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basics of alzheimer's disease - Alzheimer's Association PDF

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BASICS OF ALZHEIMER’S DISEASE WHAT IT IS AND WHAT YOU CAN DO Geri T., living with Alzheimer's, and her husband and care partner, Jim T. WHAT IS ALZHEIMER’S DISEASE? Alzheimer’s (AHLZ-high-merz) is a disease of the brain that causes problems with memory, thinking and behavior. It is not a normal part of aging. Alzheimer’s gets worse over time. Although symptoms can vary widely, the first problem many people notice is forgetfulness that’s severe enough to affect their ability to function at home or at work, or to enjoy hobbies. The disease may cause a person to become confused, get lost in familiar places, misplace things or have trouble with language. It can be easy to explain away unusual behavior as part of normal aging, especially for someone who seems physically healthy. However, any concerns about memory loss should be discussed with a doctor. CONTENTS 1. Alzheimer’s and other dementias .......... p.2 2. How Alzheimer’s affects the brain ....... p.4 3. Causes and risk factors .............................. p.7 4. How to find out if it’s Alzheimer’s disease ....................................... p.9 5. When the diagnosis is Alzheimer’s ....... p.13 6. Stages of the disease. .................................. p.15 7. Treating the symptoms............................... p.18 8. Hope for the future ..................................... p.23 1 1. ALZHEIMER’S AND mental functions, including memory and the ability to pay attention, make sound OTHER DEMENTIAS judgments and plan the steps needed to complete a task. Alzheimer’s More than 5 million Americans have Alzheimer’s, » Dementia with Lewy bodies is a type of the most common form of dementia. Alzheimer’s progressive dementia that leads to a decline in accounts for 60 to 80 percent of all dementia thinking, reasoning and independent function cases. That includes 10 percent of those age 65 due to abnormal microscopic deposits that and older and one-third of those 85 and older. damage brain cells. Alzheimer’s also impacts the more than 15 million » Huntington’s disease dementia is a Americans who provide these individuals with progressive brain disorder caused by a unpaid care. defective gene. It causes changes in the central area of the brain, which affect Dementia movement, mood and thinking skills. Dementia is a general term for the loss of » Creutzfeldt-Jakob disease is the most memory and other cognitive abilities serious common human form of a group of rare, enough to interfere with daily life. fatal brain disorders known as prion diseases. Misfolded prion protein destroys brain Other types of dementia cells, resulting in damage that leads to rapid » Vascular dementia is a decline in thinking decline in thinking and reasoning as well as skills caused by conditions that block or involuntary muscle movements, confusion, reduce blood flow to the brain, depriving difficulty walking and mood changes. brain cells of vital oxygen and nutrients. These changes sometimes occur suddenly » Frontotemporal dementia (FTD) is a group following strokes that block major brain of disorders caused by progressive cell blood vessels. It is widely considered the degeneration in the brain’s frontal lobes (the second most common cause of dementia areas behind the forehead) or its temporal after Alzheimer’s disease. lobes (the regions behind the ears). » Mixed dementia is a condition in which » Normal pressure hydrocephalus is a brain abnormalities characteristic of more than disorder in which excess cerebrospinal fluid one type of dementia occur simultaneously. accumulates in the brain’s ventricles, causing Symptoms may vary, depending on the thinking and reasoning problems, difficulty types of brain changes involved and the walking and loss of bladder control. brain regions affected, and may be similar » Down syndrome dementia develops in to or even indistinguishable from those of people born with extra genetic material Alzheimer’s or another dementia. from chromosome 21, one of the 23 human » Parkinson’s disease dementia is an chromosomes. As individuals with Down impairment in thinking and reasoning that syndrome age, they have a greatly increased many people with Parkinson’s disease risk of developing this type of dementia eventually develop. As brain changes that’s either the same as or very similar to gradually spread, they often begin to affect Alzheimer’s disease. 2 3 » Korsakoff syndrome is a chronic memory disorder caused by severe deficiency of TAKE A CLOSER LOOK thiamine (vitamin B-1). It is most commonly caused by alcohol misuse, but certain other conditions can also cause the syndrome. » Posterior cortical atrophy (PCA) is the gradual and progressive degeneration of the outer layer of the brain (the cortex) located in the back of the head (posterior). It is not known whether PCA is a unique disease or a possible variant form of Alzheimer’s disease. 2. HOW ALZHEIMER’S AFFECTS THE BRAIN The changes that take place in the brain begin at the microscopic level long before the first signs Explore our Inside the Brain: An Interactive of memory loss. This period is referred to as Tour at alz.org/brain to learn how Alzheimer’s preclinical Alzheimer’s. affects the brain and its functions. What goes wrong in the brain like a real factory, backups and breakdowns in one The brain has 100 billion nerve cells (neurons). system cause problems in other areas. As damage Each nerve cell connects to many others to form spreads, cells lose their ability to do their jobs and, communication networks. In addition to nerve eventually, die. cells, the brain has specialized cells that support and nourish other cells. The role of plaques and tangles Groups of nerve cells have special jobs. Some The brains of individuals with Alzheimer’s have an are involved in thinking, learning and memory. abundance of plaques and tangles. Plaques are Others help us see, hear, smell and tell our deposits of a protein fragment called beta-amyloid muscles when to move. that build up in the spaces between nerve cells. Tangles are twisted fibers of another protein Brain cells operate like tiny factories. They called tau that build up inside cells. receive supplies, generate energy, construct equipment and get rid of waste. Cells also process Though autopsy studies show that most people and store information and communicate with develop some plaques and tangles as they age, other cells. Keeping everything running requires those with Alzheimer’s tend to develop far more coordination as well as large amounts of fuel and develop them in a predictable pattern, and oxygen. beginning in the areas important for memory before spreading to other regions. Scientists believe Alzheimer’s disease prevents parts of a cell’s factory from running well. They Scientists do not know exactly what role plaques are not sure where the trouble starts. But just and tangles play in Alzheimer’s disease. Most 4 5 experts believe that they disable or block 3. CAUSES AND communication among nerve cells and disrupt RISK FACTORS processes the cells need to survive. While scientists know that Alzheimer’s disease The destruction and death of nerve cells causes involves the failure of nerve cells, it’s still memory failure, personality changes, problems in unknown why this happens. However, they have carrying out daily activities and other symptoms identified certain risk factors that increase the of Alzheimer’s disease. likelihood of developing Alzheimer’s. How Alzheimer’s spreads in the brain Age The greatest known risk factor for Alzheimer’s is increasing age. Most individuals with the disease are 65 and older. One in 10 people in this age group and nearly one-third of people age 85 and older have Alzheimer’s. Plaques and tangles begin Family history in brain areas involved in Another risk factor is family history. Research memory. has shown that those who have a parent, brother or sister with Alzheimer’s are more likely to develop it than individuals who do not. The risk increases if more than one family member has the disease. Genetics Two categories of genes influence whether a person develops a disease: risk genes and They gradually spread to deterministic genes. Risk genes increase the other areas. likelihood of developing a disease but do not guarantee it will happen. Deterministic genes cause a disease, meaning anyone who inherits one will develop a disorder. Researchers have found several genes that increase the risk of Alzheimer’s. APOE-e4 is the first risk gene identified and remains the one with the strongest impact. Other common forms of the APOE gene are APOE-e2 and APOE-e3. Eventually much of the brain is affected Everyone inherits a copy of some form of APOE from each parent. Those who inherit one copy of Illustrations: APOE-e4 have an increased risk of developing Alzheimer’s Disease Education and Referral Center, a service of Alzheimer’s; those who inherit two copies have the National Institute on Aging an even higher risk, but not a certainty. 6 7 Rare deterministic genes cause Alzheimer’s in a Some of the strongest evidence links brain few hundred extended families worldwide. These health to heart health. The risk of developing genes are estimated to account for less than Alzheimer’s or vascular dementia appears to be 1 percent of cases. Individuals with these genes increased by many conditions that damage the usually develop symptoms in their 40s or 50s. heart and blood vessels. These include heart disease, diabetes, stroke, high blood pressure and high cholesterol. Work with your doctor to monitor your heart health and treat any LATINOS AND problems that arise. AFRICAN-AMERICANS Studies of donated brain tissue provide additional Research shows that older Latinos are evidence for the heart-head connection. These about one-and-a-half times as likely as studies suggest that plaques and tangles are older whites to have Alzheimer’s and more likely to cause Alzheimer’s symptoms if other dementias, while older African- strokes or damage to the brain’s blood vessels Americans are about twice as likely to are also present. have the disease as older whites. The reason for these differences is not well 4. HOW TO FIND OUT IF IT’S understood, but researchers believe that ALZHEIMER’S DISEASE higher rates of vascular disease in these Not everyone experiencing memory loss or groups may also put them at greater risk other Alzheimer’s warning signs recognizes that for developing Alzheimer’s. they have a problem. Signs of dementia are sometimes more obvious to family members or friends. Other risk factors The first step in following up on symptoms is Age, family history and genetics are all risk finding a doctor with whom the person feels factors we can’t change. However, research is comfortable. There is no single type of doctor beginning to reveal clues about other risk factors that specializes in diagnosing and treating that we may be able to influence. There appears memory symptoms or Alzheimer’s. Many people to be a strong link between serious head injury contact their regular primary care physician and future risk of Alzheimer’s. It’s important to about their concerns. Primary care doctors often protect your head by buckling your seat belt, oversee the diagnostic process themselves. wearing a helmet when participating in sports In some cases, the doctor may refer the and proofing your home to avoid falls. individual to a specialist, such as a: One promising line of research suggests that » Neurologist, who specializes in diseases of strategies for overall healthy aging may help the brain and nervous system. keep the brain healthy and may even reduce the risk of developing Alzheimer’s. These measures » Psychiatrist, who specializes in disorders include eating a healthy diet, staying socially that affect mood or the way the mind works. active, avoiding tobacco and excess alcohol, and » Psychologist with special training in testing exercising both the body and mind. memory and other mental functions. 8 9 There is no single test that proves a person has Reviewing medical history Alzheimer’s. The workup is designed to evaluate The doctor will interview the person being overall health and identify any conditions that tested and others close to him or her to gather could affect how the mind is working. When information about current and past mental and other conditions are ruled out, the doctor physical illnesses. It is helpful to bring a list of all can determine if it is Alzheimer’s or another the medications the person is taking. dementia. The doctor will also obtain a history of key Experts estimate that a skilled physician is able medical conditions affecting other family to diagnose Alzheimer’s with more than members, especially whether they may have or 90 percent accuracy. Physicians can almost had Alzheimer’s or other dementias. always determine that a person has dementia, but it may sometimes be difficult to determine Evaluating mood and mental status the exact cause. Mental status testing evaluates memory, the ability to solve simple problems and other STEPS TO DIAGNOSIS INCLUDE: thinking skills. Understanding the problem This testing gives an overall sense of whether Be prepared for the doctor to ask: a person: » What kind of symptoms have occurred. » Is aware of symptoms. » When they began. » Knows the date, time and where he or she is. » How often they happen. » Can remember a short list of words, follow instructions and do simple calculations. » If they have gotten worse. The doctor may ask the person his or her address, what year it is or who is serving as president. The individual may also be asked to spell a word backward, draw a clock or copy a design. Mood and sense of well-being will also be assesed to detect depression or other illnesses that can cause memory loss and confusion. Physical exam and diagnostic tests A physician will: » Evaluate diet and nutrition. » Check blood pressure, temperature and pulse. » Listen to the heart and lungs. » Perform other procedures to assess overall health. 10 11 The physician will collect blood and urine 5. WHEN THE DIAGNOSIS samples and may order other laboratory IS ALZHEIMER’S tests. Information from these tests can help Once testing is complete, the doctor will make identify disorders such as anemia, infection, an appointment to review results and share his diabetes, kidney or liver disease, certain vitamin or her conclusions. A diagnosis of Alzheimer’s deficiencies, thyroid abnormalities, and problems reflects a doctor’s best judgment about the with the heart, blood vessels or lungs. All of cause of a person’s symptoms, based on the these conditions may cause confused thinking, testing performed. trouble focusing attention, memory problems or other symptoms similar to dementia. You may want to ask the doctor: » Why the diagnosis is Alzheimer’s. Neurological exam A doctor will closely evaluate the person for » Where the person may be in the course of problems that may signal brain disorders other the disease. than Alzheimer’s. » What to expect in the future. The physician will also test: Find out if the doctor will manage care going » Reflexes. forward and, if not, who will be the primary doctor. The doctor can then schedule the next » Coordination. appointment or provide a referral. » Muscle tone and strength. Alzheimer’s disease is life-changing for both » Eye movement. the diagnosed individual and those close to him or her. While there is currently no cure and no » Speech. way to stop the underlying death of brain cells, » Sensation. treatments are available that may help relieve The doctor is looking for signs of small or large some symptoms. strokes, Parkinson’s disease, brain tumors, fluid Research has shown that taking full advantage of accumulation on the brain and other illnesses available treatment, care and support options can that may impair memory or thinking. improve quality of life. The neurological exam may also include a brain Consider: imaging study. The most common types are » How to provide increasing levels of care as magnetic resonance imaging (MRI) or computed the disease progresses. tomography (CT). MRIs and CTs can reveal tumors, evidence of small or large strokes, » How the individual and family members will damage from severe head trauma or a buildup cope with changes in the person’s ability of fluid. Researchers are studying other imaging to drive, cook and perform other daily techniques so they can better diagnose and track activities. the progress of Alzheimer’s. » How to ensure a safe environment. 12 13 It is also important to begin making legal and 6. STAGES OF financial plans. A timely diagnosis often allows THE DISEASE the person with dementia to participate in this Alzheimer’s typically progresses slowly in planning. The person can also decide who will three general stages: early, middle and late make medical and financial decisions on his or (sometimes referred to as mild, moderate her behalf as the disease progresses. and severe). Medicare coverage of care planning The symptoms of Alzheimer’s worsen over People with cognitive impairment, including time, but because the disease affects people in Alzheimer’s and other dementias, now different ways, the rate of progression varies. have access to care planning with a medical On average, a person with Alzheimer’s lives four professional through Medicare. This detailed care to eight years after diagnosis, but can live as long planning includes: as 20 years, depending on other factors. » Measuring neuropsychiatric symptoms. The following stages provide an overall idea of how abilities change and should be used as » Medication reconciliation. a general guide. Stages may overlap, making it » Evaluating safety (including driving ability). difficult to place a person with Alzheimer’s in a » Identifying caregivers and caregiver needs. specific stage. » Identifying and assessing care directives. Early-stage Alzheimer’s » Planning for palliative care needs. In the early stage, a person may function independently. He or she may still drive, work and » Referrals to community services. be social. However, the person may experience Check with your health care provider for more memory lapses, such as forgetting familiar words information. or the location of everyday objects. Those close to the individual begin to notice difficulties. During a detailed medical interview, CREATE AN ACTION PLAN doctors may be able to detect problems in memory Alzheimer’s Navigator® helps guide or concentration. Common difficulties include: individuals facing dementia when » Problems coming up with the right word planning for the future. This interactive or name. tool evaluates needs, outlines action » Trouble remembering names when steps and links the user to local introduced to new people. services and Association programs. » Challenges performing tasks in social or Visit alz.org/alzheimersnavigator to work settings. start planning. » Forgetting material that was just read. » Losing or misplacing a valuable object. » Increasing trouble with planning or organizing. 14 15 Middle-stage Alzheimer’s Middle-stage Alzheimer’s is typically the longest WANDERING stage and can last for many years. As the disease Six out of 10 people with Alzheimer’s progresses, the person with Alzheimer’s will will wander and become lost. People can require a greater level of care. wander or become confused about their You may notice the person with Alzheimer’s location at any stage of the disease. If not confusing words, getting frustrated or angry, or found within 24 hours, up to half of those acting in unexpected ways, such as refusing to who get lost risk serious injury or death. bathe. Damage to nerve cells in the brain can make it difficult to express thoughts and perform Visit alz.org/safety to learn about routine tasks. MedicAlert® + Alzheimer’s Association At this point, symptoms will be noticeable to Safe Return®, a 24-hour emergency others and may include: response service that provides assistance when a person with dementia becomes » Forgetfulness of events or about one’s own lost or has a medical emergency. personal history. » Feeling moody or withdrawn, especially in socially or mentally challenging situations. Late-stage Alzheimer’s » Being unable to recall their address or In the final stage of the disease, individuals lose telephone number, or the high school or the ability to respond to their environment, college from which they graduated. carry on a conversation and, eventually, control » Confusion about where they are or what movement. They may still say words or phrases, day it is. but communicating pain becomes difficult. As memory and cognitive skills worsen, significant » The need for help choosing proper clothing personality changes may occur and extensive for the season or the occasion. help with daily activities may be required. » Trouble controlling bladder and bowels. At this stage, individuals may: » Changes in sleep patterns, such as sleeping » Need around-the-clock assistance with during the day and restlessness at night. daily activities and personal care. » An increased risk of wandering and » Lose awareness of recent experiences as becoming lost. well as of their surroundings. » Personality and behavioral changes, » Experience changes in physical abilities, including suspiciousness and delusions or including the ability to walk, sit and, compulsive, repetitive behavior like hand eventually, swallow. wringing or tissue shredding. » Have greater difficulty communicating. » Become increasingly vulnerable to infections, especially pneumonia. 16 17

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