Except in unusual circumstances, physicians and the care team should disclose the diagnosis to the individual with Alzheimer's disease because of the individual's moral and legal right to know. You may have to disclose the diagnosis to the families first in cases where the person with Alzheimer's may have difficulty understanding.

Disclosing the diagnosis early in the disease process allows the individual to maximize quality of life and play an active role in planning for the future. If you disclose the diagnosis after the dementia has advanced, it may no longer be meaningful to the affected individual.

If the individual is informed of the diagnosis early on, he or she can also be involved in communicating and planning for end-of-life decisions. These plans can apply to issues such as life-prolonging measures and consenting to participate in Alzheimer research and can be expressed through the preparation of advance directives.

You should arrange a joint meeting with the individual and the family members to disclose the diagnosis. Telling families the diagnosis is Alzheimer's can be difficult, since there is currently no promising prognosis for those affected. Because the initial meeting can be overwhelming, you may need to schedule a follow-up meeting to continue discussion of the diagnosis and available support services.

After disclosing the diagnosis, expect various responses from the individual and family, ranging from acceptance of what was suspected and relief at learning what is causing behavioral changes to denial or depression.

Consider the following before communicating the diagnosis:

• Gain an understanding of family dynamics and cultural values.
• When possible, include all of the professionals (nurses, social workers, psychologists, and others) involved in determining the diagnosis in the joint meeting to answer questions and provide specific recommendations.
• Allow sufficient time to answer questions from the individual and family. A follow-up meeting may need to be scheduled to continue discussion.
• Discuss how the disease might progress and agree upon a specific care plan that considers the person’s values and beliefs.
• Provide written educational materials and a list of available community resources, including the Alzheimer’s Association.

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The individual and family should understand the following key issues:

• Alzheimer's disease is not a normal part of aging, but a degenerative disease of the brain that results in impaired memory, thinking, and behavior.
• Alzheimer's disease affects every individual differently, so there is no exact way to determine how the disease will progress.
• While there is no cure for the disease, some of its symptoms can be treated by medications and behavioral approaches.
• Disclosure of the diagnosis allows the individual to maximize quality of life and be involved in planning future care decisions.
• Assistance is available from the Alzheimer's Association and other resources.

Throughout the diagnostic evaluation and treatment planning, you should involve the family and caregiver. As the disease progresses and patients become increasingly dependent on their caregivers, these individuals will become your primary source of information on the patient's daily mental and physical health. Finally, bear in mind that the primary caregiver and other members of the family ultimately will suffer from the stress that accompanies caregiving and need information and support, as well as attention to their own health needs.

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Progress is being made in research. One way to help that progress is by participating in clinical drug trials. To locate the clinical drug trials being conducted in New York City, call the New York City Chapter at 646.744.2900.

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