Edition: U.S. / Global

THE DOCTOR'S WORLD; Alzheimer's Dilemma: Whether to Tell People They Have the Disease

Published: April 7, 1992

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. You cannot remember someone's name. Sometimes you even forget where you are. After shopping, you do not remember where you parked. You misplace the keys. You forget to meet your spouse at the bank as planned. At tennis, you sometimes serve to the wrong court.

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 in making the appointment, 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 dementing disease.

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 two million Americans. It can occur at any age but strikes with increasing prevalence in old age. 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, but it robs people of one of the most 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 telling 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 terrible 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.

Early Alzheimer's usually involves only memory problems. Recall of recent events goes first. As the disease progresses, distant memory goes, too. Later, Alzheimer's can also involve physical deterioration. Walking, speaking and swallowing can be difficult. Incontinence is common. As Alzheimer's advances, people may wander aimlessly from home.

Because people with Alzheimer's have impaired memory and a strong tendency to deny their condition, doctors usually discuss the diagnosis with the patient and the family, separately as well as together.

This is when doctors practice the art of medicine, the humanistic side that involves sensitivity and discretion and that cannot be specified in textbooks. They judge personalities and family relationships and individualize what they say. And how much information can be successfully communicated depends in part on how far advanced Alzheimer's is when a patient first seeks medical care. Because patients often hide their condition, by the time family members notice something is wrong the disease may no longer be in the early stages.

Doctors who treat Alzheimer's say they have to deal with two principals: the patient and the family. And patients and families may be at odds with each other.

Some patients know something is wrong but hide it. Others voluntarily seek medical care on their own, demand to know the diagnosis, but are adamantly against telling their family.

Other patients are coerced into a visit to a doctor by family members who suspect the diagnosis of Alzheimer's, and they often have compelling arguments against telling their mother or father.

Some doctors say they usually specify Alzheimer's with families and in the medical records but often use some other phrase like "senile memory problem" in talking to patients. So confusion can result because doctors' notes in the records may include observations that patients and families say they were not told about.

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.

It is common for people as they move into their 40's and beyond to fail to find the exact words in conversation and to become more forgetful than when they were younger.