Abstract
The article focuses on the impact of the concept of self-care on persons who are understood as incapable of self-care due to their physical and/or mental ‘incapacity’. The article challenges the idea of this health care concept as empowerment and highlights the difficulties for persons who do not fit into this concept. To exemplify this, the self-care concept is discussed with regard to persons with Alzheimer’s disease (AD). In the case of persons with AD, self-care is interpreted in many different ways—depending on the point of view, for instance as an affected person or a carer. To prevent a marginalisation of the growing group of elderly persons with dementia, the article argues that concepts such as those of personhood, wellbeing, autonomy, rationality and normality have to be re-thought with regard to an increasingly ageing population. Taking into account that AD as a socio-medical construct has to be understood in the context of power relations, the article focuses on the mutual influence between the concepts of self-care and of AD and its possible impact on governing dementia and AD in particular. Michel Foucault’s considerations on ‘technologies of the self’ provide the basis for the discussion of the self-care concept within existing societal power relations.
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Notes
The definition of dementia by the WHO can be found in ‘Mental and behavioural disorders’ (F00–F99), ‘Organics, including symptomatic, mental disorders’ (F00–F09) (World Health Organization 2006). In this classification, F00* is the code for dementia in Alzheimer’s disease, F00.0* for dementia in Alzheimer’s disease with early onset and F00.1* for dementia in Alzheimer’s disease in late onset.
I use quotation marks for the term ‘patient’, On the one hand, the term is in a way necessary for discussing the self-care concept (as a public health concept), but on the other hand, it is a direct expression of the medicalisation process of dementia. Also, I got the impression during a participant observation in a ward for persons with dementia in Vienna that women and men with dementia do not represent the ‘classical patient’. At least in this specific ward the problems with the ‘medical model’ of dementia become obvious. It is at the same time a hospital and a nursing home—with the effect that respective laws of both fields apply to the ward and, more important, hamper each other. This makes the situation for care and adequate practices in this ward more complicated. For a discussion of the term ‘patient’ see Sabat (2006, 297).
Quote by Auguste Deter (1902).
The ‘public image’ of dementia and Alzheimer’s disease is not a positive one (cf. Schermer 2003, 35). AD is for instance described as “a living death, a never ending funeral, and a private hell of devastation.” (Kontos 2006, 195). Understandably, within this perception of personhood and the self, such images cause fear and anguish and lead to “defensive tactics” (Kitwood 2006, 14) which serve to fortify the walls between ‘them’ and ‘us’. At that time also embedded in the context of a fear of ‘loss of the self’, it seems as if Auguste Deter, Alois Alzheimer’s patient, unintentionally initiated this debate with her famous quote. As Jesse Ballenger (2006) puts it, “Alzheimer’s disease is deeply troubling both because of what it does to people who have it and because people with this disease remind us so pointedly of our own difficulties in creating and maintaining selfhood.” (Ballenger 2006, 153) [Emphasis added].
Understood in the context of a “configuration of the self that involves not only a reflexive relationship of self to self, but also a relationship of self to others” (Ricoeur 1992, cited in Dekkers and Rikkert 2007, 147).
Aristotle, Nichomacean Ethics Book I [1097b 34–1098a 17].
For a discussion of an increasing medicalisation in the context of medicine as a ‘moral endeavour’ see Illich (2001).
See Alan Petersen (2000) for the discussion of the ‘individual-as-enterprise’.
Although DASNI (Dementia Advocacy and Support Network International; see http://www.dasninternational.org) provides a perfect example for the involvement of persons with dementia in lobbying for their concerns.
For instance with regard to questions of informed consent and respective legal possibilities to protect certain groups in society.
For a discussion of difference and identical see Deleuze (1994).
Repression and alienation as cases of ‘natural blocking’, as Deleuze argues (1994).
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Acknowledgements
Research on this article has been supported by the GEN-AU (Genomeresearch in Austria) Programme (http://www.gen-au.at) of the Austrian Federal Ministry of Science and Research. I am grateful to Pete Connolly, Thilo Kroll, Georg Lauss, Ingrid Metzler, Jane Neuda, Barbara Prainsack and the anonymous reviewers for valuable comments.
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Naue, U. ‘Self-care without a self’: Alzheimer’s disease and the concept of personal responsibility for health. Med Health Care and Philos 11, 315–324 (2008). https://doi.org/10.1007/s11019-008-9125-3
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DOI: https://doi.org/10.1007/s11019-008-9125-3