This contribution sets out to criticize the prominent metaphor of "death while alive" in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences.
Keywords: Dementia; Illness metaphors; Life course; Moral reasoning; Regime of living.
© 2022. The Author(s).