Pandora's Box

But since there's no cure, do you really want to know if you have early Alzheimer's?

Ask Les Dennis that question today, and he'll tell you he's glad he knows.

He didn't feel that way at first. Les had pushed away the nagging fear that something was wrong for about a year before he was diagnosed. He would often have to return to his office at Loyola University four or five times, retrieving papers or books he'd forgotten to take to his classroom. "I just thought I must be really dumb," Les says ruefully. He didn't tell Barbara.

But a month after the spreadsheet incident, Les couldn't remember how to write a check, and he finally broke down. "I need help," he said. Test after test and doctor after doctor finally led them to the Neurobehavior and Memory Health Service at Northwestern University, where he was diagnosed with Alzheimer's.

"Please, let it be something else, anything else," Les remembers thinking. "It was horrible. Every time I thought about Ronald Reagan, I'd just go into complete terror." He sank into a deep depression that lasted a couple of months. He would sleep around the clock -- or he'd find himself unable to sleep, wandering around the house at two in the morning. Barbara battled anxiety and stress; she recalls reading that spouses of Alzheimer's patients are more likely to get sick, have a heart attack, or be hospitalized. Sometimes they wondered if it would be better not to know.

Making Decisions

But after dealing with the shock and denial of the initial diagnosis, the couple joined a support group and began learning that knowledge can, indeed, be power. They talked about choosing an assisted-living center for the future and looked at several facilities. They set up durable powers of attorney and were able to involve their two grown sons in the decisions. Michael, a research psychologist, scoured the Merck Manual for information, and Chuck, an attorney, weighed in on their legal options. And Les made clear his feelings about the end of his life. "My family understands that I don't want to be on any kind of life support," he says. "That's the most important thing."

Les began taking 5 milligrams a day of Aricept, a drug that can delay the progression of Alzheimer's by several months to two years in some of the people who take it. He and Barbara watch for news of other drugs that may affect the disease more dramatically: As many as 60 new drugs designed to prevent or slow the progression of Alzheimer's are now in various stages of development. One such drug, galantamine, which researchers think could help improve cognitive performance, is under FDA review. And the National Institute on Aging is in the midst of a nationwide study examining whether Aricept or vitamin E may be useful in preventing a condition called mild cognitive impairment (MCI) from developing into Alzheimer's.

Eventually, Les and Barbara Dennis realized that this relatively early diagnosis of Alzheimer's had given them a priceless gift: time. While Les can't drive any more and has trouble dealing with all the options on his personal computer, he still has the intellect that built a career as a professor, lobbyist, and international consultant in labor management. He can still hold up his end of a lively conversation, and he and Barbara are planning a trip to Prague. They'll travel the Elbe River to Potsdam with three other couples they've known since high school. Les can tick off the names of the dams they'll traverse and the landmarks they'll pass with such acuity that a listener would never know he is a man with Alzheimer's. After that trip, they're planning a jaunt to the one continent Les has never visited: Antarctica.

Living With Limits

He senses his limitations, but they have yet to keep him at home. "Barbara is doing most of the planning for the trips now, where I always did before," Les says. "I can't contain all the material now. But I can suggest things and say, 'This option looks really good.' "

His doctor, Weintraub, says she sees more and more patients like Les -- people in their fifties and sixties who come to the center anxious because they're forgetting things and having other memory problems. Some of them may have had a parent or sibling with Alzheimer's. And while the diagnosis is always brutal, she says most of her patients come to appreciate the early warning.

"It's very important to know these things at a time when you're competent to think about how you want your life to go on," Weintraub says. Do you want to sell that big house and get an apartment or move into an assisted living center? Most of her patients also find strength and solace in support groups. "In the past, by the time you had the diagnosis you were so impaired it would be unlikely you could benefit from a support group," she says. "Now, with early detection, people are really able to participate."

It's important to keep in mind, Weintraub says, that research into Alzheimer's is progressing rapidly. "Although Alzheimer's is not curable now, it is treatable." And while the average lifespan of a patient with Alzheimer's is eight years, some can live for up to 20 years with the disease -- possibly long enough to benefit from new drugs.

In addition to several drugs, scientists are also experimenting with an Alzheimer's "vaccine" that would forestall the disease by reducing levels of an abnormal protein, amyloid, which is higher in people with Alzheimer's. "It wouldn't surprise me if in the next five years there would be therapies that would really slow the progression of the disease," says Salmon.

For Les and Barbara Dennis, the early diagnosis forced them to consider the end of their lives and gave them the opportunity to shape their time as best they can. "We have been able to have fun, knowing that it may not last a long time," says Barbara. "We've been able to share feelings and heartfelt desires about dying with dignity. We've been able to explain to the older grandchildren that there's something wrong with Papa's brain, and so if he doesn't understand when you ask him something, slow down and ask again."

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