JLE

Psychologie & NeuroPsychiatrie du vieillissement

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Enquête européenne sur l’établissement et la révélation du diagnostic de maladie d’Alzheimer. Etude réalisée a partir du recueil de l’opinion des aidants familiaux Volume 1, issue 1, Mars 2003

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Université Paul Valéry, Montpellier III. Faculté de Médecine Pitié-Salpêtrière. Université Paris VI

The disclosure of a diagnosis of Alzheimer’s disease is a complex and critical event. The aim of this study initiated by the Association Alzheimer-Europe was to explore 1) the context of the establishment of the diagnosis and the circumstances of its disclosure 2) the impact of the disclosure of the diagnosis on the patients and the caregivers 3) the amount and the adequacy of information provided by the physicians to the patients and the caregivers compared to their needs. Subjects. 323 caregivers were recruited through family associations in 11 European countries. Methods. Data were collected using a structured questionnaire filled in by the caregivers. Results. The caregivers’ profile broadly was similar to that found in the published literature. The initial symptoms noted by the family members were memory disorders and behavioral manifestations, both in 50% of cases and isolated each in approximately 25%. Half of the carers reported a delay of one year or more between the initial symptoms and the first medical examination. The diagnosis was made mostly by neurologists, but also by psychiatrists, geriatricians, general practioners or neuropsychologists in various proportions according to the different countries. The diagnosis was disclosed in front of the patients only in approximately half of the cases. When the diagnosis was disclosed to the family alone, 56% of the carers did not want the diagnosis to be disclosed to the patients. Negative reactions of the carers to the disclosure of the diagnosis were clearly linked with the physician’s attitude and time dedicated to information on the disease and its consequences. 43% of the carers were not satisfied by the information provided by the physicians and there was a discrepancy between the nature of the information provided by the physicians and the needs of the carers. Nearly one third of the patients had no regular follow-up after the diagnosis and 27% did not receive any treatment. Conclusion. This study shows important inadequacy in the management and counselling of patients with Alzheimer’s disease and their relatives. Consideration should be given to developing a new philosophy of care based on a better understanding between health professionals, patients and families.