Maladies neurodégénératives : enquête sur la connaissance de la maladie et les attentes du patient et de son aidant principal

Practitioners who have to announce the diagnosis of a neurodegenerative disease find little help in the literature. This raises many questions. We report herein results of a study conducted among patients with dementia and their caregivers. The goal was to focus on knowledge of the disease and the expectations of both patients and their caregivers. Forty-seven patients and their caregiver were interviewed separately between June and September 2007. Patients and caregivers gave similar reasons for consultation (memory impairment for 63.8% or patients and 89.4% of caregivers) and the desired to be informed (78.7% and 93.6% respectively). Patients wanted information to be shared with their relatives, while the caregivers did not want the diagnosis to be disclosed to patients (38.3% and 10.6% respectively). In our opinion, it is very important to elaborate a strategy of announcement with a pluridisciplinary approach including the patient.