Plaidoyer pour l’abolition du mot « démence » et autres terminologies apparentées

Abstract

ObjectivesThis article sets to explore the consequences of the predominant use of pejoratively connoted neuropsychiatric terminology relating to Alzheimer's disease (dementia, neurodegenerescence), although there are other more neutral terms. MethodTo explain the pejorative dimension, etymology, and also the history of these neuropsychiatric terms, are explored. In parallel, the authors underline recent evolutions in geriatrics concerning the contributions of neuropsychology and the neurosciences in research and care for Alzheimer's disease. ResultsAt the start of the 21st century, late neurocognitive disorders (senile dementia) have been linked to Alzheimer's disease (pre-senile dementia) on account of their neuropathology profiles. Pre-senile dementia has become pandemic, and entails numerous economic challenges linked to dependency. It is all the more stigmatizing because it is associated with complete and irreversible decline, in line with the generic language – dementia or neurodegenerescence – used to refer to it. DiscussionThe authors underline the use of other terms – “evolving neurological illness,” or “neurocognitive disturbances” – as a necessary but insufficient condition to put a stop to this stigmatization. Alongside, they report on the interest of global, humanistic approaches to the patient's experiences. What patients have to say is not always adequately heard, on account of their evolving cognitive disorders, and it is the families whose voices are most often heard. ConclusionWhile the neuro-psychological approach has had considerable impact on improving understanding Alzheimer's disease and other disorders, a global, humanistic approach nevertheless remains essential for patients with this disease, so as to promote their role as active protagonists on their own care trajectory. The authors thus underline the value of in-depth ethical reflection, integrating present knowledge and present practices in the accompaniment of patients.