When a loved one has Alzheimer's disease, time takes on new significance. Every day that he or she can hold onto old memories or stay out of a nursing home becomes a gift. Thanks to new treatments and a growing understanding of the disease, families and patients can enjoy more of those gifts than ever before. For some patients, new drugs can delay the advance of the disease for months, or even years. Meanwhile, families everywhere are learning how to keep their loved ones as healthy as possible for as long as possible. It's called buying time, and it's hard to think of a better investment.
A slow road
The progression of Alzheimer's disease is usually slow, but ultimately devastating. For reasons that have so far eluded scientists, the brain of a person with Alzheimer's gradually develops strange deposits of tangles (twisted protein fibers inside brain cells, or neurons) and sticky plaques outside those cells. Studies now suggest that the disease is caused by the shrinkage and death of brain cells and their synapses, rather than the actual plaques and tangles. The latest thinking is that the abnormal processing of a normally harmless protein called beta-amyloid triggers a set of events that causes the neurons to shrink and die.
These changes in the brain soon lead to subtle changes in the person. Long before receiving the diagnosis of Alzheimer's disease, a person may feel his memory is slipping away. He may stumble over familiar words, miss appointments, or lose things more often than usual. Within a few years, someone with Alzheimer's may get lost in familiar neighborhoods. Eventually, even simple tasks such as cooking and dressing normally become a challenge. By this time, many friends and family members aren't surprised when a doctor finally makes the diagnosis of Alzheimer's disease.
As the years go by, Alzheimer's disease will tighten its grip. Patients start to forget basic facts, from the current year to the names of their siblings. No matter what course the disease follows, patients and their families have the same goal: Hold on to the good times for as long as possible. The longer a person can do things for himself, the longer he can enjoy his favorite activities, and the longer he can maintain some independence while living with his family, the better it is for everyone.
Exercise Rx for Alzheimer's
In late 2010, scientists from the University of Pittsburgh released a study that suggested walking about five miles a week may help slow the progression of Alzheimer's disease and a condition called Mild Cognitive Impairment (MCI), which often precedes AD.
"We found that walking five miles per week protects the brain structure over 10 years in people with Alzheimer's and MCI, especially in areas of the brain's key memory and learning centers," said Cyrus Raji, of the university's department of radiology, in a news release. "We also found that these people had a slower decline in memory loss over five years."
Dr. Raji added that unfortunately, walking is not a cure for the disease. "But walking can improve your brain's resistance to the disease and reduce memory loss over time," he said.
Indeed, even healthy people without any symptoms of mental decline may be able to help ward off Alzheimer's disease by walking a similar amount each week, although the research showed they needed to walk a little more: about six miles weekly.
The findings were preliminary, and Dr. Robert Friedland, chairman of the neurology department at the University of Louisville's School of Medicine in Kentucky, told reporters that it was important not to assume walking was the cause of reduced risk. Instead, it could be that people with Alzheimer's simply tend to walk less. That said, he noted there were many reasons walking might be protective against Alzheimer's, including improving blood flow to the brain.
Indeed, some of the best therapies around can't top good old-fashioned exercise, said Eric Larson, MD, a professor of medicine at the University of Washington in Seattle. A simple 30-minute walk around the neighborhood every day (with a caregiver, of course) can help slow the "downward spiral" of Alzheimer's in other ways, he said.
In a study of Alzheimer's patients published in the Journal of the American Medical Association, Larson and colleagues found that a three-month exercise program improved physical functioning, eased depression, and helped keep people out of nursing homes. Larson has seen similar results many times in his practice, and he knows how much these improvements can mean to patients and their families. Exercise greatly prolongs the time that patients can get out of bed by themselves, he said. It also helps them burn the nervous energy that could otherwise lead to nighttime wandering and other troubling behaviors. As a result, patients sleep better at night, which is a triumph for the whole family.
Larson said any type of walking will do the trick, whether it's a lap around the neighborhood or 30 minutes on a treadmill. Still, he says, it's hard to beat a stroll outdoors. The patient gets some fresh air and a chance to get reacquainted with the surroundings, and, just as important, caregivers (who often have trouble getting exercise themselves) get a chance to be physically active, too. A daily walk, he said, can also help undo some of the stress of caregiving.
Other studies have found that taking 3,000 steps a day can slow the advance of Alzheimer's or help hold it at bay. So with your doctor's blessing, walk with your loved one up to five miles a week, if possible (and try to work in that extra mile per week for yourself).
Time in a pill
For some patients, buying time may be as easy as taking a pill. A class of drugs known as cholinesterase inhibitors -- including Aricept (donepezil), Exelon (rivastigmine), and Razadyne (galantamine) -- can delay the progression of Alzheimer's for months or, in a few cases, years, says Vincent DeLaGarza, M.D., an associate professor and author of a comprehensive article on Alzheimer's medications that appeared in the American Family Physician. The first drug of this type was called Cognex (tacrine), and had the potential to cause liver damage, so it has been largely supplanted by the newer drugs in the class, which have a better safety record.
Cholinesterase inhibitors were developed after scientists found that people with Alzheimer's have lower levels of an important neurotransmitter in their brains (acetylcholine) than people without the disease. The medications are designed to keep nerve impulses moving by preserving more acetylcholine, which is crucial to memory; they do so by inhibiting an enzyme (acetylcholinesterase) that causes the neurotransmitter to break down.
Studies suggest that fewer than half of all people in the early stages of Alzheimer's respond to the drugs, but they may prove important for those who do by delaying the symptoms of mental decline for several months, or even a year or two, for example. The patient may be able to recall recent events and to take care of himself and household tasks more easily; this may correspond to an improvement in mood as well. Nobody knows if the drugs actually affect the buildup of proteins in the brain, but they can slow symptoms of mental decline, at least in the patients who are lucky enough to respond. Side effects can include nausea, vomiting and diarrhea.
And the sooner treatment begins, the better. Researchers at the 9th International Conference on Alzheimer's Disease and Related Disorders announced that Aricept could delay the progression of Mild Cognitive Disorder to Alzheimer's by as much as 18 months. Another study of 565 patients with early Alzheimer's disease found that a two-year course of Aricept slowed symptoms of mental decline for some patients.
With years' of research without a new, viable drug to stop the disease, some experts at the Alzheimer's Association were cheered by Biogen's development of the Alzheimer's disease drug aducanumab, which showed promise in slowing early cognitive decline. However, an FDA committee recommended against the drug in 2020 due to conflicting results and potentially harmful side effects.
A weapon against advanced Alzheimer's
There is also a drug to treat moderate to advanced Alzheimer's: Namenda (memantine). The newest U.S. drug in the arsenal against Alzheimer's, memantine was used in Europe to treat various types of dementia long before it was approved here. Unlike cholinesterase inhibitors, memantine protects brain cells from damage caused by the chemical messenger glutamate, that, when produced in excess, can lead to the death of brain cells. In cases of severe Alzheimer's, it's the only treatment available.
Memantine, which can be prescribed in addition to Aricept or another cholinesterase inhibitor, may help some patients with moderate to severe Alzheimer's hold on to their ability to perform daily tasks and maintain some independence. A U.S. study of 252 outpatients with Alzheimer's found that those using memantine were better able to use the phone, pay attention to conversation, get around outside the home, and perform daily tasks such as clearing the dishes after eating. These gains might seem modest, but to families dealing with Alzheimer's, they can be gratifying beyond measure.
Memantine also shows some potential for treating the earlier stages of the disease, DeLaGarza says. In fact, a combination of Namenda and a cholinesterase inhibitor, like Aricept, may prove to be more effective for early-stage Alzheimer's than the cholinesterase inhibitor alone. An observational study published in 2009 found that Alzheimer's patients who used cholinesterase inhibitors and memantine were able to postpone nursing home admission significantly longer than those who only took cholinesterase inhibitors.
However, the consumer watchdog group Public Citizen recommends against the use of memantine, saying there is little persuasive evidence that it improves functioning in Alzheimer's patients. The organization also notes that the manufacturer has received adverse event reports from Germany that include seizures and circulatory failure. Be sure to contact your doctor if your loved one takes memantine and you notice any unusual symptoms.
Researchers are studying turmeric and omega-3s
Research suggests that certain foods that contain omega-3 fatty acids may help lower the risk of developing Alzheimer's, and a recent study found that consuming omega-3s in combination with a diet that stressed fish, leafy greens, nuts, tomatoes, fruits, poultry, and cruciferous vegetables might also be protective against dementia.
Naturally, scientists are also investigating whether certain foods or supplements can help slow the progression of Alzheimer's. So far, fish oil DHA supplements -- which have antioxidant and anti-inflammatory powers -- have had mixed results in studies of people who already have Alzheimer's disease. Other researchers are looking into curcumin (found in the spice turmeric, used in curry powder) , which has powerful antioxidant, anti-inflammatory and cholesterol-lowering abilities. In animal studies, curcumin has reduced brain inflammation and the build-up of beta-amyloid, a hallmark of Alzheimer's disease. There are no conclusive findings in people, but it certainly won't hurt to make your loved one a few curries and some delicious salmon steaks in the meantime.
Drug therapy or social therapy for disturbing behaviors?
The slow mental decline wrought by Alzheimer's may be hard to witness, but it's the disturbing behaviors -- wandering, paranoia, violent outbursts, and so on -- that often put family members over the edge. Anything that will control these behaviors can go a long way toward helping a patient stay at home for as long as possible. For this reason, more doctors -- including DeLaGarza -- are looking beyond Alzheimer's medications for treatment options.
Many Alzheimer's behaviors can be controlled by keeping patients' environment as calm, nonthreatening, and familiar as possible. In cases of persistent and highly disturbing behaviors, however, doctors sometimes prescribe sleeping pills, antianxiety medication, and even antipsychotic drugs such as Zyprexa (olanzapine) and Risperdal (risperidone). Although the last two drugs have FDA approval only for schizophrenia and other psychiatric disorders, there is some evidence that they may reduce aggression in people with Alzheimer's.
However, these drugs should not be prescribed lightly. Doctors should only consider prescribing the drugs when a person's behaviors are causing serious distress, other approaches have been tried, and no underlying medical or environment cause can be found, according to a 2010 Johns Hopkins White Paper. Even as a last resort, any patients taking the drugs still need to be closely monitored by doctors and family members alike. Studies have long shown that the negative side effects of antipsychotic drugs for Alzheimer's patients -- like sedation, confusion, weight gain, mini-strokes, and sudden death -- may outweigh the benefits. And now data also show that Alzheimer's patients prescribed antipsychotic drugs do not live as long as those who do not take these medications.
Early-stage Alzheimer's patients capable of learning
Drugs, exercise and possibly a good diet aren't the only way patients and family members can buy time: According to two recent studies supported by the National Institute on Aging, people who have early-stage Alzheimer's disease have far more capacity to learn new things than previously thought.
Researchers in Miami, Florida found that mildly impaired Alzheimer's patients who took three to four months of "cognitive rehabilitation" classes had an 170 percent improvement in their ability to recall faces and names, along with a 71 percent improvement in their skill at giving the proper change for a purchase. The findings were published in the American Journal of Geriatric Psychiatry.
This report followed on the heels of an earlier study from Washington University in St. Louis, which found that older people in the early stages of Alzheimer's retained working levels of "implicit memory" similar to that in young and older adults who were free of Alzheimer's. Implicit memory, researchers noted, is largely automatic and unconscious, surfacing in skills such as speaking a language and riding a bicycle.
"Taken together, these studies introduce the exciting notion that older people in the early stages of Alzheimer's can be taught techniques that help them stay engaged in everyday life," said Neil Buckholtz, PhD, head of the Dementia's of Aging Branch of the NIA, discussing the research with an Alzheimer's organization. These findings suggest it's possible to pinpoint the memory capabilities that are preserved in early Alzheimer's, he added, "and make the most of them."
Walking and weaving
One way to make the most of these capabilities may be reality orientation therapy, which focuses on helping patients relearn new information such as dates, times of day, and location. One meta-analysis of six controlled trials found that classroom reality orientation produced modest cognitive gains in 125 Alzheimer's patients, and improved behavior in 48 -- benefits that in one study persisted a month after participants stopped attending the sessions.
Many families and caregivers can adapt the techniques used by researchers by hanging a blackboard or bulletin board where the patient can read it, and posting the day of the week, date, weather, season, and name and time of the person's next meal. (Books on caregiving show that, in fact, some families have long used similar techniques to help their loved ones.) Keeping a large clock, calendar, and schedule can also help people with Alzheimer's keep current; some may even review the calendar daily to remind themselves what happened the day or week before.
These techniques should be adapted to the individual, however, and in no cases should someone be "forced" into the present if he or she becomes disturbed or agitated. In addition, if the patient regularly mentions recent visits by a sister that died years ago, the latest thinking is that caregivers should simply acknowledge how much she loves her sister. Reality orientation is only valuable when it benefits the patient: Forcing someone to continually relive a painful loss would be cruel rather than helpful.
Find the approach that's right for you
A daily walk may be turn into a high point in the patient's day, but it shouldn't be the only moment of peace and satisfaction. Recent research shows music may help people with Alzheimer's recall key information. Researchers think this may occur because music bypasses the traditional memory centers most affected by Alzheimer's; instead, it is processed globally. You may be able to use a musical mnemonic device to teach new information to a loved one with Alzheimer's.
Larson says families should strive to create "pleasant events" for their loved ones, whether it's looking through a favorite photo album, getting a milkshake, or drawing a picture. "If you know someone well, you know what they like to do," he says. "The goal is to keep them doing it for as long as possible." Larson's own father is 88 years old and starting to slip into the middle stages of Alzheimer's. Larson doesn't want him to stare into space all day, so he buys kits for making Scandinavian rugs, something his father still enjoys.
Family members should resist the temptation to "sharpen" their loved one's mind with new puzzles and games, Larson says. "You don't want to force them to try anything new or anything they're not capable of doing," Larson says. "If you're trying to retrain the brain, it can be very frustrating."
Every family eventually finds its own approach to Alzheimer's. The most successful approaches combine quality medical care with regular exercise and a healthy dose of compassion. As the disease progresses and new problems arise, family members will naturally have fresh questions and doubts. At these times, families can turn to their local chapter of the Alzheimer's Association for guidance and support, Larson says. Buying time isn't always easy, but those extra days and months and years will be a family treasure.
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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