeh Larsson (2016) and Boyle (2014) have studied citizenship in regards to self-determination and decision-making in institutional and legal contexts and outline practical implications concerning these issues regarding people with dementia.…”

Section: People With Dementia: a Citizenship Perspectivementioning

confidence: 99%

“…However, other studies have shown that people living with dementia can, and do, actively discuss their situation with different actors for example each other (Örulv, 2012), relatives (Hellström & Torres, 2013) and care managers (Österholm, 2016). Studies have also shown that people living with dementia are capable of political actions such as claim-making of specific rights (Bartlett, 2014) highlighting that people with dementia can be, and in fact are, active citizens.…”

Section: Other Types Of Dementia Diseasesmentioning

confidence: 99%

“…but only to a small degree on how these actually affect the everyday life of people living with dementia. However, this sort of research is still ongoing today but was at the end of the twentieth century, accompanied by other perspective on dementia (Bartlett, 2014).…”

Section: Previous Research On People Living With Dementiamentioning

confidence: 99%

“…Accordingly, people living with dementia are not considered as citizens like everyone else but rather as someone with disability. Bartlett (2014) has studied the experience of people living with dementia who are politically active in their community and concludes that this gives people living with dementia a reaffirmation of their citizenship identity because it (re)locates the individuals within a realm of work. However, the experience of these people is also that of feeling fatigue as well as oppression due to normative perceptions about their diagnosis.…”

Section: People With Dementia: a Citizenship Perspectivementioning

confidence: 99%

“…Hydén & Hellström, 2016;Hellström et al, 2015;Hydén 2014;Plejert et al, 2014, Hydén & Nilsson, 2013 which have moved beyond both the medical perspective as well as the personhood perspective of people living with dementia. Accordingly, research on people living with dementia has become more attentive to the fact that people living with dementia can be involved in social activities, as a participant in social environments and as political agents (Bartlett, 2014).…”

Section: People With Dementia: From a Medical Perspective To Personhoodmentioning

confidence: 99%

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

Nordh¹

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iii ABSTRACTPeople 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, i.e. the construction of people with dementia as citizens. The aim of this dissertation is to explore the social citizenship of people with dementia. Social citizenship for people with dementia is explored by studying how people with dementia have, in policy documents, 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. 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, and they are constructed as a burden, disturbing and incapable, wherein focus lies in their negative attributes. We further investigate in this dissertation, how street-level bureaucrats, in this case care managers, experience meeting with people with dementia when they apply for social services. This part of the dissertation is built upon 19 interviews with care managers from four different organisations, which show that care managers experience difficulties in their meetings with people with dementia. These difficulties comprise the exchange of information between care managers and people with dementia, refusal of social services by the person with dementia, 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 also 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. This requires that care managers are 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, such as the construction of people with dementia as well as the policy practice in which they encounter care managers, will affect their possibility to influence their social citizenship.Keywords: Social citizenship, people with dementia, policy, policy practice, policy actors, street-level bureaucrats, social work, care managers, rights Abstract iv 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, dvs konstruktionen av personer med demenssjukdom som medborgare. Syftet med denna avhandling är att undersöka det ...

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