The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible to plan (...) all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondents. (shrink)

Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis is that a more (...) inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand. (shrink)

In this article, I use the work of Alfred North Whitehead and Isabelle Stengers to challenge the biomedical and commonsense view that those diagnosed with Alzheimer's disease suffer an irreparable and inevitable loss of self and that this loss is inextricably tied to a decline in linguistic capability which itself bears immediate witness to a deterioration in the brain. Through an analysis of Whitehead's (1933, 1938) provocative conceptualization of the soul, and Stengers' (2005) reading of this, I suggest that it (...) is possible to dislocate language from its supposed position as that which produces and fully expresses human experience. This involves a challenge to the ‘linguistic turn’ as to be found in much contemporary social theory, philosophy and social psychology. The discussion of Whitehead's (and Stengers') ideas regarding the soul involves a reading of Whitehead's notions of ‘propositions’, ‘contrasts’ and the ‘social environment’. Through these analyses, I seek to relocate the problem of language and identity and its relation to Alzheimer's disease. I go beyond any reduction of the problem either to its social component, where the self is seen as a resolutely human ‘person’, or to its natural element, where Alzheimer's disease is seen solely as a problem located within the brain. Instead, I try to think the natural and social together. My aim is not to explain away the problem but to suggest a more productive way of thinking about those diagnosed with Alzheimer's disease, and ourselves. (shrink)