Using this case, Lavazza and Reichlin (2018) explored the ethical dilemmas associated with decision making in people with Alzheimer’s disease (AD), specifically when their new preferences conflict...

There is always a debate around consent in the context of research. Given the expansion of different approaches to qualitative research within dementia care, there is increasing consideration around consent in this context; particularly in research concerning the experiences of living with dementia and the care of persons with dementia. Specifically there is a drive to directly involve persons with dementia as they offer specific expertise concerning living with dementia. Additionally, capacity legislation strengthens the case for ensuring that persons with (...) dementia are actively enabled to make their own decisions for as long as possible. This paper discusses an approach and method that can enable more persons who are living with dementia to participate in some types of research should they want to. Currently, most researchers rely on an extension of the traditional competency-based informed consent method and/or proxy consent or assent. However, related to the development of so-called person-centred and participatory research in dementia, there are now a number of academic publications on approaches and practical methods of ‘inclusionary’ consent. This paper considers the broader contextual influences on inclusionary consent and outlines the key aspects of such approaches based on the development of one specific method for including persons with dementia in consent processes. The method is based on the premise that, for persons with a dementia, informed consent becomes increasingly redundant and consequently exclusionary to them as persons. And even where capacity is said to no longer exist, persons with dementia are often able to make choices and make known their preferences about participating in research where the consent process is made specifically dementia-sensitive. Ethics committees can facilitate researchers both by supporting them when they need to and want to include persons with dementia in gerontological research and by challenging them to ensure that participation is genuine and starts with process consent. (shrink)

As older people begin to develop dementia, we confront ethical questions about when and how to intervene in their increasingly compromised decision-making. The prevailing approach in bioethics to tackling this challenge has been to develop theories of “decision-making capacity” based on the same characteristics that entitle the decisions of moral persons to respect in general. This article argues that this way of thinking about the problem has missed the point. Because the disposition of property is an identity-dependent right, what matters (...) in dementia and decision-making is an individual’s personal identity with their prior self, not their moral personhood. Therefore, in considering when and how we ought to intervene in the decision-making of those with dementia, we must look to the philosophy of personal identity rather than personhood. (shrink)

Loss of self is widely regarded to be a consequence of dementia, and this perceived loss presents a variety of problems - not least because a clear understanding of the concept of self is elusive. This paper suggests a way to cut through problems that arise because we rely on conceptions of self in our understanding of the effects of dementia. It is proposed that we can avoid reliance on the concept of self through an approach based in in bio-phenomenology. (...) Such an approach would help us better understand the inner life of those with dementia and assist us to recognize that even in late stage dementia they are semiotic subjects with unique value. (shrink)