By Chris Woolston CONSUMER HEALTH INTERACTIVEBelow: • Coping with Alzheimer's • Medical science fights back
Alzheimer's disease is like a cat burglar. It slips into a person's life without making a sound, and soon treasured possessions start disappearing: memory, personality, independence. For many years, even the top medical detectives in the country were baffled by such robbery. Doctors knew that Alzheimer's filled a person's brain with tangled strings of protein and sticky clumps of plaque, but nobody had a clue where this clutter came from. Worse, nobody knew how to help the victims. In the bad old days -- which weren't that long ago -- people with Alzheimer's were often locked away in asylums and controlled with heavy sedatives. Alzheimer's is still a dreadful, devastating condition, but the outlook for patients and their families is brighter than before. Thanks to a new understanding of the emotions and needs of Alzheimer's patients, families can call on many tried-and-true techniques for keeping loved ones comfortable. With support, most patients can face the disease for many years before having to move to a nursing home; some are able to remain with their families to the end. Recent medical breakthroughs offer even more cause for hope. Researchers are beginning to understand exactly how Alzheimer's kills brain cells, and every new insight brings them closer to finding a cure for the terrifying affliction. Their work has already brought a payoff: Doctors can now prescribe drugs to slow down the disease, and large-scale studies are putting promising new treatments to the test. Scientists are looking at everything from antioxidants, estrogen, anti-inflammatory drugs, cholesterol-lowering drugs, and nerve-growth factors as possible elements in protecting against the disease. Indeed, the need for a cure has never been greater. Roughly four and a half million Americans suffer from Alzheimer's, and that toll could grow dramatically as the nation ages. If it can't be stopped, over 13 million people are expected to be living with the disease in 2050. Bill Thies, the Alzheimer's Association's vice president of medical and scientific affairs, puts it this way: "What we are facing is an epidemic of major proportions." Currently, it's impossible to say who will develop Alzheimer's and who will be spared. Some people inherit genes that make them vulnerable to the disease, particularly in cases of early-onset Alzheimer's. But in most cases, a single family member is diagnosed with the disease late in life. Coping with Alzheimer's The first step to coping with Alzheimer's disease is knowing what to expect. Every case is different, but the disease tends to follow a predictable downward spiral. In the first stage, which may last two to four years, Alzheimer's is subtle and easily overlooked. In the beginning, people may have trouble coming up with the names of acquaintances or of common objects such as bread or sugar. They may put keys or an iron in odd places, like the refrigerator, and be unable to remember how they got there. Friends and relatives may notice small changes in mood, perhaps a loss of interest in favorite activities or unusually high levels of anxiety. Later, the disease will start interfering with everyday life. People may start losing things and making unusual mistakes at home or on the job. Pretty soon, undone chores, unpaid bills, and missed appointments start to pile up. The patient may notice a problem, but he or she will probably deny anything is wrong. In the middle stage of the disease -- which may go on seven or more years -- memory loss and confusion begin to take over. Patients may begin to have trouble recognizing family members or remembering events of the day before. They may ask the same question over and over again, never quite registering the answer. They may wander the house in the middle of the night, perhaps calling for a parent who died decades ago. Simple chores like cooking, washing clothes, and even bathing become impossible. Many patients eventually lose control over bladder and bowels during this stage. In the last stage of Alzheimer's, patients lose all touch with reality. They may not recognize anybody at all, or even their own face in the mirror. They will need help for even the simplest tasks, such as combing their hair. Eventually, they will be unable to walk or talk. The average lifespan for someone with Alzheimer's is 8 years from the time symptoms first appear, though some people may live up to 20 years with the disease. Even in this stage, however, Alzheimer's patients still respond to kindness and love. "Before AD, my husband was too macho to submit willingly to his sons' physical affection," writes Lela Knox Shanks in her memoir Your Name Is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. "Now he is more accepting; he smiles and obviously enjoys the touching and affection... Clearly, a loss of cognition is not a loss of one's feelings or one's humanity." Medical science fights back At every stage, Alzheimer's poses enormous challenges to family members. And at every stage, family members can meet those challenges with patience and compassion. Many excellent resources, including the national Alzheimer's Association, caregiver support groups, and books such as Alzheimer's: A Caregiver's Guide and Sourcebook, At the Heart of Alzheimer's, and The 36-Hour Day, help caregivers understand the disease and support their loved ones. As Alzheimer's progresses, a caring family physician will be an invaluable ally. First, he or she can determine if the diagnosis is more likely to be Alzheimer's rather than some of the other conditions that cause dementia or dementia-like symptoms. In addition to providing advice and guidance, he or she can prescribe medications to slow down a patient's decline or ease his depression or anxiety. For instance, the drug galantamine (Razadyne), approved by the Food and Drug Administration (FDA) in 2001, has been shown to increase memory and thinking skills in some Alzheimer's patients, as well as delay the progression of the disease. Other drugs like donepezil (Aricept) and rivastigmine (Exelon) can help some patients recapture some of their lost mental capacity, boosting memory and helping them perform the daily tasks of living. For patients with severe Alzheimer's, the new drug memantine (Namenda), approved by the FDA in 2003, is the first drug shown to slow progression of the disease in advanced-stage patients. These drugs don't work for all people, however, and they require monitoring by a physician. Unfortunately, even the modest improvements brought on by drugs don't last, and in most cases Alzheimer's eventually continues its relentless march. In the future, patients and their families may be able to buy precious time with products already in their medicine cabinet. Recent studies have suggested that large amounts of vitamin E and regular doses of common nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen, or naproxen may help protect the brain and slow the course of Alzheimer's. Hormone replacement therapy in post-menopausal women may also delay the onset of the disease, as estrogen is suspected to offer some protection against it. Some recent studies have also found that ginkgo biloba can slow the course of early-stage Alzheimer's by improving memory. But the studies on NSAIDs and other possible treatments are not definitive, and the optimism with which these findings were announced has faded considerably. Moreover, these treatments carry risks -- large doses of vitamin E thin the blood and can lead to serious bleeding; common NSAIDS can cause ulcers and other complications; ginkgo can clash with blood-thinning medication, and a 2002 study found that women over age 65 who took combined estrogen/progestin therapy increased their risk of developing dementia. So the message is clear -- don't try any therapy without your doctor's supervision. All of these therapies are important advances -- and they may one day seem as crude as the overuse of medicinal leeches. New discoveries are constantly fueling the hope that Alzheimer's will soon become as treatable as hypertension or diabetes. Researchers are learning more about the changes that occur in the brain of an Alzheimer's patient using brain imaging technology like magnetic resonance imaging (MRI) and positron emission tomography (PET). These techniques, along with certain biological markers and highly developed tests of memory and language skills, may help investigators identify people at risk for Alzheimer's. They may also make it easier for doctors to identify how well different treatments are working. As researchers continue to unravel the different genes, proteins, and enzymes that drive Alzheimer's, talk of a cure no longer seems too far-fetched. For now, nobody knows how or when Alzheimer's will finally be defeated. But one thing is certain: Such a victory can never come too soon. -- Chris Woolston, M.S., is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive, and was a staff writer at Hippocrates, a magazine for physicians. He has also covered science issues for Time Inc. Health, WebMD, and the Chronicle of Higher Education. His reporting on occupational health earned him an award from the Northern California Society of Professional Journalists.
Further Resources Alzheimer's Association This Web site has resources for people living with Alzheimer's, their caregivers, and professionals who want to keep up with the latest medical advances. Family Caregiver Alliance This site has information on services, research, and education for those caring for loved ones with chronic health conditions.
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National Institute on Aging. Alzheimer's Disease: Unraveling the Mystery. The Search for New Treatments. http://www.nia.nih.gov/Alzheimers/Publications/UnravelingTheMystery/Part2/subpage03.htm
Reviewed by Patrick Irvine, MD, a noted geriatrician and pharmacologist who lives in Minneapolis, MN.
First published July 25, 2000
Last updated March 18, 2008
Copyright © 2000 Consumer Health Interactive
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