Ethical issues that arise for people with dementia as well as family members, care workers and health professionals range from crisis decision-making (e.g. withholding and withdrawing life prolonging treatments) to challenging dilemmas (unconventional sexual expression and balancing freedom and safety as well as everyday concerns about truth-telling, confidentiality, communication and capacity to decide.
Dementia is a harm but it is generally acknowledged that individuals with dementia retain emotional and practical abilities long after they have suffered even severe cognitive losses. A focus on the latter sees only the impairment and conjures images of distress, dysfunction, dependence and depersonalization. However, individuals with dementia are not simply lost to themselves, their families and carers, nor are they the nightmare of ‘us’ or our loved ones in later life. Rather, dementia can be viewed as a condition of human life which offers an opportunity to interrogate our assumptions about selfhood, solidarity and moral responsibility.
Drawing on narrative accounts of selfhood and the notion of recognition; this paper argues that an ethical approach to the care of people with dementia forces a rethink of familiar ethical concepts such as autonomy and personhood and foregrounds communicative and contextual dimensions of the moral realm.