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Experiences of the patients and their caregivers regarding the disclosure of the diagnosis of Alzheimer’s disease: a Belgian retrospective survey

Abstract

Although the disclosure of the diagnosis of Alzheimer’s disease (AD) is recommended by several guidelines, many clinicians do not announce the diagnosis to their patient. One of the main arguments against disclosure is the fear of a depressive reaction. Our aim was to report the experience and agreement of patients and their caregivers regarding the disclosure of the diagnosis of AD. All the patients with a diagnosis of AD attending our memory clinic were screened during 1 year. The patients and their caregivers were interviewed with a structured questionnaire. We included 108 patients (mean age = 77; Mini-Mental State Examination = 21) and matched caregivers (mean age 65). Twenty-nine percent of patients said they had suffered when the diagnosis was disclosed and 5 % wished they had not been informed. Four percent felt more sad or depressed and 14 % more anxious since the disclosure. The caregivers reported that 32 % of patients had suffered from the disclosure, but only 15 % were still suffering. In 85 % of cases, the caregivers thought that the disclosure was useful. If they could go back in time and decide whether to disclose or not the diagnosis, only 4 % of caregivers would retrospectively disagree to disclose the diagnosis to the patient. The disclosure of AD can induce anxiety and sadness. However, these negative feelings seem to persist only in a minority of patients. The vast majority of patients and caregivers agrees with the disclosure.

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Mormont, E., de Fays, K. & Jamart, J. Experiences of the patients and their caregivers regarding the disclosure of the diagnosis of Alzheimer’s disease: a Belgian retrospective survey. Acta Neurol Belg 112, 249–254 (2012). https://doi.org/10.1007/s13760-012-0069-2

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  • DOI: https://doi.org/10.1007/s13760-012-0069-2

Keywords

  • Alzheimer’s disease
  • Diagnosis
  • Disclosure
  • Survey