Who should be told - why and how?

Avoidance is not a solution.
A diagnosis of Alzheimer's Disease can only be communicated after a thorough assessment that suggests it is the most likely diagnosis. The fact that it can never be proven should not be used to avoid conveying a diagnosis. Many doctors consider communicating the diagnosis of Alzheimer's Disease (or any progressive dementia) as one of the most difficult tasks that they have. They and/or family members are often uncertain how the person will react to the information. The question therefore arises as to whether a diagnosis of Alzheimer's Disease should be communicated to the person affected by the disease. Family dynamics often play a role in this issue. Some family members may not want the diagnosis communicated, while others do. Doctors often find themselves in the middle of such a conflict. As a result, people are often not told of their diagnosis, or have been told and are not directed to appropriate support services. This is not a desirable situation.

Acceptance of a diagnosis allows for planning.
The knowledge of the diagnosis will enable individuals and their families to better understand the current situation and the stages of this disease, and to plan for the future. It is important to address such issues such as personal and financial affairs as well as future health-care directives. It is equally important for individuals and families to be aware of the various support mechanisms available in their local area.

The process of communication is important.
Communicating the diagnosis should occur in a joint meeting with the affected person and family members as appropriate. It is probably best that this should occur in a formal setting - the family doctor's or specialist's office, or in a clinic setting. If a team of health-care professionals was involved in determining the diagnosis, some may wish to be included, but it is important to avoid crowd scenes. Where possible, the doctor who is closest to the individual and family should be the one to share the news of the diagnosis. When the diagnosis is communicated, there must be sufficient time for the clinician to answer questions and address concerns.

Not all information can be absorbed during the first meeting, so follow-up sessions are recommended to discuss the diagnosis further, and to talk about implications and the available support systems. Perhaps a written summary of the issues discussed during the communication of the diagnosis could be requested.

Victim and family responses to a diagnosis may vary.
While open and frank discussion of the diagnosis and its implications for the individual and the family is important, it is not necessarily easy. Responses vary. For some, there is relief that there is a medical explanation for changes in behaviour, memory and function. Others may greet the diagnosis with depression, anger or denial. For those with advanced dementia, the diagnosis and its implications may not even be understood.

Nevertheless such information is meaningful and necessary for family. Families often go through a cycle of adjustment which may include the following stages

1. Denial
2. Over-involvement
3. Anger
4. Guilt
5. Acceptance