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Definition

Alzheimer's disease is the leading cause of age-related dementia, afflicting 4 million Americans. Dementia is a broad medical term that refers to the loss of mental functions such as memory and reasoning. Alzheimer's disease causes dementia by attacking nerve cells in the parts of the brain that control thought, memory and language. As more and more cells are destroyed, patients lose memories and the ability to reason and communicate. Personalities and behavior change. Eventually patients require total care. Once symptoms begin, the disease runs its course in two to 15 years, with seven to eight years being the average. Sometimes the decline is more gradual. People with Alzheimer's have been known to live for more than 20 years.

 Understanding Alzheimer’s

As recently as the 1960s Alzheimer's disease was considered a rare disorder. Today it's recognized as the leading cause of age-related dementia, a broad medical term that refers to the loss of cognitive functions such as thinking, remembering and making decisions. Alzheimer's causes dementia by attacking nerve cells in the parts of the brain that control thought, memory and language. As more and more cells are destroyed, patients lose memories and the ability to reason and communicate. Personalities and behavior change. Eventually patients require total care. Once symptoms begin, the disease runs its course in two to 15 years, with seven to eight years being the average. Sometimes the decline is more gradual. People with Alzheimer's have been known to live for more than 20 years.

The cause still remains unknown and no cure exists. Because researchers are beginning to unravel the mystery of Alzheimer's, there is reason to be optimistic. As they identify risk factors and uncover clues about the causes, researchers are beginning to understand how the brain responds to the chemical and structural damage brought on by the disease. Their findings are leading the way to new methods for diagnosing and treating the disease and maybe even preventing it. Two drugs that help slow the mental deterioration in the early stages are on the pharmacy shelves. As Roger Rosenberg, M.D., director of the Alzheimer's disease Center at the University of Texas Southwestern Medical Center, told Newsweek: "We don't have the penicillin for Alzheimer's yet, but it's coming."

Who has Alzheimer's?

According to the Alzheimer's Association and the National Institute on Aging, about 4 million Americans suffer from Alzheimer's. It typically afflicts people 60 and older, but in rare cases, people in their 40s and 50s can develop the disease. According to a large survey of retired people, about 3 percent of those ages 65 to 74 have Alzheimer's. The figure rises to 19 percent for those aged 75 to 84, and to 47 percent for those 85 and older. Because the elderly population is growing rapidly, some estimates say that unless a cure or prevention is found, there will be 14 million sufferers in the United States by the middle of this century.

Despite its prevalence among the elderly, Alzheimer's is not a normal part of aging. While some memory loss is normal as we age, the loss in reasoning and functioning that come with Alzheimer's are not. Alzheimer's is an abnormal condition that targets the rich and poor, the famous and ordinary. Today's most prominent victim is former President Ronald Reagan. His battle with the disease led to the establishment of the Ronald and Nancy Reagan Research Institute of the Alzheimer's Association. Other famous sufferers include British Prime Minister and statesman Winston Churchill and actress Rita Hayworth.

How does Alzheimer's Progress?

Alzheimer's is a progressive disease, with symptoms growing worse over time. Physicians and researchers use various scales with five or more stages to accurately measure the progress of the disease. But in general, there are three  broad stages: mild, moderate and severe. The earliest stages of the disease often go unnoticed because the onset of symptoms is so gradual. The person may be slightly more forgetful than normal, not remembering the names of familiar people right away or having some trouble finding the right word. But since there is little effect on daily life or job performance, the slight changes, if they're noticed at all, are often shrugged off by the person and by those around him or her.

Mild Stage

• Memory loss becomes more noticeable
• Concentrating and paying attention becomes harder, leading to difficulties in understanding written material, doing calculations or making job-related decisions
• Misplacing or losing valuable items
• Momentary disorientation in familiar surroundings
• Some changes in personality and judgment

Moderate Stage

• Memory loss about recent events and some details of personal lives
• Inappropriate use of words
• Difficulty in performing such tasks as planning meals and dressing
• Increased disorientation
• Agitation, anxiety, suspiciousness
• Confusion between day and night
• Sleep disturbances
• Wandering off and not knowing how to return
• Failure to recognize friends and relatives

Severe Stage

• Memory loss nearly complete
• Severe disorientation and confusion
• Speech declines to a few intelligible words
• Loss of physical functions like walking and sitting up
• Loss of bladder and bowel control
• Loss of appetite
• Total dependence on caregiver

Causes and Risk Factors

The brain is a complex signaling system much a like a computer. There's information coming in, information being processed and turned into memories, and information going out. All of this is accomplished in the brain by means of hundreds of billions of nerve cells, each capable of branching out and connecting with hundreds of thousands of other nerve cells. Unlike pieces of wiring in a computer, however, nerve cells don't touch each other. Instead, they use dozens of chemical messengers to communicate across tiny gaps called synapses. Somewhere, somehow, something goes wrong and causes Alzheimer's. Researchers still have not identified exactly what that something is.

Risk factors
Know the odds. Well-established factors such as advanced age, family history, being female and environmental influences may increase the chances. Discover probable factors that you should also be aware of.

Not one cause but many?
How far are we toward understanding cause or interaction of causes of the disease?

How does Alzheimer's destroy the Brain?

Alzheimer's disease or at least age-related memory loss has been around for a long time. Historical texts from ancient Egypt, Greece and Rome describe symptoms similar to those of Alzheimer's, and Shakespeare wrote about old age as being a time of "second childishness and mere oblivion." But it wasn't until 1906 that a German doctor named Alois Alzheimer characterized the structural changes in the brains of people with what became known as Alzheimer's disease.

At that time, Dr. Alzheimer had been treating a woman with an unusual memory loss for several years. She could name objects shown to her but would immediately forget them. She often didn't know what the objects were for. The woman forgot or misused words. She described her condition by saying, "I have lost myself." When the woman died at age 56, Dr. Alzheimer performed a brain autopsy and discovered the two physical features that still are used to definitively diagnose Alzheimer's after a person dies.

He noticed inside nerve cells in the cerebral cortex (the part of the brain responsible for reasoning and memory) were bundles of twisted strands that he called neurofibrillary tangles. He also observed that around the nerve cells were dense deposits or senile plaques. Dr. Alzheimer speculated the nerve tangles and plaques caused the woman's dementia, but he couldn't be sure they were the cause and not the result of the disease.

Today, scientists are still not sure. They know tangles and plaques develop only in the parts of the brain that control memory and knowledge and that as they form, the nerve cells become so disorganized that they stop functioning and eventually die. All the activities those cells control die with them. Researchers also know the tangles are associated with an abnormal accumulation of a protein called tau and plaques are made of a core of a peptide, called beta-amyloid-42, around which is clumped debris from broken-down cells. A peptide is a fragment of a protein molecule.

Searching for Causes

• The proteins: In a healthy nerve cell, tau forms part of the structural scaffolding of the cell that helps distribute nutrients. In a cell affected by Alzheimer's, something causes the tau molecules to twist, collapsing the scaffolding and killing the cell. Beta-amyloid is also normally found in healthy individuals, but something makes it accumulate abnormally in Alzheimer's patients. One suggestion is that some other substance binds to beta-amyloid, making it come out of solution and get deposited as plaques. Another suggestion is that the peptide is toxic to nerve cells. This idea is supported by a study in which brain cells died when beta-amyloid was added to the cell culture. Why it's toxic is unclear. It may allow too much calcium into the nerve cell, which can be lethal, or reduce the amount of a substance needed to make a necessary chemical messenger. Or, it may be the body's own defense against the plaques that cause the damage. The plaques trigger an immune response that leads to inflammation, which in turn robs brain cells of nutrients and oxygen. Recently, non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, were shown to slow the progress of the disease.

• The genes: Studies done on families with many cases of Alzheimer's occurring late in life have implicated a gene on chromosome 19. The gene codes for a protein called apolipoproteinE or ApoE that can bind to beta-amyloid. Once researchers discovered 40 percent of Alzheimer's patients had an unusual form of the protein called ApoE4, they began to suspect that it may latch onto beta-amyloid and make it more likely to form plaques. It may also be the reason why the tau protein twists inside cells. Other theories say it's the reason why nerve cells affected by Alzheimer's have shorter branches that reach out to and communicate with other cells. However, because not everyone with the gene for ApoE4 develops Alzheimer's and not everyone with Alzheimer's has the gene, it cannot be the only cause. Other genes on other chromosomes have also been implicated. For example, research on families in which some members develop the disease early in life has turned up a gene on chromosome 21. This gene directs the production of a mutated version of the protein that splits and forms beta-amyloid. Chromosome 21 is also the chromosome involved in Down's syndrome. As people with Down's grow older, they develop tangles and plaques in their brains similar to those found in brains with Alzheimer's.

• The chemical messengers: One nerve cell communicates with another by releasing chemicals called neurotransmitters. These chemicals cross the synapse between the cells and bind to receptor molecules in the membrane of the second cell. Other substances in the cell relay the message. Since the 1970s, research has shown the level of one neurotransmitter called acetylcholine is dramatically lower than normal in people with Alzheimer's. Much research into treating the disease concerns boosting the level of this chemical. Other neurotransmitters have also been shown to be lower in some Alzheimer's patients but none to the same degree. Abnormalities in the receptors and other chemical messengers on the other side of the synapse also interest researchers.

• The metabolism of glucose: Nerve cells depend on glucose, a sugar molecule, for energy. When the metabolism of glucose is disturbed, the cells may not be able to manufacture neurotransmitters such as acetylcholine or they may react abnormally to such chemical messengers. Eventually they die. Researchers are trying to find out whether the decline in glucose metabolism they see in patients with Alzheimer's is because of the disease or causes the disease.

• The amount of calcium: Nerve cells need calcium to transmit signals. Too much calcium, however, can kill a cell; so the amount is carefully regulated by various mechanisms. A breakdown in any one of the mechanisms could cause the degeneration of nerve cells seen in Alzheimer's.

• The environment: The most studied environmental factors that may play a role in causing Alzheimer's are aluminum, zinc, food-borne poisons and viruses.

Risk Factors

Studying risk factors not only helps warn people of their chances of developing a disease, it can provide clues to the disease's causes. Risk factors for Alzheimer's are divided into ones that are well established and others that are still considered only probable. None of the risk factors predict development of the disease. They simply suggest an increased risk.

Well-established Factors

• Increasing age: Simply put, the older you are, the greater the risk.

• Family history: A strong case for a genetic cause is made on three fronts. A Finnish study on identical twins showed if one twin developed Alzheimer's, the other had a 40 percent to 50 percent chance of developing it, too. Yet another study called MIRAGE that tracked the lifetime risk of nearly 13,000 relatives of people with Alzheimer's found remarkable results. People with two parents with the disease were five times more likely to get it than people with two unaffected parents. A separate study showed there were specific genes in families with a history of Alzheimer's as well as in people with Down's syndrome.

• Being female: The MIRAGE study also showed women have a higher risk of Alzheimer's disease at every age.

• Environmental factors: Because the identical twin of an Alzheimer's patient does not have a 100 percent chance of developing the disease, environmental factors probably influence any genetic predisposition. In another study, elderly Japanese men living in Hawaii were compared with a similar demographic group remaining in Japan. The findings suggest factors associated with migrating to Hawaii increased the risk of Alzheimer's to that of white Americans and Europeans. Also, various studies have linked specific environmental factors, such as zinc and food-borne poisons, with damage to nerve cells.

Probable Factors

• The increased presence of the ApoE4 gene can be detected by laboratory tests.

• Infrequent use of NSAIDs appears associated with increased risk. Studies show people with severe arthritis or leprosy that are treated with large doses of these medications exhibit a lower incidence of Alzheimer's than the general population. A survey of more than 1,800 people by the National Institute on Aging further indicated the longer people took NSAIDs, the lower their risk. Other studies looked at people with Alzheimer's, some who took NSAIDs regularly and some who did not. Those who took NSAIDs exhibited a slower mental decline. Because inflammation plays a role in developing tangles and plaques, NSAIDs may protect against the damage.

• Post-menopausal women who do not use hormone replacement therapy may be at higher risk. Studies show women who take estrogen as hormone replacement therapy are less likely to develop Alzheimer's. Those who have Alzheimer's and take the hormone suffer less severe symptoms and show a slower mental deterioration. In one study on 12 female Alzheimer's patients, the women improved in cognitive test scores after just one week on the hormone.

• Deficiency of antioxidant nutrients such as vitamins A, C and E, and the mineral selenium may allow highly reactive oxygen molecules called free radicals to damage brain cells.

• Head injuries that result in loss of consciousness have been associated with increased risk of Alzheimer's.

• Heart disease, stroke and high blood pressure all damage blood vessels that carry oxygen and nutrients to the brain and may contribute to the development of Alzheimer's.

• The less formal a person's education, the more likely he or she is to develop Alzheimer's.

Not one cause but many?

In the end, Alzheimer's may turn out to be a medical whodunit with many culprits all interacting and influencing each other, but not one of them causing the disease on its own. Whatever the cause or combination of causes, researchers have a way to go before solving the mystery.

Diagnosing Alzheimer's

Diagnosing Alzheimer's can be a frustrating experience for both the patient and the physician. That's because no simple test exists for diagnosing Alzheimer's. There's no way to see the telltale tangles and plaques in the brain while the patient is still alive.

Much research is focused on developing reliable tests to make it easier to diagnose the disease as early as possible. For example, people with Alzheimer's have a higher level of tau and a lower level of beta-amyloid in the cerebrospinal fluid, or CSF, that bathes the brain and the spinal cord, than unaffected people. Some researchers believe a combination test to detect high CSF levels of tau and low levels of beta-amyloid may become a powerful tool for diagnosing the disease.

Even though no drugs can stop the disease, being able to recognize the warning signs early is extremely important. An early diagnosis gives individuals a better chance of benefiting from existing treatments and allows them to participate in planning for their future before time runs out.

 

What are the Warning Signs?

Family members, friends and co-workers are usually the first to notice the warning signs. The affected person may or may not be aware of any changes. According to the Alzheimer's Association, a person exhibiting several of the following symptoms should see a family doctor, a gerontologist or a neurologist right away for a complete exam.

• Memory loss that affects job skills
• Difficulty performing familiar tasks
• Problems with language
• Disorientation to time and place
• Poor or decreased judgment
• Problems with abstract thinking
• Misplacing things
• Changes in mood or behavior
• Changes in personality
• Loss of initiative

Is it normal or is it Alzheimer's?

Most of us forget to do things at times. Many of us misplace our keys or eyeglasses on occasion. Usually these are just normal glitches in how our memories work. Healthy people, in fact, experience just about every warning sign sometime in their lives and increasingly so as they age. How can these normal events be distinguished from Alzheimer's warning signs?

It's a matter of degree, frequency and awareness. As Dr. Steven T. DeKosky, director of the Alzheimer's disease Research Center at the University of Pittsburgh has explained: "You need to look at the functional consequences of what someone can't remember. If mom forgets where she put her car in the parking lot at the mall, that's not abnormal. But if she walks home from the mall because she forgot she took her car, that's not normal."

Let's look at each warning sign individually.

• Memory loss that affects job skills: It's normal to occasionally forget an assignment or a colleague's phone number, but it's not normal to frequently forget such things or to be so confused or unable to concentrate that you can't do your work.

• Difficulty performing familiar tasks: Once again it's normal to go to the store and forget to buy an item you wanted or to get distracted and forget the pie that's in the oven. But it's another matter to forget to pay for purchases at the store or to forget you made a pie.

• Problems with language: Just about everyone's pulled a blank on a person's name as they're about to introduce him, but forgetting names on a regular basis or forgetting simple words and substituting inappropriate ones may be a sign of Alzheimer's.

• Disorientation to time and place: It's normal to lose track of the time or momentarily get disoriented in an unfamiliar setting, but people with Alzheimer's can forget what year it is or get lost in their own home.

• Poor or decreased judgment: Not bringing an umbrella when it looks like rain is an ordinary oversight. Not knowing to bring an umbrella is a warning sign. So is wearing a winter coat on a hot day, wandering along a busy highway in the middle of the night or leaving a young child all alone.

• Problems with abstract thinking: Many people can't balance their checkbook or have trouble figuring out fractions in a recipe, but people with Alzheimer's may forget how to add and subtract or fail to recognize numbers.

• Misplacing things: Being careless or disorganized may make it hard to find your car keys or eyeglasses. But people with Alzheimer's may put the car keys in the freezer, then not recall where they are. Or they may look for their glasses in strange places, such as the fish bowl, and not think their behavior is odd.

• Changes in mood or behavior: Everyone feels moody at times, but it's not normal for a person to exhibit such rapid changes in mood that he or she is laughing one moment and shouting in anger the next, all without cause.

• Changes in personality: As people mature and age, their personalities may gradually change. A person with Alzheimer's, however, undergoes dramatic, often sudden, changes. For example, a cheerful outgoing person may become timid and suspicious.

• Loss of initiative: It's normal to get bored with the daily grind of work and home every so often and lack the energy to start chores. It's not normal to have to be prompted and encouraged to do even the most ordinary tasks, such as dressing or swallowing food.

Why does it take so long to get Alzheimer's diagnosed

Researchers at the Oregon Health Sciences University in Portland found that it took an average of 30 months from the time family members first noticed warning signs to get a diagnosis. After interviewing 244 caregivers and close relatives of people with Alzheimer's, they reported the reasons for the delay in the April 1999 issue of the American Journal of Alzheimer's Disease. The reasons indicate why it's so important to understand Alzheimer's and know the warning signs.

The most common reason, cited by 72 percent of the caregivers, was that they did not know about Alzheimer's and did not think the changes they saw in the person were the result of a disease. Half of the caregivers thought the changes were just a normal part of aging. Other reasons included not knowing what kind of doctor to see (44 percent), not knowing how to explain the problems to the doctor (38 percent), or not being able to see the doctor in private (27 percent). Sometimes the response of the doctor was the problem: 29 percent of caregivers complained that the doctor didn't take their concerns seriously, while 25 percent said their doctor told them the problems were due to normal aging.

What to Expect at the Doctor's Office

The patient should see the family doctor first and then one or more specialists, perhaps a gerontologist or a neurologist. In diagnosing Alzheimer's, the doctors follow a set of guidelines and criteria developed by such organizations as the American Psychiatric Association and the Alzheimer's Association among others. These procedures help detect and rule out the more than 60 other disorders that can cause some of the warning signs. Among the more common ones are multiple strokes, brain tumors, late-stage Parkinson's disease, severe clinical depression, AIDS and chronic alcoholism. Pick's disease and Creutzfeldt-Jakob disease (similar to mad cow disease), two very rare disorders, also mimic Alzheimer's. Even certain medications can cause a patient to exhibit some of the symptoms. Studies show that doctors are correct in diagnosing Alzheimer's about 90 percent of the time.

• The doctor will first take a medical history to gather information about the patient's current and past health problems and a family history of illnesses. By interviewing the patient and close family members separately and together, the doctor is able to piece together a detailed description of what symptoms are exhibited and when they appeared.

• Next the doctor may use special questionnaires in a mental status evaluation to assess the patient's sense of time and place, level of understanding, memory and ability to do simple calculations. The patient's education, occupation and ethnic background are accounted for.

• By evaluating the person's blood pressure, pulse, general condition and nutritional status, a physical examination can rule out the presence of heart problems, hardening of the arteries, and kidney, liver and thyroid diseases that may cause dementia.

• The doctor tests the nervous system during a neurological examination to rule out other disorders that can cause dementia-like symptoms, such as stroke, brain tumor and Parkinson's. During this exam, the doctor also will evaluate coordination, muscle tone and strength, eye movement, speech and sensory abilities.

• Laboratory tests on blood and urine can help tell whether the symptoms are due to anemia, infection, diabetes, kidney or liver disorders, abnormal levels of thyroid hormone or nutritional deficiencies.

• Doctors may employ various brain imaging exams, such as an MRI or CT scan, or brain activity tests, such as an EEG or PET, to rule out tumors, strokes and blood clots in the brain.

Psychological and psychiatric evaluations are used to provide more information on the patient's ability to remember, reason, write and express ideas than the mental status evaluation can. They also help rule out certain illnesses such as depression that can cause symptoms similar to Alzheimer's.

 

Treating Alzheimer’s

In 1990, Alzheimer's patients and their families had few options. A decade of research has made more treatment and care options available, with a promise of more to come.

Today's treatments are designed to relieve symptoms. One group of drugs is directed toward improving the patient's cognitive symptoms, thinking, understanding and remembering. A second group of drugs is used to treat the behavioral problems associated with Alzheimer's, such as aggressiveness, agitation, depression and anxiety.

Treating Cognitive Symptoms

The U.S. Food and Drug Administration (FDA) approved three drugs that improve cognitive functions in some patients in the early stages of the disease. The next generation of these drugs promises to do more. Researchers are investigating dozens of compounds that may delay onset of the disease, dramatically slow its progression or even reverse its course by enhancing communication between nerve cells, protecting nerve cells from damage or repairing already damaged brain cells. Says Zaven Khachaturian, Ph.D., director of the Alzheimer's Association's Ronald and Nancy Reagan Research Institute: "If we can push back the onset of Alzheimer's for just five years, we can reduce by 50 percent the number of people who get the disease, add years of independent functioning to people's lives and reduce the amount of care they need."

Nerve cells communicate by means of chemical messengers called neurotransmitters. The neurotransmitter acetylcholine is responsible for transmitting the signals involved in memory and cognition. When researchers found that the level of acetylcholine is extremely low in people with Alzheimer's, they figured that boosting its levels might ease symptoms. One way to increase the level of a substance in the body is to decrease its breakdown. The four FDA-approved drugs work by inhibiting the production of the enzyme cholinesterase that breaks down acetylcholine. They are called cholinesterase inhibitors.

• Tacrine (Cognex®). The first drug approved for Alzheimer's, tacrine has proven disappointing in clinical use. Only 20 percent to 40 percent of patients who receive it are helped; it is costly at $125 per month and it causes a potentially serious side effect, liver damage, as well as nausea, vomiting, diarrhea, abdominal pain and skin rash. On the other hand, for those patients who respond to tacrine, it keeps them functional longer and shortens the time a patient requires nursing home care (from 2.7 years to 1.5).
• Donepezil (Aricept®). Donepezil has largely replaced tacrine. The American Psychiatric Association recommends donepezil over tacrine because of its convenient once-a-day dosing (tacrine is taken four times daily) and it does not cause liver problems. Its mostly mild side effects include diarrhea, nausea, vomiting, insomnia and dizziness. Like tacrine, donepezil does not work for everyone. Patients who do respond show some improvements in cognitive functions, mental status exam scores and behavior.
• Rivastigmine tartrate (Exelon®). Rivastigmine tartrate, another cholinesterase inhibitor, is approved for treating Alzheimer's. Clinical trials show it improves patients' cognition and performance of daily activities while reducing disruptive behavior. Rivastigmine tartrate can cause significant gastrointestinal side effects, including nausea, vomiting, and anorexia and weight loss. It should be used with caution in patients with peptic ulcers, gastrointestinal bleeding and "sick sinus syndrome" or other supraventricular cardiac conduction conditions.
• Galantamine hydrobromide (Reminyl®). Derived from the bulbs of daffodils, this drug was shown in clinical trials to have a beneficial effect on patients' daily performance and ability to think. Galantamine works in two ways. It is a cholinesterase inhibitor, like its predecessors, and it works on the nicotinic receptors in the brain. Nicotine, researchers have found, enhances the brain cell release of acetylcholine. The drug can cause significant gastrointestinal side effects, such as nausea, vomiting, anorexia, diarrhea and weight loss.
• Memantine HCI (Namenda®). Memantine treats moderate to severe Alzheimer's and is classified as an N-methyl-D-aspartate (NMDA) receptor antagonist, the first Alzheimer drug of this class approved in the United States. The drug, which was approved by the FDA in 2003, works by regulating the activity of glutamate, one of the brain's specialized messenger chemicals involved in information processing, storage and retrieval. This chemical is important for learning and memory by triggering NMDA receptors, which allow a controlled amount of calcium to flow into a nerve cell. Too much glutamate, on the other hand, over stimulates NMDA receptors to allow too much calcium into nerve cells, leading to the death of cells. Memantine may protect cells against too much glutamate by partly blocking NMDA receptors.

Preventing Alzheimer's

In recent experiments, several substances have shown promise in preventing Alzheimer's, delaying its onset or reducing its severity. They are:

• NSAIDs: Regular use of NSAIDs (nonsteroidal anti-inflammatory drugs such as ibuprofen, naproxen and indomethacin) decreases the risk of Alzheimer's and slows mental decline. These drugs probably work by reducing the amount of inflammation involved in the production of nerve tangles and plaques. Their main drawback as preventive drugs is that they can cause gastrointestinal problems, especially in the elderly. New forms of these drugs, such as Celebrex® and Vioxx® that were developed to treat arthritis, cause fewer gastrointestinal side effects. They and several NSAIDs under development that specifically target the brain may prove useful in preventing and/or treating Alzheimer's.
• Estrogen: Some studies have linked the female hormone estrogen to improved memory and possible delay of Alzheimer's in women. Estrogen may boost levels of acetylcholine and blocks the formation of senile plaques. It also increases blood flow to the brain and helps maintain the hippocampus, a part of the brain responsible for establishing memories. However, combination hormone replacement therapy that includes progestin and estrogen may actually double the risk of Alzheimer's and related dementias for women taking the treatment after age 65. The study appeared in the May 28, 2003 issue of The Journal of the American Medical Association. A second report in the same issue showed women taking this drug had a slightly increased risk of significant cognitive decline.
• Antioxidant nutrients: Vitamins such as A, C and E may prevent damage from free radicals, which are highly chemically reactive oxygen molecules can inflict damage on body tissues. Scientists believe that free radicals may cause heart disease and cancer and may contribute to Alzheimer's by creating conditions that favor the formation of senile plaques. A few studies have investigated the effect of antioxidants on Alzheimer's disease. Vitamin E at doses of 400 IU to 800 IU per day may prevent or slow the development of the disease. In addition, the antioxidant drug selegiline has been shown to improve memory in people with mild-to-moderate Alzheimer's and to enhance the benefits of tacrine. Both selegiline and high doses of vitamin E were shown to slow the progression of the disease in patients with moderately severe Alzheimer's.
• Ginkgo biloba: This herb may improve recall and mental acuity in normal people. It's currently being tested in Alzheimer's patients.

Finally, a variety of alternative therapies have been used tried to improve cognition. Caregivers report giving their Alzheimer's patients vitamins (84 percent), health foods (22 percent), herbal medicines (11 percent) and so-called "smart pills" (9 percent). Only one-third who used such approaches said they helped, and then only a little. That's the same response rate that a placebo, or sugar pill, would be expected to get.

Treating Behavioral Symptoms

Some people with Alzheimer's have depression or anxiety or display changes in behavior. Since behavioral symptoms often have an underlying cause such as physical discomfort or drug side effects that the patient cannot explain to the caregiver, any change in behavior should first be discussed with the patient's doctor. Once it's determined that treatment is required, there are two options.

• Non-drug treatments: These should be the first option to avoid taking unnecessary drugs. A good place to begin is with family education and counseling to learn about the behaviors of patients and how to cope with them. Another treatment to try is changing the patient's environment; keeping the noise level low prevents confusion for the patient. Also helpful is keeping familiar items around to reassure the patient. Helping the patient organize and plan activities during the day lets the patient feels useful and may relieve depression, agitation and wandering.
• Treatment with anti-anxiety, antidepressant and antipsychotic drugs: An antipsychotic like Risperdal® (risperidone) may be needed to relieve anxiety, agitation, aggression, paranoia, delusions and depression associated with Alzheimer's.

 

If You Have Alzheimer's

If you've been diagnosed with Alzheimer's disease, you need to make certain decisions now to be ready for the time when you no longer can. You'll want to think about the type and location of care you will receive. You'll also need to make medical and financial decisions. It helps to get help right away.

Where can you get help?

• A family member or friend: You're going to need someone's help in gathering the following information and advice. This person should probably be your primary caregiver.

• The Alzheimer's Association: This national organization can tell you about the services in your area. Get the name and number of your chapter representative and call for information on local support groups, programs and how to get help for planning for the future.

• The doctor and Alzheimer's specialist: Ask about the symptoms and behavioral changes to expect and what treatments are available, including clinical trials. Be sure you or your caregiver keeps this communication ongoing, as your condition and treatment constantly change.

• A lawyer: You can get referrals for lawyers knowledgeable about the affairs of the elderly from the Alzheimer's Association and the American Association of Retired People (AARP). You'll need a lawyer for putting together legal and financial documents such as power of attorney and a living will, finding out about issues like legal capacity and guardianship and understanding insurance issues concerning costs of long-term care and Medicare and insurance coverage.

• A financial adviser: It's important to know the financial consequences of a chronic, debilitating disease and to find out how to get information on financial and insurance options as well as protecting your assets. Again, the Alzheimer's Association and the AARP can help you find people to help with these concerns.

• A local care services: While you may not need a caregiver yet, you will in the future. To help you learn about care options and to decide whether in-home care or a care facility is best for you, speak to a case manager or social worker from the Alzheimer's Association or your state or local Agency on Aging. They can tell you about care options in your community, the pros and cons of each one, their costs and if financial assistance is available.

What do you need to know?

Being diagnosed with Alzheimer's is frightening and overwhelming. But as the Alzheimer's Association points out, "having information about the disease can help you cope." It's important to understand that:

• The disease will bring on such symptoms as difficulty in thinking, remembering, learning new things and making decisions, symptoms that grow worse with time.

• The disease causes behavioral changes that you may or may not be aware of.

• These changes in abilities and behavior are because of the disease. They're not your fault.

• Alzheimer's affects each person differently; so the timing and pattern of your symptoms may differ from the standard stages of the disease.

• As you need your family and friends more and more for help and support, your relationships with them will change.

• All these changes may make you feel angry, sad, confused, depressed, anxious, embarrassed, frustrated, guilty and lonely. These feelings are to be expected, but there are things you can do to help yourself.

• Realize that you're not alone. Not only do others suffer from Alzheimer's, but many people understand what you're going through and want to help you.

How can you help yourself?

• Join a support group. Talk to others with Alzheimer's, and learn from them ways to cope with the turmoil of your emotions and changing symptoms.

• Spend time with family and friends. This helps prevent feelings of loneliness and sadness.

• Do things you enjoy. Identify activities and chores that you like doing and can do on your own as much as possible so that you can feel useful and productive.

• Take your time. If you're having trouble keeping up with a conversation, slow down and ask the others to speak more slowly, too. If you're doing a chore, don't rush.

• Accept help when you need it. If you get lost, ask someone for help. Or, better yet, take someone with you when you go out. Arrange for others to help with tasks you can't do yourself.

• Keep track of time. Mark days off on a large calendar, and have someone remind you of appointments and when to take your medication.

• Maintain a daily routine and keep things simple. This reduces distractions and lets you focus on things that matter.

If You Are the Caregiver

There are two main care giving strategies or goals. The first is to help the patient maintain as much independence in daily activities for as long as possible. This is extremely important in the mild-to-moderate stages of the disease because patients feel better about them and have a better quality of life. The cardinal rule here is not to do something the patient can do alone. At first, that may mean letting the person dress him or herself with just some assistance in choosing appropriate clothes. Later, it might mean prompting the person to pick up the shirt or even to put an arm through the sleeve. The second care giving strategy is to reduce or prevent disturbing behaviors.

It's also important for you to remember as caregiver that you are not alone. Statistics compiled by the Alzheimer's Association and the National Institute on Aging show nearly 3 million spouses, relatives and friends care for the more than 70 percent of people with Alzheimer's who live at home. You can find a lot of help and support, starting with the local chapter of the Alzheimer's Association, your state or local Agency on Aging and the patient's physician.

What should you do first?

• Educate yourself. Talk to the patient's doctors. Contact the Alzheimer's Association and the Agency on Aging. Read books and visit Web sites. Become informed about symptoms, behavioral changes and available treatments, as well as how to be an effective caregiver.

• Inform your family and friends. Family members and friends can help you make decisions and see you through these difficult times if they know about and understand the diagnosis. R.E. Markin, Ph.D., author of the book "Coping with Alzheimer's: The Complete Care Manual for Patients and Their Families," advises meeting with the family in the patient's absence. Openly discuss the patient's condition, prognosis, care options, finances and how each person can help. It's a good idea to meet whenever there's a major change in either the patient's condition or your needs as caregiver.

• Create a support network. Identify a few close friends and family members you can count on to help you cope as well as care for your loved one.

• Get legal and financial help. You'll need a lawyer and perhaps a financial adviser to establish power of attorney, to make wills and living wills for the patient and yourself, and to figure out insurance policies. Caring for a person with Alzheimer's at home costs $18,000 a year. A nursing home runs from $30,000 to $50,000 a year. At the present time, the care of patients with Alzheimer's is viewed as custodial and is not covered by Medicare or most health insurance plans. You can get referrals for lawyers and advisers knowledgeable about the affairs of the elderly from the Alzheimer's Association and the American Association of Retired People.

• Keep the person with Alzheimer's involved. It's important, especially if the disease has been diagnosed early, to make sure the patient understands his or her condition and to find out what his or her wishes are for treatments, care options, and legal and financial matters. Accompany the person when he or she consults doctors, lawyers and financial advisers. If the person is no longer competent in these areas, you'll have to take on the consulting and decision-making, but try to discuss the issues with the patient as much as possible.

• Plan ahead. Put together a plan to cover the changes in abilities and behavior that you can expect with Alzheimer's. For example, you know that people with Alzheimer's often wander, leaving home alone and getting lost in the process. You can plan for this by installing special locks or asking neighbors to be on the lookout.

Where can you get care giving help?

A variety of services exist. They can help with everything from housekeeping to providing physical and occupational therapy for the patient. There are also out-of-home services such as adult day-care centers that can help relieve you. Consult the Alzheimer's Association and the Agency on Aging for information on services in your area. Also take advantage of community resources that can be coordinated through your physician's office, the local county health or social services department, or a visiting nurses association. Such services include:

• Home health aides
• Visiting nurses
• Social workers
• Therapists
• Respite care
• Adult daycare centers
• Special care units at nursing homes
• Transportation services
• Alzheimer's Association support groups
• Small service businesses that will do shopping and chores for you

What can you expect?

The progress of Alzheimer's differs from patient to patient. For most caregivers, the decline in mental faculties -- the failure of memory, reasoning and ability to make decisions -- is anticipated but the troubling changes in behavior often are not. What are some of these odd behaviors?

• Wandering: More than 75 percent of people with Alzheimer's walk or pace with what looks like no purpose at some time during the course of their disease. Wandering can happen during the day or at night, when it's particularly dangerous to the patient and disturbing to the caregiver. Sometimes, wandering may be a leftover from an earlier time in the person's life. For example, the person may always have paced when under stress or the person was used to going out at a particular time. Other times, the wandering may be the result of the person's confusion, perhaps looking for something that's been misplaced or trying to find the bathroom. Or, the person's bored or feeling trapped.

• Sleep disturbances: People with Alzheimer's often are restless at night, getting up to go to the bathroom or because of a bad dream, only to get disoriented in the dark and start wandering. Some may get dressed, try to cook a meal or leave the house.

• Hoarding and hiding things: People with Alzheimer's who used to collect things may save things, such as food and dirty clothes, and hide them in strange locations.

• Repetition: Many families find people with Alzheimer's ask the same question over and over or repeat a particular action like folding a towel or pacing around in a circle.

• Clinging and following: Like a toddler who won't let the mother out of sight, the person with Alzheimer's often follows the caretaker from room to room. This is most likely the result of the need for security in a strange world and the inability to remember the caretaker will return.

• Complaining, insulting and lying about the caregiver: Occasionally, people with dementia complain incessantly about the care they receive either to their caregivers directly or to friends and family who visit. They may also turn on their caregivers, accusing them of trying to poison them or hurting them in some way.

• Sundowning: Behavior problems such as agitation, restlessness and disorientation frequently become exaggerated as evening approaches. This is a psychiatric term known as sun downing. As a mental state, sundowning does not have a known cause, but it may be that the patient is tired at the end of the day, has difficulty seeing in the dark or is disturbed by the increased activity in the household during the evenings.

There are also psychological and mood problems to deal with. Be on the lookout for:

• Depression or sadness
• Apathy and listlessness
• Anger
• Irritability
• Anxiety
• Agitation and nervousness
• Restlessness
• Paranoia and suspiciousness
• Hallucinations and delusions

How can you handle odd behaviors?

Dealing with the array of behaviors that a person with Alzheimer's exhibits takes patience, self-control, understanding, flexibility and creative problem solving. Each behavior may need its own solution. Wandering, for example, may require putting special locks on outside doors or creating a safe wandering area. Certainly, anyone with Alzheimer's who wanders should be registered with the Alzheimer's Association's Safe Return Program and wear a Medic Alert bracelet or necklace. Turning on lights or simplifying the routine at night may ease sundowning.

Your local Alzheimer's Association's newsletter and support groups are great sources for solutions to many of these problems. So, too, are a number of books for caregivers. The authors of the caregivers' guidebook "The 36-Hour Day" recommend using what they call the six R's to think through a problem:

• Restrict: By all means try to stop a behavior if it's dangerous. But if it's not, you might want to leave the behavior alone. Stopping a behavior can upset the person more.

• Reassess: Think about what might be causing the behavior. Is it a reaction to a medication? Is the person ill or uncomfortable, can't see in dim light or hear with a lot of background noise, or finds a particular object upsetting.

• Reconsider: Try to see things from the patient's point of view, and realize that the person doesn't always know or understand what needs to be done. For example, bathing some people might upset them because they don't understand the need to be clean. Explaining what you're doing and why in a quiet tone might help.

• Rechannel: Redirect the person to perform in a safer, nondestructive way. For example, if the person is hoarding dirty clothes, provide something else for him or her to collect and hide away.

• Reassure: Take time to calm the person who is upset, angry or afraid. Tell him or her that things are okay and that you still love him or her.

• Review: Think about the incident and how you handled it. Make a note of what led to the behavior, how well you dealt with it and what you could try the next time.

Some do's and don'ts

Do

• Remember the disease causes the behavior and is not the person's fault.
• Remain calm
• Be patient
• Distract with another activity or object
• Talk to the person
• Listen to the person
• Be reassuring and loving
• Speak in short simple sentences
• Include the person in fun and family activities
• Limit choices to two
• Keep routines simple
• Break activities into simple steps
• Praise accomplishments
• Focus on what the person can still do
• Avoid situations that trigger bad behaviors
• Maintain a sense of humor

Don't

• Raise your voice or get angry
• Scold
• Argue
• Act surprised or shocked
• Be embarrassed
• Do more for the patient than he or she needs
• Focus on what the person can no longer do

Take care of yourself

It's not uncommon for the caregiver of person with Alzheimer's to become emotionally and physically overwhelmed. From the sheer physical labor of caring for someone who can't do ordinary tasks for themselves to the emotional toll of watching a loved one go downhill, your job is extremely stressful, draining and exhausting. It's important to maintain a delicate balance between the patient's and your own needs.

The Alzheimer's Association lists 10 warning signs of caregiver stress to look out for and suggests ways to take care of yourself.

The Warning Signs of Caregiver Stress

• Denial
• Anger
• Social withdrawal
• Anxiety
• Depression
• Exhaustion
• Sleeplessness
• Irritability
• Lack of concentration
• Health problems

Steps to Take to Reduce Stress

• Continue to educate yourself on Alzheimer's and care giving techniques. Stay in touch with the patient's doctor about treatments, and read the Alzheimer's Association's newsletters and books on care giving.

• Talk to other caregivers in a support group. Openly discuss your feelings and concerns and ask them for tips on caring, managing and coping.

• Do legal and financial planning as soon as possible after the diagnosis and review your plans as the situation changes. Knowing these things are in order helps relieve anxiety.

• Ask for and accept help from family, friends and community resources.

• Don't expect to be the perfect caregiver all the time. Arrange ways to give yourself a daily break from care giving and a longer respite every few weeks. And don't blame yourself if you lose patience or get annoyed. You're only human.

• Reward yourself with lunch out with a friend, a shopping trip or something you enjoy that takes you away from the care giving role if only for a few hours.

• Take care of yourself by eating right, exercising, socializing and getting enough rest. If the person's sleeplessness keeps you awake, get someone in during the day so that you can nap.

• Seek a physician's help if you recognize several of the warning signs in yourself.

  

The Warning Signs of Alzheimer's

According to the Alzheimer's Association, a person exhibiting several of the following symptoms should see a family doctor, a gerontologist or a neurologist immediately for a complete exam.

• Has memory loss or the inability to concentrate affected job skills?
• Has performing familiar tasks, such as setting the table, become difficult?
• Are there problems with not finding the right word or substituting inappropriate words?
• Is there disorientation to time and place, even in familiar surroundings?
• Has the person been showing poor or decreased judgment?
• Are there problems with abstract thinking, for example, in performing basic calculations or thinking a problem through?
• Has misplacing things and then finding them in odd places become common?
• Are changes in mood or behavior rapid and without apparent cause?
• Have there been dramatic changes in personality?
• Is there a loss of initiative and disinterest in normal activities?

For More Information: Please ask your attending physician on your next visit.