Dementia is a brain disorder that seriously affects a person’s ability to carry out daily activities. Alzheimer’s disease (AD) is the most common form of dementia among older people. It involves the parts of the brain that control thought, memory, and language. Every day scientists learn more, but right now the causes of AD are still unknown, and there is no cure.
Scientists think that up to 4 million Americans suffer from AD. The disease usually begins after age 60, and risk goes up with age. While younger people also may get AD, it is much less common. About 3 percent of men and women ages 65 to 74 have AD, and nearly half of those age 85 and older may have the disease. It is important to note, however, that AD is not a normal part of aging.
AD is named after Dr. Alois Alzheimer, a German doctor. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness.
He found abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Today, these plaques and tangles in the brain are considered hallmarks of AD.
Scientists also have found other brain changes in people with AD. There is a loss of nerve cells in areas of the brain that are vital to memory and other mental abilities. There also are lower levels of chemicals in the brain that carry complex messages back and forth between nerve cells. AD may disrupt normal thinking and memory by blocking these messages between nerve cells.
What causes AD?
Scientists do not yet fully understand what causes AD. There probably is not one single cause, but several factors that affect each person differently. Age is the most important known risk factor for AD. The number of people with the disease doubles every 5 years beyond age 65.
Family history is another risk factor. Scientists believe that genetics may play a role in many AD cases. For example, familial AD, a rare form of AD that usually occurs between the ages of 30 and 60, can be inherited. However, in the more common form of AD, which occurs later in life, no obvious family pattern is seen. One risk factor for this type of AD is a protein called apolipoprotein E (apoE). Everyone has apoE, which helps carry cholesterol in the blood. The apoE gene has three forms. One seems to protect a person from AD, and another seems to make a person more likely to develop the disease. Other genes that increase the risk of AD or that protect against AD probably remain to be discovered.
Scientists still need to learn a lot more about what causes AD. In addition
to genetics and apoE, they are studying education, diet, environment, and
viruses to learn what role they might play in the development of this disease.
What are the symptoms of AD?
AD begins slowly. At first, the only symptom may be mild forgetfulness. People with AD may have trouble remembering recent events, activities, or the names of familiar people or things. Simple math problems may become hard to solve. Such difficulties may be a bother, but usually they are not serious enough to cause alarm.
However, as the disease goes on, symptoms are more easily noticed and become serious enough to cause people with AD or their family members to seek medical help. For example, people in the later stages of AD may forget how to do simple tasks, like brushing their teeth or combing their hair. They can no longer think clearly. They begin to have problems speaking, understanding, reading, or writing. Later on, people with AD may become anxious or aggressive, or wander away from home. Eventually, patients need total care.
An early, accurate diagnosis of AD helps patients and their families plan for the future.
It gives them time to discuss care options while the patient can still take part in making decisions. Early diagnosis also offers the best chance to treat the symptoms of the disease.
Today, the only definite way to diagnose AD is to find out whether there are plaques and tangles in brain tissue. To look at brain tissue, doctors must wait until they do an autopsy, which is an examination of the body done after a person dies. Therefore, doctors must make a diagnosis of "possible" or "probable" AD.
At specialized centers, doctors can diagnose AD correctly up to 90 percent of the time. Doctors use several tools to diagnose "probable" AD:
Information from the medical history and test results help the doctor rule out other possible causes of the person's symptoms. For example, thyroid problems, drug reactions, depression, brain tumors, and blood vessel disease in the brain can cause AD-like symptoms. Some of these other conditions can be treated successfully.
Recently, scientists have focused on a type of memory change called mild cognitive impairment (MCI). MCI is different from both AD and normal age-related memory change. People with MCI have ongoing memory problems but do not have other losses like confusion, attention problems, and difficulty with language. Scientists funded by the National Institute on Aging (NIA) are conducting the Memory Impairment Study to learn whether early diagnosis and treatment of MCI might prevent or slow further memory loss, including the development of AD.
How is AD treated?
AD is a slow disease, starting with mild memory problems and ending with severe brain damage. The course the disease takes and how fast changes occur vary from person to person. On average, AD patients live from 8 to 10 years after they are diagnosed, though the disease can last for as many as 20 years.
No treatment can stop AD. However, for some people in the early and middle stages of the disease, the drugs tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon), or galantamine (Reminyl) may help prevent some symptoms from becoming worse for a limited time. Also, some medicines may help control behavioral symptoms of AD such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these symptoms often makes patients more comfortable and makes their care easier for caregivers.
Developing new treatments for AD is an active area of research. Scientists are testing a number of drugs to see if they prevent AD, slow the disease, or help reduce behavioral symptoms.
Scientists are testing two different types of nonsteroidal anti-inflammatory drugs (NSAIDs) to find out if they slow the disease. There is evidence that inflammation in the brain may contribute to AD damage. Scientists believe that anti-inflammatory drugs such as NSAIDs might help slow the progression of AD. Rofecoxib (Vioxx) and naproxen (Aleve) are two NSAIDs currently being studied.
Research has shown that vitamin E slows the progress of some consequences of AD by about 7 months. Scientists now are studying vitamin E to learn whether it can prevent or delay AD in patients with MCI.
Recent research suggests that ginkgo biloba, an extract made from the leaves of the ginkgo tree, may be of some help in treating AD symptoms. There is no evidence that ginkgo will cure or prevent AD. Scientists now are trying to find out whether ginkgo biloba can delay or prevent dementia in older people.
Research also is under way to see if estrogen reduces the risk of AD or slows the disease. One study showed that estrogen does not slow the progression of already diagnosed disease, but more research is needed to find out if it may play another role. For example, scientists now are trying to find out whether estrogen can prevent AD in women with a family history of the disease.
Is there help for caregivers?
Most often, spouses or other family members provide the day-to-day care for people with AD. As the disease gets worse, people often need more and more care. This can be hard for caregivers and can affect their physical and mental health, family life, job, and finances.
The Alzheimer's Association has chapters nationwide that provide educational programs and support groups for caregivers and family members of people with AD.
Research
Scientists have come a long way in their understanding of AD. Findings from years of research have begun to clarify differences between normal age-related memory changes, MCI, and AD. Scientists also have made great progress in defining the changes that take place in the AD brain, which allows them to pinpoint possible targets for treatment. These advances are the foundation for the National Institutes of Health (NIH) Alzheimer’s Disease Prevention Initiative, which is designed to:
Overcoming
Resistance
As you probably already know, even the simplest request (trying to get your family member to come to the center or go to a doctor's appointment) can turn into a battle if your loved one resists. The most important thing to remember in this situation is that there are different underlying reasons for the resistance. The following are common causes of resistance and suggestions for how to handle them. More causes and suggestions will follow in next month's issue.
Denial. Denial is a defense mechanism that everyone uses, and your loved one is no exception. Some dementia patients deny that there is any problem. When confronted with resistance based on denial, try to rephrase your demand.
"I agree that you feel great and don't need to go to the doctor. But isn't Dr. X such a good doctor? Last time you went he was so nice! I would feel so good if we could go see him, just to make sure that your blood pressure is okay. I would feel good knowing that your health is perfect."
Fear. Fear is often the cause of resistance, but may often look like anger or frustration. When dealing with someone who is resisting out of anxiety or fear, try first of all to empathize with his or her feelings and then express your own. "Are you worried the doctor might find something wrong? You must be afraid she'll say something you don't want to hear. I love you and just want you to go in and get checked out, so we can be sure that everything is okay."
Pride. Pride is very important to your impaired loved one, and you must be sensitive to the fact that dementia leads to an incredible loss of control for your family member. Try to find small ways to let the person have control. "I know you don't enjoy going to the doctor's, but let's go out to lunch afterwards. Would you like to go to Restaurant A or Restaurant B after your appointment?"
Timing. Sometimes certain changes can just be too much too soon for your loved one, even if it's something as simple as having an in-home worker come each day. If your loved one is simply not ready, consider waiting on, but not giving up on, your idea. "I can see you're not ready to have someone come every day to visit. But let's just have Sandy over today for coffee and we can get to know her a bit. You and I will talk about having her come over more regularly next week."
Disagreement. Like everybody else, a person with dementia will sometimes simply disagree with your idea. It is important to address their refusal, whether they express it with body language, behavior, or an emphatic "no!" As most caregiver s have already discovered, trying to change an impaired person's mind by arguing, reasoning, or citing evidence is a lost cause. All you will accomplish is to upset the person, escalate the conflict, and cause stress for yourself. An important first step in dealing with simple disagreement is for you as caregiver to take a moment to stop and reflect on how you're going to proceed. Stay calm and respond to the person's refusal by acknowledging and validating their feelings. "Oh, you don't like that idea at all, do you?" Next, agree on something--anything! The goal is not to have the person agree with your initial suggestion, but to establish common ground to build upon.
Loss. A person with Alzheimer's has experienced many losses, and continues to do so throughout the course of their disease. One of the most major losses is the ability to clearly communicate about their feelings. Any event may trigger overwhelming feelings of loss and grief. Unable to deal with these feelings, the impaired person may respond by resistance. The best way to handle this is validate the person's emotions and show caring with love, a soft voice, warm feelings, and a gentle touch. After giving the person some emotional comfort, offer them some control over the situation they were resisting. "I know it's hard for you to give up driving, but I'll drive you to your appointment today. Afterwards, we'll go out for a snack. Do you want an ice cream cone or a piece of pie?"
Stubborn Personality. It is common for family members and other caregivers to dismiss an impaired person's refusal as a result of "stubbornness." This may be perfectly true, but it is not productive to focus on it. If there is a pattern of family dynamics or other behavior patterns which might come between you and your loved one, consider having a third person intervene in the situation, such as another family member, a paid caregiver, or a physician. And don't blame yourself! You are doing a great job and should be proud of yourself.
Adapted from materials produced by the Alzheimer's Association.
Wandering Prevention
As every caregiver knows, each person with dementia has different needs and exhibits different behaviors. For this very reason, be prepared for your family member to wander. Just because someone has never wandered before is no reason to assume they won't start. Wandering is one of the most dangerous behaviors exhibited in dementia, because the person can be lost or injured. Of course, if your loved one is a regular wanderer, you already know that you have to be vigilant in protecting their safety.
Please consider the following ideas to prevent dangerous wandering behavior:
· Encourage movement, exercise, and activity. Make the person's walking behavior a shared activity, or allow the person to wander in a safe, controlled area. Any physical activity, like walking, is beneficial to the dementia patient, and indulging this behavior safely may prevent more dangerous episodes.
· Be aware of hazards. Take a look around your home and immediate surroundings for dangerous elements, such as fences, gates, swimming pools or other bodies of water, bus stops, heavy traffic areas, steep stairways, and high balconies. Make any necessary adjustments to your environment.
· Communicate with your loved one. Remind the impaired person of whom they are, who you are, and that they are in a safe place. Constantly reassure the person, who may feel lost, homesick, and abandoned. Try to determine if any particular event trigger s the wandering episodes; become a detective.
· Involve your neighbors. Inform your neighbors of your family member's condition and keep a list of their names and phone numbers handy. Teach them how to approach your loved one in a non-threatening way, such as using their name, identifying themselves, approaching from the front, and using gentle touch to guide and orient them.
· Keep a current photo. Remember to keep a current, clear snapshot of your loved one, along with a written physical description. This will be useful for involving your neighbors, if they don't already know your family member, and is absolutely essential for any police involvement.
Adapted from materials produced by the Alzheimer's Association.
Frequently Asked Questions
about Alzheimer's Disease
Isn't Alzheimer's disease just losing your memory?
No. Although memory loss is the most widely known symptom of Alzheimer's, dementia is the decline of all intellectual functioning, which can include learning, judgment, language skills, and eventually physical decline.
What's the difference between Alzheimer's disease and
dementia?
Dementia is the medical term for the loss of intellectual functioning, characterized by loss of memory, cognitive functions, and judgment. Alzheimer's disease is the number one cause of dementia. Other dementing illnesses include Huntington's, Parkinson's, and AIDS-related dementia, and Pick's disease, among others.
"Senility" is an outdated term to describe what we now know to be dementia. Senility is not a normal or healthy part of aging.
Isn't Alzheimer's disease just another way of saying that
someone's crazy?
No. Alzheimer's disease is a cognitive disease that results in memory loss, deterioration of intellectual function, and loss of judgment. Although people with Alzheimer's disease can sometimes exhibit behavior that seems strange, it is due to the brain damage from the disease, and is not a symptom of mental or emotional illness.
Not that many people get Alzheimer's Disease, right?
Wrong. Approximately five million people in the United States alone have Alzheimer's disease. Alzheimer's disease is the fourth leading cause of death for adults.
What is someone with Alzheimer's disease like? How do they
behave?
Behavior depends on the individual and the stage of the disease. Contrary to popular stereotypes, people with dementia are not usually crazy or violent. In fact, keeping a person with Alzheimer's active and stimulated is one of the biggest tasks for a caregiver. Without a caregiver's intervention, an Alzheimer's patient can get depressed or isolated easily. Some of this is the function of the disease process itself, but some of it stems from a deep sense of loss.
As you might imagine, people with dementia get confused very easily and often mistake one person for another. We find it best to respond to odd questions or statements by trying to discern the emotion underneath. For example, if someone is at home but keeps saying they want to go home, they are probably feeling lost or scared. Telling them "I'm here with you, you're going to be okay," is much more productive than saying, "But you are home!" over and over.
People with Alzheimer's often repeat the same stories or ask the same questions over and over, a function of their memory loss. It is best to remain patient and answer the question in a low-pitched, gentle voice. Respond to the emotion underneath the question or story. You can also try to redirect the person's attention.
Working with Alzheimer's means always looking for clues and constantly adjusting your approach. The patient can't change, so the staff member has to.
I've heard Alzheimer's disease describes as a "walking
funeral." Is that what it's really like?
Of course, no one is happy to hear a diagnosis of Alzheimer's for themselves or a loved one. Losing cognitive functioning and memory progressively is very painful. However, we strongly believe that there is life after diagnosis. When a caregiver learns to take each moment as it come, and accept who their loved one is now, there can be moments full of love, laughter, and fun.
People with Alzheimer's disease may not be exactly the people they were before the disease, but they are indeed people--with emotions, interests, and personality.
Do people really die from Alzheimer's disease, or do other
things kill them first?
Yes, people do die from Alzheimer's--it is a progressive, debilitating, and terminal disease. Because the victims of Alzheimer's are usually elderly, some do die from unrelated conditions, such as diabetes, hypertension, or stroke. But Alzheimer's disease is the fourth leading cause of death in adults. There is no cure or treatment yet.
What causes Alzheimer's disease?
No one knows at this point. There have been many well-publicized research breakthroughs lately, but the answer (and the cure) is still some time away. Despite recent discoveries, researchers still don't know what causes Alzheimer's. There is not treatment or cure yet.
If you know someone who you think might have Alzheimer's, it is important to have a clinical diagnosis. Some forms of dementia are, unlike Alzheimer's, reversible and treatable.
Is there a cure for Alzheimer's disease? When will there be?
Unfortunately, no. Alzheimer's disease has no cure or treatment. There have been many well-publicized research breakthroughs lately, but the answer (and the cure) is still some time away. Despite recent discoveries, researchers still don't know what causes Alzheimer's. There is not treatment or cure yet.
How long does someone live after getting Alzheimer's disease?
Individuals can live from five to twenty years after a diagnosis of Alzheimer's. That's why careful financial and legal planning is so crucial for families.