Disclosure of diagnosis

Executive Summary

The purpose of this document is to present Alzheimer Europe’s position on the disclosure of the diagnosis of dementia to people with dementia and their carers. This position is based on work carried out in the framework of the Lawnet project (1998) [1], which led to the drafting of recommendations on how to improve the legal rights and protection of people with incapacity, a survey [2] carried out by Alzheimer Europe involving over 1,000 carers of people with Alzheimer’s disease (in Scotland, Poland, France, Germany and Spain) and recent research.

1. People with dementia have the right to be informed of their diagnosis.
2. Whilst care should be taken to avoid causing unnecessary anxiety and suffering, information about the diagnosis should not be withheld solely on the grounds that a person has dementia, memory problems and/or communication difficulties.
3. Additional information should be provided when the diagnosis is disclosed about the person's general state of health, prognosis, treatment possibilities, potential risks and side-effects linked to anti-dementia drugs, psychosocial and non-pharmacological approaches to managing symptoms and cognitive decline, the availability of services to which the person is entitled and the name of the doctor who will have overall responsibility for the person’s ongoing care/treatment.
4. Written information should always be provided as a back-up.
5. People with dementia may have difficulty taking in all the information provided at the time of diagnosis. For this reason, it should be possible for them to have a second meeting with their doctor at a later date in order to obtain further information/clarification concerning the diagnosis. They should also have access to other forms of post-diagnostic support.
6. Every person diagnosed with dementia should be provided with the contact details of the national and local Alzheimer associations at the time of diagnosis, along with information about the kinds of services that the associations offer.
7. A system should be devised in order to ensure that all relevant medical professionals receive appropriate and up-to-date information about Alzheimer associations. It may be necessary to work in close collaboration with the State and/or professional medical bodies/associations in order to achieve this goal.
8. Attempts should be made to provide comprehensive information in such a way as to maximise the ability of the person with dementia to understand. Attention should be paid to any possible difficulty understanding, retaining information and communicating, as well as the person’s level of education, reasoning capacity, current understanding of dementia and cultural background.
9. Medical professionals should be kept updated on recent developments in the treatment of dementia and receive training in the disclosure of the diagnosis/breaking bad news.
10. The next of kin, partner and potential carers of the person with dementia should be informed of the diagnosis of dementia if they so request, provided that the person with dementia agrees to this and does not, or did not previously, request that they should not be informed. In fact, health care professionals should encourage people with dementia to involve relatives and close friends in the disclosure procedure.
11. Nevertheless, a clear refusal by the person with dementia to disclose the diagnosis to any third party should be respected regardless of the extent of incapacity, unless it is clear that this would not be in the best interests of the person with dementia.
12. Disclosure in such cases should be done on a need to know basis i.e. to enable those concerned to care effectively for the person with dementia.
13. People who are informed of someone else’s diagnosis of dementia in connection with their work (either voluntary or paid) should be obliged to treat such information with confidentiality.
14. Medical professionals should not disclose the diagnosis to close relatives, friends and/or carers of the person with dementia as a means to avoid personal responsibility for disclosure of the diagnosis to the person with dementia.
15. Medical professionals who do not disclose the diagnosis of dementia to the patient concerned should be obliged to record this in the medical file of the person with dementia, along with a justification for this decision.
16. People with dementia have the right to request not to be informed of their diagnosis.
17. People with dementia have the right to choose who (if anyone) should be informed of the diagnosis on their behalf.
18. People with dementia have the right to request a second opinion.
19. The above-mentioned rights relating to the disclosure (or non-disclosure) of the diagnosis of dementia should be covered by national legislation.

_{[1] For further details, please refer to the “legal rights” section on our website}

_{[2] Alzheimer Europe (2006), Who cares? The state of dementia care in Europe}