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About Alzheimer's |
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Frequently Asked Questions
- What is Alzheimer's disease?
Dr. Alois Alzheimer, a German physician, first described the disease in 1906. He observed in the autopsy of a woman with dementia two kinds of abnormal structures in the brain that are now recognized as hallmarks of Alzheimer's disease-amyloid plaques and neurofibrillary tangles. Since then, researchers have learned much about how these structures form, but they do not know exactly what role each structure plays in the loss of brain cells.
Alzheimer's disease (pronounced AHLZ-hi-merz) is a disorder that destroys cells in the brain. The disease is the leading cause of dementia, a condition that involves gradual memory loss, decline in the ability to perform routine tasks, disorientation, difficulty in learning, loss of language skills, impairment of judgment, and personality changes. As the disease progresses, people with Alzheimer's become unable to care for themselves. The loss of brain cells eventually leads to the failure of other systems in the body. The rate of progression of Alzheimer's varies from person to person. The time from the onset of symptoms until death ranges from 3 to 20 years. The average duration is about 8 years.
- What is dementia?
Dementia is an umbrella term used to describe the loss of cognitive or intellectual function. Many conditions can cause dementia. Dementia related to depression, drug interactions, and thyroid and other problems may be reversible if detected early. That's one of the reasons it's important to obtain a professional assessment, so that the actual cause can be identified and proper care provided. Several other diseases also cause dementia, such as Parkinson's, Creutzfeldt-Jakob, Huntington's, and multi-infarct or vascular disease, caused by multiple strokes in the brain.
- Isn't memory loss a natural part of aging?
Yes and no. Many healthy individuals are less able to remember certain kinds of information as they get older. But the symptoms of Alzheimer's disease involve more than simple lapses in memory. People with Alzheimer's experience difficulties in communicating, learning, thinking, and reasoning that can have an impact on a person's work and social and family life. Alzheimer's is a disease that destroys brain cells -- which is not a normal part of aging.
- How many people are affected by Alzheimer's disease?
Studies have shown that the greatest known risk for developing Alzheimer's is increasing age. As many as 10 percent of people 65 years of age and older have Alzheimer's, and nearly 50 percent of people 85 and older have the disease. A family history of the disease is another known risk. Having a parent or sibling with the disease increases an individual's chances of developing Alzheimer's.
Scientists have identified three genes that cause rare, inherited forms of the disease that tend to occur before age 65. Investigations of these genes have provided important clues about the biology of Alzheimer's. Researchers have also identified one gene that raises the risk of the more common form of Alzheimer's that affects older people.
- What are the warning signs?
The Alzheimer's Association has developed a list of warning signs that include common symptoms of Alzheimer's disease (some also apply to other dementias). Individuals who exhibit several of these symptoms should see a physician for a complete examination.
- What causes Alzheimer's disease?
Scientists still are not certain. Age and family history have been identified as potential risk factors. Researchers are exploring the role of genetics in the development of Alzheimer's, but most agree the disease is likely caused by a variety of factors. Each year, scientists are uncovering important new clues about potential causes of the disease, which is helping to generate more accurate diagnostic tests and better treatment options for affected individuals.
- How is Alzheimer's disease diagnosed?
There is no single test to detect Alzheimer's disease. Currently, the ability to detect the abnormal structures in the brain of a living person does not exist. Therefore, a diagnosis is based on a thorough evaluation of symptoms and an assessment of an individual's health.
A physician will use a variety of tests to assess memory and thinking skills and will usually ask for input from a family member about changes in an individual's memory or behavior. A physician will also conduct a thorough physical exam, review the individual's medical history, and order various laboratory tests that may require blood or urine samples or brain imaging scans.
All of this information can help physicians identify the most probable cause of symptoms and rule out treatable conditions that may cause memory problems or other dementia symptoms. These include depression, adverse drug reactions, and nutritional deficiencies.
Researchers continue to investigate ways to improve diagnostic tools. New strategies may lead to earlier diagnoses and, therefore, earlier treatment.
- How does Alzheimer's disease progress?
Alzheimer's disease causes the formation of abnormal structures in the brain called plaques and tangles. As they accumulate in affected individuals, nerve cell connections are reduced. Areas of the brain that influence short-term memory tend to be affected first. Later, the disease works its way into sections of the brain that control other intellectual and physical functions.
Alzheimer's disease affects people in different ways, making it difficult for medical professionals to predict how an individual's disease will progress. Some experts classify the disease by stage (early, middle, and late). But specific behaviors and how long they last vary greatly, even within each stage of the disease.
As more is learned about the progression of the disease, new assessment scales are being developed to help physicians track, predict, and treat symptoms of Alzheimer's disease.
- Does Alzheimer's disease run in families?
The evidence is not clear. Cases where several members of a single family have been diagnosed with Alzheimer's are rare (except in families who have a history of early-onset Alzheimer's, a form of the disease that typically strikes middle-aged members of the same family). Much more common is the situation where a single family member is diagnosed with Alzheimer's disease late in life.
- Can Alzheimer's disease occur in younger adults?
Yes, though less frequently. The disease can occur in people in their 30s, 40s, and 50s. However, most people diagnosed with Alzheimer's are older than 65. The early onset form of the disease that strikes younger people accounts for less than 10 percent of all reported cases. Scientists believe this variation of the disease may be genetically transmitted across multiple generations of the same family.
- What treatment is available?
There are currently five drugs approved by the U.S. Food and Drug Administration for treating Alzheimer's disease symptoms--tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl), and memantine. About half of the people taking these medications in the early stages of the disease show modest and temporary improvement in memory and thinking skills. Vitamin E is often prescribed because it may inhibit molecular activity contributing to brain cell damage. Other medications may be prescribed to treat such symptoms as agitation, anxiety, depression, and poor sleep.
Many care strategies and activities can be used to manage behavior, prevent agitation, and improve the quality of life for people with the disease. Such strategies may also lessen the stress that caregivers often experience.
- What is being done to find a cure or prevention?
Alzheimer research is being tackled from many sides. Pharmaceutical companies, the U.S. federal government, and the Alzheimer's Association are funding research to learn more about the disease process and to find compounds that will alleviate symptoms and prevent or cure the disease.
Researchers are pursuing several lines of investigation for developing new treatments that may delay onset or slow progression of the disease. Many scientists believe that in the years to come we will have a regimen of drugs rather than a "magic bullet" for treating people with Alzheimer's disease and related disorders.
- What should I do if I feel overwhelmed by my diagnosis?
1. Contact the Alzheimer's Association. Our 81 Alzheimer's Association chapters nationwide provide programs and services for people with Alzheimer's and their families. When talking with a chapter representative, ask the following questions: What kind of information do you have available? What kind of support groups do you offer? What other programs and services are available in the area? Who can help us plan for the future?
2. Talk to your physician. As Alzheimer's disease progresses, you may experience physical and behavioral changes. Some of these changes may be treatable, so ongoing communication with a physician who understands the disease is important. When talking with a doctor, ask:
Are additional tests needed to confirm the diagnosis? Can symptoms be treated? How much do these treatments cost? Are there side effects? Are the treatments reimbursable? What else can be done to alleviate symptoms? Are there clinical drug trials being conducted in the area?
3. Plan for the future. Soon after learning the diagnosis, it is important to start putting legal and financial documents, such as a living will and power of attorney, into place. Ask legal and financial professionals:
What documents are used for persons with dementia? What is legal capacity, and how do you determine it? What long-term care services are covered by or health insurance policies?
4. Locate care services. At some point, you may need assistance in the home or be interested in alternative care options. Case managers and social workers from the Association or the Administration on Aging can help you learn more about local services and offer guidance in making decisions. They can help you address the following issues:
What services could help? What additional care options are available in this community? Is assistance available to help pay for these services? How do you find a facility/program that provides quality care?
- How can I participate in clinical drug trials?
You should consider a variety of factors before volunteering to participate in a clinical drug study. Here is some practical information about what may be involved and what to expect.
If your physician agrees that enrolling might be beneficial, read about the drugs in clinical trials and the eligibility requirements for participation. Be prepared to answer questions about your condition. When you or your caregiver contacts a study center, the initial conversation with researchers usually will include a phone interview to determine eligibility for the study. You may need to report when a diagnosis of Alzheimer's was made, if you are generally good health, and whether you reside at home or in a facility. The researchers also will want to know if a caregiver will be available to assist you throughout the duration of the study.
Additional testing may be needed to determine eligibility. You and your caregiver may receive an invitation to the study site for further screening, including an assessment of medical and psychiatric history, physical and neurological examinations, an imaging exam (usually a CT scan or MRI), and blood and urine tests.
Most drug studies provide these initial screening examinations, along with the medication used during the study, and routine follow-up examinations free of charge to the participant. Be aware of the responsibility involved in participating. Volunteering requires a serious time commitment from participants and caregivers.
Researchers expect drugs to be administered according to schedule, regular follow-up visits to the study site, and reports on any changes seen in the participant's condition or behavior. Understand that clinical studies determine the effectiveness and safety of a drug. Volunteering may involve some risk since the treatments being tested are still considered experimental. There is a chance the drug being tested will be helpful, and if the drug causes discomfort, a participant can drop out of the study at any time. Know that not all participants are given the medication being tested. In almost every study, participants are divided into two groups -- an experimental group (which receives the active drug) and a control group (which receives a placebo, or "sugar pill"). Neither the participants nor the researchers know who is taking the active drug and who is in the placebo group.
- Can I continue to live independently?
Whether you can continue to live independently depends on the progression of the disease and your remaining abilities. Some of these include your ability to handle money, do routine chores, make decisions, work, and drive and live safely. You may be able to live alone or with some assistance for some time. However, as the disease progresses, your care needs will increase, and you will need to rely on others for more help.
- How do I handle my anger?
It's normal to get angry. Your anger may arise from having the disease or from daily frustrations. The hard part is eventually letting go of that anger so it does not consume you. The best way to deal with your anger is to acknowledge that what you are feeling is anger and that it's okay. Then talk about it with your family, friends, or counselor; in an on-line chat room; or at a support group. Try to specify who or what is making you angry. Your local chapter of the Alzheimer's Association can refer you to counselors and support groups.
- Why should I participate in a support group?
Alzheimer's creates many challenges in your daily life, and a support group allows you to hear how others have coped or are coping with similar situations. Support groups are safe places to talk openly about difficult issues and feelings. And you may find that other group members will become a great source of comfort and encouragement. To find a support group near you, contact your local chapter of the Alzheimer's Association.
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