Consensus statement on genetic research in dementia.

In this article, the authors describe how the European Dementia Consensus Network developed a consensus on research ethics in dementia, taking into account the questions posed by the era of genetic research and its new research methods. The consensus process started with a Delphi procedure to analyze relevant stakeholders' positions by describing their statements on the possibilities and limitations of research into genetic determinants of Alzheimer disease and to describe and analyze the moral desirability of genetic research on Alzheimer disease. The conclusions drawn from the Delphi procedure fuelled the development of the consensus statement, which is presented in this paper. The consensus statement aims to stimulate ethically acceptable research in the field of dementia and the protection of vulnerable elderly patients with dementia from application of inadequate research methods or designs.

Access to diagnostic evaluation and treatment for dementia in Europe.

This paper reviews and discusses existing barriers to diagnosis and treatment for patients with dementia in Europe as well as approaches to overcome these barriers. The barriers to care are manifold, being present at all levels in each society and between countries in Europe. Multilevel and multifaceted strategies are needed to improve diagnosis and treatments for all patients with cognitive complaints. A multidisciplinary approach based on close collaboration between GPs and specialised memory clinics may be the ideal model for early accurate diagnosis and subsequently early pharmacological and psychosocial interventions. For all healthcare professionals, there should be specialised training in dementia and frequently updated practice guidelines to provide the framework for standards of care. Culture-sensitive strategies to promote public knowledge and destigmatize dementia are essential. Policy makers and authorities should be made aware of the benefits of early access to diagnosis and treatment.

[On the disclosure of the diagnosis of Alzheimer's disease]. / Réflexions sur l'annonce du diagnostic de la maladie d'Alzheimer.

In contrast to the legal or professional instructions, many French or European physicians remain reluctant for disclosing the diagnosis of Alzheimer's disease to their patients. The reasons put forward for not telling the truth appear to be no more justified. The wish to protect the patient from negative reactions as well as the argument that the patient is not able to understand the significance of the diagnosis are not clinically grounded. Moreover, the situation is presently modified by new circumstances: the early diagnosis of the illness in most cases and the availability of active drugs and support measures. Therefore, it appears necessary to more deeply understand the difficulties met by the patient, the family but also by the physician in the process of disclosure of the diagnosis of Alzheimer's disease. In this purpose, some practical suggestions are presented to facilitate the dynamic of the communication between physician, patient and family.

[European survey on current practice and disclosure of the diagnosis of Alzheimer's disease. A study based on caregiver's report]. / 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.

UNLABELLED: 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.