Should you be told if you have Alzheimer's?

April 07, 1992|By New York Times News Service

You notice your memory is off a little. You pause in a conversation, unable to find the right word. It is harder to keep track of things. When asked about something you have just read, the answer escapes you.

No one comments on the memory lapses, but as they get worse and worse family members know that something is wrong.

Eventually they insist you visit a doctor. But they tell the doctor they fear the diagnosis will be Alzheimer's disease.

From the outset, they insist that the doctor keep the diagnosis from you. This reticence is not uncommon. But now it is being openly questioned.

After years of increasing frankness between doctor and patient, Alzheimer's disease may be the last taboo. People who learned long ago to speak frankly about cancer, AIDS and a host of other medical problems still cannot bear to acknowledge that a relative has Alzheimer's or another dementia.

And the doctor may be willing to oblige. Few tasks are sadder than telling patients they have a fatal illness, and in many ways, the diagnosis of Alzheimer's disease is the most devastating of all.

Alzheimer's, whose cause is unknown, produces slowly progressive dementia and deterioration of the brain. It affects an estimated 2 million Americans.

It has become a leading cause of death among Americans 65 years and older, though doctors sometimes omit it from death certificates.

Alzheimer's is not only fatal, it robs people of fundamental things that make them human -- memory, personality and the ability to think.

Should doctors tell patients that they are in the early throes of Alzheimer's?

Many people reflexively say yes. But there are plenty who argue that the truth might cause more harm than good. These people fear that a patient aware enough to understand the diagnosis might commit suicide or suffer some other catastrophic reaction from learning the news.

Whether to tell Alzheimer's patients their diagnosis is a question that needs to be addressed more openly, Dr. Margaret A. Drickamer and Dr. Mark S. Lachs of Yale University said in the current issue of the New England Journal of Medicine.

Precise statistics are lacking on how often doctors tell patients they have Alzheimer's disease. There is no universal policy, because it can be difficult to diagnose, particularly in its early stages.

The case against telling an Alzheimer's patient the diagnosis, as outlined by the Yale doctors, hinges on the imprecision of current diagnostic tests and lack of effective therapy. A definitive diagnosis can be made only from an autopsy.

Because there is no specific blood or other test for Alzheimer's, the diagnosis is generally made by excluding other conditions and by eliciting information from the medical history and from psychological tests.

But psychological tests cannot precisely distinguish memory loss due to early Alzheimer's from normal aging and other problems.

Thus, in the early stages of Alzheimer's, doctors may be able to tell patients only that they have a possible or probable case of Alzheimer's. The diagnosis may become clear only with repeated examinations to discern progressive memory loss. But the course is often unpredictable.

By the time the diagnosis is clear, an Alzheimer's patient may no longer be able to comprehend the new information, making discussion almost futile.

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