Living with Alzheimer's: experiences that challenge common representations of the disease

This article examines how people who have been diagnosed with Alzheimer's disease at the mild or moderate stage (N = 27, aged between 52 and 92) cope with the challenge of living with the disease. The analysis takes a comprehensive approach based on semi-structured interviews. This primary question is divided into two closely related investigations: an investigation of the experience of the disease, and an investigation of the experience of living with the disease. The article begins with two surprising findings based on the material gathered. The first is the low frequency of references to the disease in the respondents' reports; the second is the high frequency with which respondents report a degree of happiness and put the disease into perspective. These findings highlight a gap between patients' own experiences of Alzheimer's and common representations of the disease. This is followed by an exploration of how patients cope with the disease, from which the author derives two ideal-type positions: separation, i.e. distinguishing between the disease and oneself, and integration, i.e. accepting the disease as an integral part of oneself. The integration position is farther broken down into three modalities: coping with the losses, coping despite the losses and coping thanks to the losses. Lastly, the paper analyses the ways people live with the disease and develops the hypothesis that these experiences depend on the life contexts in which they take place by exploring two contexts: family and work (or non-work). Adapted from the source document.