If you're terrified of the disease -- or it runs in your family -- you might want to get tested. Here's why.
By Gina Shaw
July 9, 2000 -- In the fall of 1998, Barbara and Les Dennis sat at the table in their Chicago home, deep in the throes of retirement planning. Barbara had printed out a spreadsheet showing their sources of income as well as the bills they'd have to pay. Les, a college professor in his early 60s, studied it and then tossed it back on the table. "It doesn't make any sense," he told her. Figuring that Les' poor eyesight was at fault, Barbara redid the spreadsheet, using larger and bolder type, and patiently began to explain the figures. But Les exploded in frustration: "You're just trying to figure out how you can save all the money until I die!"
"That's when I knew something was really wrong," Barbara says. Les wasn't the type to erupt in anger, he wasn't given to irrational fears -- and as a professor at Loyola University, he certainly wasn't a man to get confused over a column of numbers.
One month later, even Les agreed that something was wrong. He underwent testing for depression and anxiety. His brain was scanned for signs of a stroke. Finally, he took a battery of cognitive tests that gave him the diagnosis he dreaded: early Alzheimer's.
Just a few years ago, most of the estimated 4 million Americans with Alzheimer's weren't diagnosed until late in the disease, after they'd started getting lost on the way to the store or forgetting their grandchildren's names. But advances in early detection -- a primary theme at the World Alzheimer's Congress 2000 being held in Washington, D.C., from July 9-18 -- now make it possible for some to know that their brain is slowly deteriorating years before they fully lose their ability to think. Magnetic resonance imaging (MRI) can identify subtle changes in structures of the brain that relate to memory. Cognitive tests now can distinguish early Alzheimer's from minor memory lapses that come with age.
Looking More Closely at the Brain
Leading researchers say there are good reasons to seek early detection: People have time to plan, to try drug therapy, and to live their last good years fully. Yet such knowledge comes at a high price: With no cure yet in sight, people like Les Dennis must live with the awareness that they are gradually slipping into dementia.
"We're becoming aware that Alzheimer's doesn't start overnight and could be preceded by years of a vulnerable state," says Sandra Weintraub, PhD, director of neuropsychology at Northwestern University's Cognitive Neurology and Alzheimer's Disease Center. Only 3% of Americans are diagnosed with Alzheimer's between the ages of 65 and 74. But by age 85, a stunning 47% have the disease, according to the National Institute on Aging. By detecting Alzheimer's at the earliest point during those critical years, she says people like Les Dennis benefit from a "window of warning" -- time they can use to plan the care they'll need, to settle financial matters, or simply do the things they love the most.
Many of the tests are not new. Rather, in recent years researchers have grown more skilled at using them. One of the most reliable is the California Verbal Learning Test, which assesses skills such as verbal memory and problem solving.
"I'd tell you a story and ask you to tell it back to me immediately, then wait half an hour and ask you to tell it to me again," Weintraub says. Each of several such tasks taps a different brain system, and the combined results home in on the diagnosis of Alzheimer's with ever-increasing accuracy.
These cognitive tests are about 90% accurate in identifying people who have very mild dementia," says David Salmon, PhD, a professor in residence in the department of neurosciences at the University of California, San Diego.
New advances in MRI testing also help detect early onset of Alzheimer's and may someday be able to predict the disease before a person ever experiences that first subtle confusion. In people with early Alzheimer's, scientists have found that the hippocampus and the entorhinal cortex -- both essential parts of our brains' memory system -- show marked reductions in size and volume. In a study published in the April issue of the journal Annals of Neurology, researchers in Boston compared MRI scans of elderly people and found those that developed Alzheimer's disease showed significant changes in their brain scans over three years.
"This approach is not ready to be used clinically, but it is very encouraging and theoretically does provide a way to predict who will develop Alzheimer's," says Marilyn S. Albert, PhD, one of the study authors.
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.
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."
"At first," Les says, "I was wondering all the time, 'How many days is it going to be?' But the greatest single thing to remember is that you can have a fairly decent life for a fair amount of time. Early testing lets you have that."
Gina Shaw is a Washington-based freelance writer who writes frequently about health and medicine.
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