From Illness as Culture to Caregiving as Moral Experience

Taking care of a spouse with Alzheimer's disease validates the author's insistence on the primacy of patients' experience of illness, while deepening his questioning of the application of the illness–disease distinction and clarifying the moral processes of caregiving. In the early 2000s, my wife developed early-onset Alzheimer's disease, and I got taken up in the everyday reality of being her primary caregiver. The experience was transformative on a professional as well as a personal level: although it validated my decades-long insistence on the primacy of patients' lived experience of illness, it deepened my questioning of the distinction, which I had popularized, between illness (as patients experience it) and disease (as physicians diagnose, treat, and understand it). The usefulness of this conceptual divide began to seem inadequate to me, just as I was becoming dismayed by the way it . . .