Caring for the incurable. The quality of life of the person with Alzheimer’s disease

After considering the two main approaches at the very foundation of the way the person with AD is considered and her/his illness is treated – the medical and the psychosocial ones - the concept of “existential labour” is proposed to refer to the discursive work involved in articulating, realizing and managing the unique selfhood of dementia sufferers in an attempt to play down the potentially discrediting implications of their unconventional behaviours and implement restorative and socially inclusive actions. This implies to move beyond the classical distinction between a purely medical, technical cure and a social, supportive care, given the close interconnection and the mutual influence between the two concepts that has significantly blurred the boundaries among them. The Chronic Care Model (CCM) is considered a proper strategy to translate the need to reconnect care and cure in a healthcare system oriented to chronic health condition such as Alzheimer’s disease, and an experimental project in the Local Health Authority of Catanzaro (Southern Italy) applying an expanded version of it is described and its outcomes assessed in terms of quality of life using the QoL-AD questionnaire. A multidimensional model of longitudinal analysis of QoL is elaborated to analyze these outcomes, and the paradoxical meaning of the results is highlighted and discussed.