Alzheimer’s disease is perhaps one of the best-known illnesses associated with old age. A complex disease of the brain, Alzheimer’s now affects as many as 5.4 million people in the United States, according to the Alzheimer’s Association.
As the U.S. population grows older, the number of people with Alzheimer’s disease is expected to increase. But Alzheimer’s is not a normal or inevitable part of aging. It is a progressive disease that starts in one part of the brain and gradually invades other regions. As it progresses, Alzheimer’s destroys nerve cells within the brain and the connections between them, leaving behind clumps of proteins called plaques and twisted fibers in brain cells called tangles. Over time, this destruction erodes the most vital abilities of human nature: language, learning, memory and reason. Personality and behavior also are dramatically affected by Alzheimer’s disease.
Alzheimer’s disease is the most common cause of dementia in older people. The terms Alzheimer’s disease and dementia are often used interchangeably, but they are not the same. Dementia is a medical term used to describe deterioration in thinking ability severe enough to disrupt a person’s normal activities and relationships. Alzheimer’s disease usually begins in people 65 or older, but in rare instances it can affect individuals as young as 30. An estimated one in eight people over 65 have Alzheimer’s disease, and nearly half of people age 85 and older have the disease.
Women are more likely to develop Alzheimer’s disease than men, and women are more likely to bear the major responsibility for caring for family members with Alzheimer’s disease. More than twice as many women as men die of Alzheimer’s each year. This may be in part because women live longer than men, so more women have the disease at any time than men.
Early symptoms of the disease include forgetfulness, difficulty using or remembering words and difficulty concentrating. For some individuals, these early symptoms of Alzheimer’s disease may be mistaken for what many people consider “natural” symptoms of aging. But symptoms caused by Alzheimer’s disease worsen over time, while the short-term memory problems that trouble many people as they age do not progress to other more serious symptoms.
The rate that Alzheimer’s symptoms progress varies greatly from person to person. Some people have Alzheimer’s only for the last three years of life, while others may live with the disease for 20 years.
Symptoms of Alzheimer’s often are divided into mild, moderate, severe and very severe phases, though they are not distinct, and symptoms in these phases often overlap. The phases roughly correspond to periods when individuals can be relatively independent and need only supervision, when assistance is needed throughout the day, when they become dependent on others for daily activities and when motor functions are compromised.
Because Alzheimer’s damages the brain, unpredictable and uncharacteristic behavior is common. Anxiety, aggressiveness or compulsive behaviors—repetitious activities that the person doesn’t seem to be able to control or stop—are also common. People with Alzheimer’s may be disturbed by delusions—serious misunderstandings and false beliefs—such as believing family members are strangers. Mood swings and irritability are common and can escalate if not treated early. These behavioral patterns typically change as the disease progresses.
Mild Alzheimer’s symptoms include:
- Impaired memory of personal history
- Decreased ability to complete routine tasks, such as paying bills and planning dinner for guests
- Problems performing challenging mental arithmetic; for example, trying to count backward from 75 by 7s
- Difficulty recalling recent occasions or current events
- Subdued and withdrawn demeanor, especially in situations that are socially or mentally challenging
Moderate Alzheimer’s symptoms often add:
- Inability to recall important personal details, such as telephone numbers or addresses
- Confusion about the season, date or day of the week
- Problems with less challenging mental arithmetic; for example, counting backward from 20 by 2s
- Trouble choosing proper clothing for the occasion or season
- Usually no problems recalling their own names or the names of their spouse or children
- Usually no problems eating or using the toilet
Severe Alzheimer’s includes symptoms listed above plus:
- Loss of awareness of their surroundings and of most recent and experiences
- Occasional forgetfulness of the name of their spouses or primary caregivers
- Problems getting dressed properly; for example, may put their shoes on the wrong feet
- Sleep problems
- Trouble with toileting details, for example, flushing and properly disposing of toilet tissue
- Increased problems with urinary or fecal incontinence
- Significant personality changes and behavioral symptoms such as paranoia, delusions, hallucinations or compulsive repetitive behaviors
- A tendency to wander and become lost
Very severe Alzheimer’s includes:
- Problems speaking clearly
- Trouble eating and using the toilet independently; general urine incontinence
- Loss of the ability to walk without assistance
- Loss of the ability to smile, sit without support and hold head upright
- Reflex problems
- Rigid muscles and impaired swallowing
The major risk factor for Alzheimer’s disease is age. According to the Alzheimer’s Association, 13 percent of people age 65 and older and 45 percent of people 85 and older have Alzheimer’s disease.
People who have significant memory problems but no other thinking problems and are able to perform their usual daily activities are at increased risk for later developing Alzheimer’s. This condition, called mild cognitive impairment (MCI), occurs in as many as 10 to 20 percent of people age 65 and older. And among the people who visit a doctor due to MCI symptoms, nearly half will develop dementia symptoms in three to four years. On the other hand, some of these individuals will never develop Alzheimer’s, and sometimes medications, medical problems or psychosocial issues are found responsible. Your health care professional can help assess this risk factor.
Although researchers still don’t know for sure what typically causes Alzheimer’s disease, most believe it is related to the abnormal processing of normal brain proteins, particularly amyloid precursor protein and tau. For some reason, later in life these proteins, which serve a normal function, begin to be abnormally processed. When this happens, the abnormally processed proteins assemble themselves into clumps, which cause damage to brain cells and interfere with thinking. These clumped proteins are called neurofibrillary tangles and senile (amyloid) plaques (often simply referred to as tangles and plaques), and eventually destroy critical parts of the brain.
Family history is also a risk factor for Alzheimer’s. For example, young onset Alzheimer’s disease, a rare form of the disease that strikes people between the ages of 30 and 60, is often inherited. Only about 5 percent of Alzheimer’s disease is the true familial inherited form. Genetic mutations causing Alzheimer’s disease have been identified in some of these families.
So far, only one genetic factor has been identified that makes late-life Alzheimer’s disease more likely—a gene that makes the APOE epsilon 4 (APOE-e4) form of the apolipoprotein E (ApoE) protein. Scientists believe there are numerous additional Alzheimer’s risk genes, but others haven’t yet been convincingly proven.
Other theories link the disease’s development to the death of cells critical for maintaining levels of certain brain chemicals required for normal thought processes; vascular factors that affect the health of blood vessels in the brain; and severe head injury.
In addition, there is evidence that risk factors for cardiovascular disease, such as a sedentary lifestyle, smoking, diabetes and obesity, may increase risk for Alzheimer’s disease. On the positive side, there is some evidence that higher levels of education early in life and more social, mental and physical activities in older age may help prevent the disease.
To date, there is no cure for Alzheimer’s, but there are some drug and nondrug treatments that may help with both behavioral and cognitive symptoms.
If you think you have Alzheimer’s or suspect someone you know might be experiencing symptoms, it’s important to consult with medical professionals as soon as possible. Early diagnosis can determine whether other medical conditions are causing the symptoms. It is important to distinguish Alzheimer’s from other diseases causing dementia and from depression and psychiatric illness. Health care professionals can make sure that medications you are taking aren’t causing or worsening the problem.
Because Alzheimer’s eventually affects an individual’s ability to care for him or herself, short- and long-term planning is important. The earlier you can develop a support system, as well as review financial and medical management strategies, the better. Plus, the sooner someone with Alzheimer’s begins taking medications to minimize or stabilize symptoms, the better.
Issues to consider include: caregiving support and establishing a power of attorney and a living will, as well as making end-of-life decisions. Alzheimer’s disease is a serious illness that usually requires lifestyle changes and major adjustments for both the person with Alzheimer’s and the family members. Early planning and involving all family members can avoid crises and can use financial resources optimally for quality of life.
The Alzheimer’s Association and the support groups it sponsors can provide additional information about Alzheimer’s disease and the needs you and your family are likely to face. It’s natural to feel overwhelmed by such a diagnosis. These organizations, together with your medical team, can help you cope.
Alzheimer’s is only one of many diseases that can cause dementia. Because these diseases often cause similar symptoms, a comprehensive evaluation is essential to ensure the correct diagnosis and optimal treatment. Alois Alzheimer, a German physician, first identified Alzheimer’s disease in 1906. During an autopsy of brain tissue of a woman who had suffered what was believed to be a mental illness, Dr. Alzheimer found the unique plaques and twisted fibers now considered a hallmark of the disease.
Today, a brain autopsy after death remains the only definitive way to diagnose Alzheimer’s disease. Autopsy should be considered because confirming the cause of dementia can be important for the health care of future generations. Because there is no simple or single test available to diagnose the disease, Alzheimer’s disease sometimes goes unrecognized and misdiagnosed in primary care settings. However, according to the Alzheimer’s Association, a physician experienced in cognitive evaluations using validated clinical criteria can diagnose Alzheimer’s during life with more than 90 percent accuracy.
Not all dementia-related problems are caused by Alzheimer’s disease; some are caused by depression, unintended medication interactions, thyroid problems and other health conditions. However, any symptoms associated with memory, judgment or difficulty performing daily tasks, as well as any abnormal behavior or mood swings, should be discussed with a health care professional.
According to the Alzheimer’s Association, the following 10 symptoms are warning signs of Alzheimer’s disease:
- Memory loss: Forgetting recently learned information.
- Difficulty performing familiar tasks: Trouble remembering how or where to find your car even though it’s parked in the same place every day; not being able to remember how or where to brush your teeth.
- Problems with language: Forgetting common and simple words used in everyday language; for example, instead of toothbrush, you might say: “that thing for my mouth.” In addition, people suffering from Alzheimer’s may begin to substitute inappropriate words when they talk.
- Disorientation about time and place: Getting lost frequently in familiar places. For instance, you may not recognize your own street and may wander endlessly looking for your house.
- Poor or decreased judgment: Dressing inappropriately, such as wearing pajamas to the grocery store or showing up at work in a bathrobe and slippers. Another sign is giving large sums of money to telemarketers.
- Challenges with planning and problem-solving: Basic calculations that were once easily mastered are sometimes impossible. Some people may experience changes in their ability to develop and follow a plan. They may have trouble following a once-familiar recipe or managing monthly bills. They may also have trouble concentrating and take much longer to do things.
- Misplacing things: Placing things in obviously inappropriate locations. For example, someone with Alzheimer’s may put a watch in the toaster but have no memory of doing this.
- Dramatic and sometimes abrupt changes in personality or mood: These changes may occur over time and are more pronounced than the mild personality or mood changes that may accompany aging. A person may go from calm to very angry for no apparent reason.
- Withdrawal from work or social activities: Someone with Alzheimer’s may lose interest in one or more of their usual endeavors and fail to regain that interest.
The list of warning signs above departs significantly from signs considered a part of the normal aging process. These include:
- Benign forgetfulness: Forgetting where you put certain items is a normal part of aging. For example, you may put your keys in the wrong place, but you aren’t likely to put them in the refrigerator, as someone with Alzheimer’s might.
- Decreased motor skills: Many people begin to lose some agility as they age. Thus, it may take longer to perform certain motor-related functions such as walking or lacing your shoes. Other ailments such as arthritis may also play a role.
Primary care physicians as well as neurologists, psychiatrists and geriatricians typically diagnose and treat Alzheimer’s disease. An evaluation usually requires two or more visits of 30 minutes or more, plus testing. The diagnostic process includes a thorough medical history and family interview, including questions about the person’s current mental and physical conditions with an emphasis on any noticeable physical, mental and emotional changes. The physician will want to get information from someone who knows the person well, since individuals may not recognize their own limitations or symptoms. A health care professional should also ask for a list of prescription drugs and take a family health history. Routine tests, such as blood work, blood pressure screening and urine tests, will also be necessary as part of a comprehensive physical evaluation.
A mental status evaluation will help assess your sense of time and place, memory, comprehension and communication abilities. Part of the evaluation may include asking you to perform simple calculations and answer other simple memory-related questions. Often standardized neuropsychological testing consisting of answering questions and drawing pictures will be performed to better understand the nature and severity of cognitive problems and provide clues to the cause. A psychiatric evaluation also may be performed to assess mood and behavior.
You will undergo a neurological examination and tests of the brain. Computerized tomography (CT) and magnetic resonance imaging (MRI) scans give a picture of the brain that enables your doctor to see any abnormalities within your brain including stroke; however, these results are often inconclusive since the loss of brain cells may be mild early in the disease and the plaques and tangled neuron fibers don’t show up on these scans. But a brain scan can identify other neurological problems that might cause symptoms like Alzheimer’s, such as stroke.
Position emission tomography (PET) scanning, another scanning procedure, can sometimes help physicians distinguish Alzheimer’s from other causes of dementia. The test may be covered under Medicare, but only in certain situations.
Even when the doctor makes a diagnosis of Alzheimer’s disease, there are varying degrees of certainty:
- Probable Alzheimer’s disease dementia. This diagnosis means your doctor has ruled out all other dementia disorders and your symptoms strongly point to Alzheimer’s disease.
- Possible Alzheimer’s disease dementia. This diagnosis indicates Alzheimer’s is the primary cause of the dementia symptoms, but another disorder or disease may be present as well and could affect the progression of Alzheimer’s. This indicates a lesser degree of certainty.
- Definite Alzheimer’s disease dementia. This diagnosis means that there is physical evidence of plaques and tangles or that a gene mutation has been found that causes Alzheimer’s. This diagnosis indicates complete certainty, but except in unusual cases, it can only be made when the brain is examined after death.
Physicians sometimes find significant memory loss that is too mild to affect daily function. This is called mild cognitive impairment. This can be an indication that Alzheimer’s will develop later and should be closely monitored by a health professional.
With a diagnosis as shattering as Alzheimer’s, it’s a good idea to take some time to come to terms with the news. Support groups and Alzheimer’s-related organizations can offer suggestions for working through the diagnosis. Once you decide to share your diagnosis with family and friends, try to be open to their concerns and offers of help. Conversely, if someone close to you tells you about an Alzheimer’s diagnosis, be sensitive to his or her needs and ask what you can do to help.
While there is no cure for Alzheimer’s disease, medical treatments can help alleviate some of the behavior and cognitive symptoms.
There is increasing evidence that optimal treatment of medical conditions such as hypertension and diabetes is critical to improve outcomes in Alzheimer’s. In addition, it is important to keep physically active with regular exercise of 30 minutes or more on most days. Since people with Alzheimer’s tend to withdraw from activities, it is important to encourage social interactions. These steps can improve mood, thinking abilities and quality of life.
The FDA has approved two classes of drugs to treat the cognitive symptoms of Alzheimer’s disease. Four are in a class known as acetylcholinesterase inhibitors (also called cholinesterase inhibitors). They work by inhibiting an enzyme called acetylcholinesterase which normally breaks down acetylcholine, a key neurotransmitter involved in cognitive functioning. Levels of acetylcholine typically drop sharply in people with Alzheimer’s.
The fifth drug, memantine (Namenda), is an N-methyl-D-aspartate (NMDA) receptor agonist and is approved for the treatment of moderate to severe Alzheimer’s. It works by blocking excess amounts of a brain chemical called glutamate that is involved in information processing, storage and retrieval.
While the drugs can’t restore dead brain cells, they can slow or temporarily forestall the inevitable decline. Usually these medications are easily tolerated. However, side effects like diarrhea or loose stools, nausea, vomiting, loss of appetite and weight loss sometimes occur. Occasionally, there can be muscle cramps, increased nasal secretions or urinary incontinence. Some people may have sleep disturbances, often with strikingly vivid dreams. Approved drugs are:
- Donepezil (Aricept). This drug can help boost thinking abilities and reduce some general function and behavior problems of Alzheimer’s without significant side effects. When side effects do occur, they may include nausea, vomiting, loss of appetite and increased frequency of bowel movements. It is usually taken daily at bedtime and is approved for all stages of Alzheimer’s disease.
- Rivastigmine (Exelon). This drug can help improve thinking and memory, activities of daily living and general functional abilities. It is approved for mild to moderate Alzheimer’s disease. Side effects include nausea, vomiting, loss of appetite and increased frequency of bowel movements.
- Galantamine (Razadyne; previously marketed as Reminyl). This drug is approved for mild to moderate Alzheimer’s disease and can improve cognitive symptoms of the disease. Side effects include nausea, vomiting, loss of appetite and increase frequency of bowel movements.
- Memantine (Namenda). This is the only drug specifically approved for moderate to severe Alzheimer’s. It appears to work by regulating the activity of glutamate, a brain chemical involved in information storage, processing and retrieval. Some common side effects include dizziness, headaches, constipation and confusion.
Although typical of Alzheimer’s, any changes in behavior should be reported to a health care professional so any potential physical causes may be investigated. Behavioral symptoms may be influenced by a variety of factors, including:
- physical discomfort
- side effects from medication
- chronic pain
- nutritional problems
- problems with vision or hearing
- disruptive environment
- upset or unprepared caregiver
Whenever possible, health care professionals usually recommend nondrug interventions first to reverse behavioral symptoms. Some medications can make behavior-related symptoms worse. Caring for someone with memory loss can be challenging, but it can be easier if you learn the right skills. The Alzheimer’s Association and other community agencies can provide family members with the education necessary to become successful caregivers.
Nondrug treatment should include:
- Change the mood of the home environment.The lighting in a house or apartment, colors in the decor and level of noise in the immediate living area can have a significant impact on how someone with Alzheimer’s behaves and feels. Researchers found that certain types of lighting can make some people feel uneasy, while higher noise levels can induce frustration.
- Create a routine and stay mentally and physically active.Constructing a routine for everyday activities including dressing, bathing and cooking can reduce depression and help keep someone with Alzheimer’s active longer. It may also reduce the chances of wandering because the person is more likely to follow the daily routine. Studies show that walking or swimming 30 minutes daily has many benefits. Alzheimer’s experts also recommend people take up creative and pleasing activities that can bring more happiness into their life, such as painting, reading or singing.
- Keep socially engaged.It is natural for people with memory problems to withdraw from activities and become socially isolated. This often extends to their caregivers. It is important to combat these tendencies and strive to maintain and enhance social networks that are so important to quality of life and can also be used for assistance.
Research is under way to find additional medications that can help relieve the more intense behaviors associated with Alzheimer’s disease. For now, other drugs are used to treat symptoms such as agitation, aggression, delusions or depression, including:
- Antipsychotics such as olanzapine (Zyprexa), quetiapine (Seroquel), risperidone (Risperdal), aripiprazole (Abilify), ziprasidone (Geodon), and haloperidol (Haldol) address delusions, hallucinations, aggression, uncooperativeness and hostility. However, because some antipsychotic drugs have been associated with an increased risk of stroke and death in older people with dementia, the FDA says these drugs should be used with extreme caution.
- Anxiolytics such as oxazepam (Serax) and lorazepam (Ativan) help calm anxiety and agitation. Only the short-acting types are typically prescribed for Alzheimer’s, and they should be used intermittently, not regularly.
- Antidepressants, including citalopram (Celexa), paroxetine (Paxil), fluoxetine (Prozac), sertraline (Zoloft) and others help relieve low mood and irritability, as well as sleep changes associated with Alzheimer’s. The FDA warns that anyone who starts therapy with these drugs—particularly children and adolescents—should be watched closely for clinical worsening, suicidal tendencies or unusual changes in behavior.
- Vitamin E is sometimes prescribed for Alzheimer’s. Vitamin E is an antioxidant, a substance that may help protect nerve cells from the wear and tear that can lead to Alzheimer’s. In one large study, vitamin E slightly delayed Alzheimer’s patients’ loss of ability to carry out their daily activities and postponed their placement in residential care. However, other studies have shown that vitamin E has no benefit. Discuss this option with your health care professional. However, vitamin E can cause negative side effects when taken in large quantities or used with other medications, such as blood thinners.
Some people with Alzheimer’s use alternative treatments such as herbal remedies and dietary supplements, even though claims about the safety and effectiveness of some of these remedies are largely based on testimonials. There are some that have been tested in clinical trials and found not to be effective. If you’re considering any alternative treatments or want to advise a friend or loved one with Alzheimer’s about alternatives, it’s a good idea to discuss your interest with a health care professional (or suggest your friend talk to a health care professional) who can offer advice or discuss possible side effects.
Medicare Coverage for Alzheimer’s Expanded
Medicare, the government health insurance program for the elderly and disabled, provides coverage for some Alzheimer’s-related therapies. Specifically, the program:
- Pays for an annual prevention visit that includes screening for cognitive problems.
- Covers inpatient hospital care for people with Alzheimer’s disease who are age 65 and older, as well as some doctors’ fees and other medical items. In addition, Medicare Part D covers many prescription drugs.
- Pays for up to 100 days of skilled nursing home care. However, this care is provided under limited circumstances, and custodial long-term nursing home care is not covered.
- Pays for hospice care in the home, nursing facility or inpatient hospice facility for people with Alzheimer’s disease or dementia who are determined to be near the end of life.
For more information, go to www.medicare.gov.
Researchers suspect a healthy lifestyle, including controlling blood pressure, cholesterol and weight and getting moderate exercise, may help prevent or delay the onset of Alzheimer’s disease symptoms.
For instance, results of a recent study done at the University of Kansas Medical Center and published in the July 2008 issue of the journal Neurology showed that people with early Alzheimer’s disease who exercised regularly and had good cardiorespiratory fitness experienced less atrophy is key areas of the brain associated with memory. In other words, good physical fitness appears to help people with Alzheimer’s preserve memory.
Certain activities that stretch your mind, like chess or crossword puzzles, actually help rewire your brain, increasing the number of synapses, or connections, between brain cells. One study found activities such as listening to the radio, reading the newspaper, playing puzzle games and going to museums, could lower the risk of developing Alzheimer’s disease. The study followed 700 participants for four years and found that people who spent the most time on activities involving significant information processing were 47 percent less likely to develop Alzheimer’s than those who spent the least amount of time on these activities.
Eating a healthy diet may also play a role. Specifically, studies suggest that lots of fruits and vegetables high in antioxidants (the darker the better), cold-water fish high in omega-3 fatty acids, and nuts (good sources of vitamin E) can play a protective role. The Memory Improvement with DHA study (MIDAS) found that older adults with normal age-related cognitive decline who took 900 milligrams of the omega-3 fatty acid docosahexaenoic acid (DHA) did better on a computerized memory test than those who took a placebo. Along the same lines, keep levels of high-fat, high-cholesterol foods low to protect the health of your blood vessels.
As with other medical conditions, any unusual symptoms you or a loved one experience should be discussed with a health care professional as soon as possible. Once you or someone you care about is diagnosed with Alzheimer’s, early detection may buy more time in helping you to plan ahead for your loved one’s health and welfare while FDA-approved drugs may help to ameliorate some of the cognitive and behavioral symptoms many people experience.
Facts to Know
- Alzheimer’s disease is a progressive brain disease responsible for the majority of cases of dementia in older people. Hallmark signs of Alzheimer’s include memory loss, confusion, poor judgment, wandering and depression or an indifferent attitude.
- The older someone gets, the more likely he or she is to acquire Alzheimer’s. One in eight people over the age of 65 has Alzheimer’s, and nearly half of people age 85 and older have the disease. A small percentage of people as young as their 30s and 40s get the disease.
- Women may be at greater risk for developing Alzheimer’s; certainly the fact that women live longer than men means that they are more likely to develop Alzheimer’s. More evidence is showing that genes are likely to play a role in determining who develops Alzheimer’s.
- Women are more likely than men to be caregivers for someone with Alzheimer’s disease. Early diagnosis and planning can improve the quality of life for both the person with Alzheimer’s and the caregiver.
- In most cases we don’t know why people develop Alzheimer’s, and so far there is no cure. However, there are many effective strategies to ease the burdens of the disease, and there are some beneficial drug that can be used. Scientists are working hard to better understand the disease and find better treatments.
- Some of the warning signs for Alzheimer’s include the following:• memory loss
• trouble performing everyday tasks
• difficulty with language
• decreased good judgment
• problems with abstract thinking
• misplacing things regularly in inappropriate places
• significant changes in mood or behavior
• personality changes
• loss of drive or initiative
- Health care professionals typically use a step-by-step process to determine if someone has Alzheimer’s. In some instances, some of the early symptoms can be attributed to other problems, such as fatigue, grief, depression, illness, vision or hearing loss or interactions between medications. A mental status evaluation, a comprehensive physical examination, neurological tests, brain imaging and discussions with family members about changes in behavior and mood all are part of the diagnosis of Alzheimer’s disease.
- Despite the fact there is no cure for the disease, health care professionals can help relieve some of the behavioral and cognitive symptoms of Alzheimer’s with strategies for caregivers and a small arsenal of drug treatments.
- Major risk factors for Alzheimer’s are age-related. Other potential risk factors include a severe head injury and genetic factors. There is some evidence that environmental and dietary factors may be involved.
- Alzheimer’s disease is invariably progressive, but there is no set pattern as to how fast the disease will progress in a specific person. Some may have the disease for three to five years at the end of their lives, while others might have Alzheimer’s for a decade or two.
- Local chapters of the Alzheimer’s Association provide information and support groups that can help you develop short- and long-term planning for managing the disease.