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From the Current Issue

Should Patients Be Told They Have Alzheimer’s Disease?
Some are glad to know the cause of their memory problems; others can’t accept it.

Most Americans expect that their doctor will inform them of all medical findings and that they will be able to make their own decisions about their health care. Alzheimer’s disease, however, presents two unique problems in informing patients that they have a disease. First, many patients are unaware that they have a memory problem and, even when informed, are not able to understand or accept this fact. Second, since memory is impaired in all patients with Alzheimer’s disease, they often cannot remember the medical information once they have been told.

What, then, should doctors and caregivers tell patients with Alzheimer’s disease? The American Medical Association recommends telling a person that he or she has the disease “if at all possible”—which means taking into account the degree of remaining cognitive function. A recent study, however, indicates that doctors are far more likely to give the diagnosis to a family member than to the person with Alzheimer’s disease. Researchers surveyed 57 family members of people with dementia and found that 93% had been given the diagnosis by the doctor, but only 49% of patients had been told. Of the patients who were told, 46% took the news well, and 51% reacted poorly. However, family members still overwhelmingly thought that a person diagnosed with dementia should be told the truth (72%).

Peter V. Rabins, M.D., M.P.H, author of this White Paper, believes in full disclosure. “Since it is customary and desirable to be honest with patients regarding their health status,” he says, “I believe it appropriate to indicate to everyone, at the time of assessment, that a problem with memory is present.”

What To Expect

Some patients respond by denying the problem (“There’s nothing wrong with my memory” or “I might have a little trouble, but I’m like everyone else my age”). If a patient reacts in this manner, it might be best to drop the issue because such remarks imply that individuals are unable to appreciate the fact that they have a memory problem, often because the disease has impaired their capacity to perceive that such a problem exists.

If the person resists accepting the fact that he or she has Alzheimer’s disease, there is little benefit in forcing the issue, says Dr. Rabins. “The reason most patients are unaware of the fact that they have Alzheimer’s disease is an intrinsic part of the disease itself—that is, the disease in some way blocks an individual’s ability to understand or appreciate any mental deficits,” he points out.

On the other hand, some patients benefit from being informed. Many do not react to the news by giving up; instead, a clear diagnosis can actually be reassuring—the patient knows that a physical illness is causing the memory problems. The amount of information that patients can comprehend about their diagnosis and prognosis depends on the stage of their illness. But just putting a name to their problem is helpful for many people.

If a person has not written a will or executed an advance directive, for example, then he or she can take this opportunity to do so. Because cognitive decline is inevitable with Alzheimer’s disease, it is important that these tasks be done as early as possible in the illness. Other business, financial, or personal issues can also be addressed while the person with Alzheimer’s disease still has the capacity to make informed decisions. In addition, people with mild Alzheimer’s can still make valuable contributions: For example, herb grower Thomas DeBaggio, diagnosed with Alzheimer’s at age 57, responded to his diagnosis by writing two memoirs, including the well-received Losing My Mind: An Intimate Look at Life with Alzheimer’s.

Also at issue is access to clinical trials of investigational treatments. Although family members can give consent for people with dementia, it is preferable for the person to give this consent in advance.

Having the Conversation

If you are a family member who has been told of your loved one’s diagnosis, you need to decide whether and how to share this news with the patient. If you decide to tell the person about the diagnosis, take some time to plan your approach and to anticipate the person’s reactions:

• Choose your setting carefully. A conference, consisting of you, other caregivers, the doctor, and the patient may be helpful for some people; others may respond better to a one-on-one conversation. If you fear the patient might direct anger at you, ask his or her doctor to deliver the diagnosis.

• Confusion, anger, and denial are common reactions. If they occur, don’t try to argue with or convince the person—further detailed discussion likely will not be helpful.

• Don’t be surprised if the person already suspects that he or she has Alzheimer’s disease.

• Provide as much information as the patient is able to understand, especially about symptoms, medications, and upcoming lifestyle changes.

• Watch for signs of sadness, anger, frustration, or anxiety, and let the patient know that these are understandable feelings and you are open to discussing his or her needs and emotions.

• Finally, reassure the person that you, the doctor, and other caregivers will continue to provide help and support.


The Memory Bulletin is a quarterly publication that presents the latest information available to help you make informed decisions to prevent memory loss and take charge of cognitive health.
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The Memory White Paper from The Johns Hopkins White Papers series is an annual, in-depth report written by Hopkins physicians.



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