And Now, the Alzheimer’s ‘Cocktail’
Shellie Brassler, 47, has a simple goal: to reach age 49 and be able to remember the birthday party that her friends and family will throw for her. Her father wasn’t so lucky. He was a victim of Alzheimer’s disease at 49, passing the next 24 years of his life in a painful, blank state.
“I take a handful of pills. I religiously take them and hope and pray it makes a difference,” said Brassler, a resident of Geneva, a suburb of Orlando, Fla.
She is among a growing number of Americans who hope to ward off Alzheimer’s disease by taking preventive “cocktails,” combinations of vitamins, estrogen and anti-inflammatory drugs like Advil.
Refusing to wait for hard evidence from the deliberate pace of drug trials or for the scientific breakthrough that might come from gene therapy, people like Brassler are seizing on every hopeful preliminary finding to write their own prescriptions for keeping memories intact.
Doctors are sympathetic to their sense of urgency but concerned about the potential perils of self-medication. Vitamin E is a frequent ingredient for those hoping to ward off Alzheimer’s, and doctors see little risk--though no sure cure--in its use. But anti-inflammatory drugs can cause ulcers, and estrogen can raise the risk of cancer.
“The safe answer is that there is insufficient evidence to make a recommendation,” said Dr. Jeffrey Cummings, who runs the Alzheimer’s research and treatment unit at UCLA.
With the majority of baby boomers now in their 40s and 50s, the trend toward self-doctoring is in full swing. Already, their demands have made this an age of 10,000 Web sites and Internet chat rooms on health, libraries filled with self-help books, and television commercials urging consumers to pester their doctors for particular drugs.
There is a special temptation to self-medicate as a preventive strategy against Alzheimer’s, because the devastating disease is so mysterious. It has no known cure and may not strike for decades. It destroys in stages the memory of the victim, the ability to think and live independently and wreaks havoc on family members and loved ones trying to care for the patient. The physical body can last for years, hale and hearty, even after the mind is gone.
Unlike heart disease, where diet and exercise are proven preventatives, there is no way to stop Alzheimer’s. So those who fear its deadly impact are seizing on a fistful of vitamins and drugs, taken in hopes of beating the odds.
For those in families where Alzheimer’s strikes early--in the 30s, 40s and 50s--dooming victims to decades of additional life without memory or cognition, the urge to do something--anything--is even greater.
This “early onset” group, families such as Shellie Brassler’s, accounts for just 1% or 2% of everyone who gets Alzheimer’s, but the impact is particularly devastating because it happens at an early age, and many members of a family can become victims.
Perhaps the families of “early onset victims” are like the advance patrols of an army, venturing into dangerous territory years before large numbers of their baby boom contemporaries will witness the disease’s devastating progression or feel the burden of being caregivers.
Alzheimer’s has become a distressingly frequent plague as more and more people live to advanced old age. The incidence of the disease is just 1% at age 60, but it doubles every five years. And by age 85, as much as 40% of the population may suffer from Alzheimer’s or another form of dementia.
There are about 4 million people with Alzheimer’s disease and other memory-destroying dementias in today’s U.S. population, which includes 34 million people over the age of 65.
Alzheimer’s Population Could Swell to 14 Million
With 76 million Americans in the baby boom generation--those born in the years 1946 through 1964--the incidence of Alzheimer’s could explode as better health care and new technology swells the ranks of those living to 80 and beyond. The Alzheimer’s population could reach 14 million in the next 30 or 40 years, experts say.
The Alzheimer’s cocktail is a joking phrase among the advocates rather than a literal description of what they consume.
“There is no blue martini-looking drink,” said Brassler, an activist who founded and directs the Alzheimer Resource Center in Orlando, which provides advice and counseling for families and caregivers.
Instead of a unique cocktail, each person has a personal version of pills, compounds and extracts he or she hopes will ward off the dread disease. There is a broad selection: vitamins (A, C, and E), anti-inflammatory products often taken by arthritis victims (aspirin and ibuprofen), and ginkgo biloba, an herbal supplement. In addition, women can take estrogen, a hormone usually prescribed for menopausal women to prevent osteoporosis and heart disease.
Brassler takes daily doses of vitamins A, C and E and estrogen as part of a hormone replacement regimen.
“I have a doctor who supports what I am doing,” she said. “He has a tendency to lean a bit towards holistic methods, anyway.” The doctor has cautioned her about her vitamin E megadose, which totals 1,200 units daily.
To doctors, a mixture of over-the-counter compounds and prescription drugs is cause for concern.
“We know that exercising, eating a proper diet and refraining from smoking can reduce the risk of heart disease and may reduce the risk of some cancers,” said Dr. Victor Henderson, professor of neurology, gerontology and psychology at USC. “There may be certain things one could do for Alzheimer’s, but we aren’t smart enough to know what they are yet.”
Scientists are racing to find out. Studies are underway on several fronts to pin down early signs of promise.
Dr. Leon Thal, head of the department of neuroscience at UC San Diego, is running a major trial to see whether vitamin E can slow the deterioration of people with mild memory loss and prevent them from slipping into Alzheimer’s.
Some 700 patients with early cognitive decline are being recruited. These are people who manage well in their daily lives but are becoming forgetful and having difficulty concentrating. But they are not yet in the early stages of Alzheimer’s, which is typically marked by people having trouble handling their checkbook and remembering directions when they drive. Typically, about 15% of those with mild cognitive decline will deteriorate into cases of full-blown Alzheimer’s.
Thal, backed by funding from the National Institute on Aging, wants to prove that mental decline can be arrested in people before they tumble down the slope of memory loss into Alzheimer’s. If he finds something that works conclusively, it would be a major step toward slowing the onset of the disease so that elderly patients die of other causes before Alzheimer’s sets in. The typical new patient is over 80. A treatment successful at delaying Alzheimer’s onset for five years could cut the number of victims by more than 30%.
In the study, just getting underway, a third of the participants will get vitamin E. A third will get Aricept, a commonly used drug that has had some success in slowing memory loss for six months or a year in Alzheimer’s patients. And a third will receive a placebo, a neutral compound without any medical properties.
In some prior studies, vitamin E has slowed the pace at which Alzheimer’s patients lose their ability to remember things. But Thal emphasizes that there is no scientific proof that vitamin E--or anything else--is a preventive.
Certain Drugs Might Just Seem Like the Answer
Other research involving patients with Alzheimer’s who were taking anti-inflammatory drugs, such as aspirin or ibuprofen, showed a slowdown in the rate of mental decay. But it might not be the drugs that helped, scientists caution. Perhaps there is something genetic in those prone to arthritis that provides some temporary natural protection.
Estrogen already is being studied as part of the massive Women’s Health Initiative, the biggest systematic study ever conducted on the health of American women. Women participating in the federally financed study will be asked questions to measure their mental functioning, and to detect the incidence of incipient Alzheimer’s.
A study of ginkgo biloba showed a number of patients were marginally helped, but it has not yet been tested on a large scale.
Vitamin E the Only Pill Without Serious Risks?
In the meantime, doctors are in general agreement that, of all the pills one could pop in a self-medicating fight against Alzheimer’s, vitamin E is the only one without serious health risks.
Vitamin E is “very, very big for caregivers,” said John Gorman, who runs the Alzheimer’s Aid Society of Northern California, based in Sacramento. Among the 15,000 people on his mailing list, almost all the adult children of Alzheimer’s victims take vitamin E. So does his wife, Bea, whose mother, two brothers and two sisters got the disease in their 40s or 50s.
But the medical profession discourages use of herbs or vitamins other than vitamin E.
Too much vitamin A can stain the skin orange, cause hair loss, mouth sores, headaches and liver damage. Excess C can cause diarrhea and gastric irritation and kidney stones.
Anti-inflammatory drugs can cause intestinal bleeding and ulcers. And because ginkgo biloba isn’t regulated by the Food and Drug Administration, consumers can’t be sure of the purity or consistency of a particular batch.
In the meantime, doctors say, a bountiful supply of drugs is under development, and an explosion of biological and genetic knowledge offers promise for the future.
“We know a whole lot more than we did five or 10 years ago,” said Dr. Thomas Bird, professor of neurology at the University of Washington.
But he urges caution for those who are impatient, want to act now and are willing to spend large amounts of money on vitamins and drugs.
“Consider the costs . . . and be careful of potential side effects,” he said.
But that won’t deter Janet Walsh, whose father and three aunts were struck down with Alzheimer’s. When a genetic test at age 40 revealed she has a high likelihood of developing the disease, she was severely depressed for a month.
“Then I said to myself, ‘Hello, let’s fight this thing and try to beat it,’ ” she said. Now, at 43, she runs the Long Island Alzheimer’s Foundation.
She also takes vitamins, and she tried anti-inflammatory drugs but stopped after getting indigestion. Walsh eagerly reads the scientific journals, scans research papers and talks to physicians and scientists in search of other things that might work, to guarantee someday that her own children will never get the disease.
“I want to find out if there is a preventive cocktail that will work,” she said. “I’m not going to sit back and just wait.”
