People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to identify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.
The Mental Capacity Act 2005 came into force in England and Wales during 2007. The Act enshrines a legal right to autonomy (negative and positive) of people lacking decision-making capacity, such as people with dementia. This paper examines the extent to which the legislation promotes the social citizenship of people with dementia, focusing on its effectiveness in protecting liberty and promoting self-determination and in providing social rights to facilitate autonomy. In particular, the author considers the degree to which the Act will facilitate decision-making by people with dementia, centring on decisions relating to where to live (at home or in an institution). In addition, the historical detention (usually informal) of people with dementia in institutional care, and the role of the Act in promoting recognition of their right to liberty, is highlighted. However, the author points out that the civil rights to liberty and self-determination accorded under the Act--particularly the right to decide where to live--are restricted rights only, as the views of the person lacking capacity can be over-ridden by the decisions of others. In addition, the facilitation of these civil rights is constrained by a lack of access to social rights, particularly the availability of domiciliary and community services to avoid institutional admission. Consequently, whilst the legislation promotes the social citizenship of people with dementia, it has limited capacity to facilitate their full citizenship status.
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Bradford Scholars -how to deposit your paper
Overview
Copyright check• Check if your publisher allows submission to a repository.• Use the Sherpa RoMEO database if you are not sure about your publisher's position or email openaccess@bradford.ac.uk.
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