Disclosure of the Diagnosis of Dementia to the Patient

N. Sartorius[*]

Geneva, Switzerland

The European Dementia Consensus Network (EDCON) is a group currently working on the development of consensus statements concerning key issues in the care of the elderly with mental disorders, particularly dementia.  The themes of these consensus statements will be as follows:[†]

§       Disclosure of the diagnosis of dementia to the patient

§       Improving standards of care for people with dementia

§       Access to diagnosis and treatment for people with dementia

§       Assessment of competence in dementia

These themes have been selected after consultation with organizations of patients’ families and experts.  For each of them a review of available knowledge will be developed by a special Task Force.  The review will be circulated for comments and suggestions from leading experts and relevant organizations.  These comments will be taken into account in finalizing the review and drafting a consensus statement.  The organizations that have so far expressed an interest in considering their endorsement of the consensus statement are listed below.

§       European Federation of Neurological Societies (EFNS)

§       European Alzheimer’s Disease Consortium (EADC)

§       International Psychogeriatric Association (IPA)

§       Association of European Psychiatrists (AEP)

§       World Psychiatric Association (WPA)

§       Standing Committee of European Nurses (SCEN)

§       European Federation of Older Persons (EURAG)

§       European Union Geriatric Medicine Society (EUGMS)

The first consensus statement deals with the disclosure of diagnosis of dementia to the persons concerned and to their families.  It runs as follows:

Recalling that it is now well established that patients have the rights to know their diagnosis,

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

Recognizing that 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,

Convinced that the respect of the rights of the patients to know their diagnosis and the importance of the disclosure of diagnosis for the relationship of confidence between the patients and their physicians are both of paramount importance for an improvement of care for people with dementia

Informed by surveys of opinions of patients' families and other carers that it is important for the patients to know their diagnosis because this can improve the relationship with the carers and facilitate addressing end-of-life issues in good time

Cognizant of the fact that the patients' consent to treatment and the protection of the principle of autonomy depend on their access to all relevant information

Firmly holding the view that 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 firmly established and appropriate steps can be taken to support the patients' further care

Aware also of the fact that the disclosure of the diagnosis and the care of people with dementia require diagnostic and communicational skills as well as experience and medical knowledge

Proposes that the following principle should be applied, by consensus

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.

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 founded 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)

It is of course clear that the implementation of the recommendations contained in the Consensus Statement requires several sets of activities.  The training of health staff will have to be improved so as to make it possible for them to convey the diagnosis in an appropriate and helpful manner.  Quality control and monitoring of procedures concerning the disclosure, as well as of other procedures in psychogeriatrics is another prerequisite for improved care.  Finally it is of importance to ensure that staff not only accepts to invest time and effort to the disclosure of diagnosis and provide humane care but also that services be appropriately supported to make such an investment of time possible.