Consensus statement synopsis 1 (Feb 2004)

The European Network on Consensus about Dementia

Proposes that the following principle should be applied in the care of people with dementia,

The diagnosis of dementia should be disclosed to the patients unless specific circumstances indicate that this would not contribute to the welfare of the patient nor improve the quality of care that they receive.

This consensus is based on the facts that:

 patients have the rights to know their diagnosis,

there is no unanimity about disclosing the diagnosis of dementia to the patient

the impairment of the patients’ cognitive functions and their ability to make sound judgments is characteristic of dementia and that this impairment might make it difficult for the patient to understand the meaning of the diagnosis in advanced stages of the disease,

the rights of the patients to know their diagnosis and the actual disclosure are  of paramount importance for an improvement of care for people with dementia and confidence between patients and their physicians.

it is evidence based that the patients should know their diagnosis because this can improve the relationship with the carers and facilitate addressing end-of-life issues in good time

 the patients’ consent to treatment and the protection of the principle of autonomy depend on their access to all relevant information

disclosure of the diagnosis is part of the process of collaboration between the physician and the patients and that the diagnosis should not be disclosed unless the diagnosis has been accurately assessed  and that diagnosis is needed before approriate  steps can be taken to support the patients’ further care

 physicians who will disclose the diagnosis of people with dementia must have diagnostic and communicational skills as well as experience and up-to-date medical knowledge

 The specific circumstances that limit the extent of disclosure of the diagnosis of dementia to the patient are

-        the presence of severe impairment of cognition so that the patients would not be able to understand the meaning of the diagnosis

-        the patients’ explicit wish not to know his diagnosis even after the disadvantages of not knowing the diagnosis have been discussed with the patient

-        the well funded opinion of the treating physician that the disclosure of the diagnosis might lead to a worsening of the patients’ state (e.g. through an increased risk of suicide, or severe depressive reactions)

Brussels, February 2004.