Facing the ‘Alzheimer-ed Subject’

Then they left her alone as quickly as possible. They were politely kind to her when they ran into her, but they didn't run into her very often. This was largely because of their busy schedules and Alice's now rather empty one. Facing her meant facing her mental frailty and the unavoidable thought that, in the blink of an eye, it could happen to them. Facing her was scary.

The above passage is from the book Still Alice, this fictional account of the experience of Alice Howland, a Harvard Psychology Professor who was diagnosed with early-onset Alzheimer's disease (AD). The book portrays changes over time in the subjectivity of a person with AD, from early and subtle symptoms to the point of profound difficulties in recent memory and functioning. Without the anchor of recent memory, her world unravels and fragments and is often profoundly distressing to her. Alice's presence and her suffering also create discomfort in others. They avoid her, have difficulty ‘facing’ her.

Genova's account focuses our attention on the illness experiences and moral dimensions of the interpersonal response to the suffering other in the context of Alzheimer's. To illuminate these issues, this paper draws on Emmanuel Levinas’ work and focuses on the moral and ethical imperative and challenges of engaging persons with Alzheimer's. It has three parts. First, I consider briefly the emerging body of work on Alzheimer's and subjectivity, highlighting its multiplicity. Next, I examine key concepts from Levinas’ work, particularly the moral and ethical challenges of the relationship between self and other in the context of suffering. Third, I highlight the contemporary ‘objectification’ of the subjectivity of the person with Alzheimer's—transforming them into an ‘Alzheimer-ed subject’ and impeding empathic connection.

In contrast to the sense of homogeneity evoked by monolithic categories such as Alzheimer's disease, there