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Alzheimer's and Related Dementias
Fact Sheet

Definitions

  • Alzheimer's Disease (AD) is the most common cause of dementia in older people. Dementia is a medical condition that disrupts the way the brain works. AD affects the part of the brain called the cerebral cortex (language and reasoning) which controls thought, memory, and language and is caused by a loss of nerve cells in areas of the brain central to memory. Researchers have found that individuals with Alzheimer's have disruptions in their nerve cells - cells stop functioning and loose connections with other nerve cells.
  • Abnormal structures have neuritic plaques (dense deposits of protein) and neurofibrillary tangles. AD occurs gradually and results in memory loss, behavior changes and a decline in reasoning abilities. Eventually many areas of the brain are involved.

Statistics

  • It is estimated that four million Americans currently suffer from AD or a related form of dementia. Nearly 10 percent of all people over age 65 and up to half of those over age 85 are thought to have AD or another form of dementia.
  • Approximately 19 million Americans have a family member with Alzheimer's. Approximately 360,000 new cases occur each year. However, these numbers are increasing as the population of elderly increases. It is estimated that 14 million Americans will have AD by the middle of this century.
  • A person with AD lives an average of eight years after initial diagnosis and may live as many as 20 years after the onset of symptoms. The length of time people live with AD has profound emotional and financial impact on their families and caregivers.
  • People with AD tend to live with their families until the most advanced stages of the disease. However, many families find that at some point in time, they need to place elderly relatives with advanced Alzheimer's in a nursing home. Today, it is estimated that half of all nursing home patients suffer from AD. The average per patient cost for nursing home care averages $42,000/year, but can exceed $70,000 per year.

The Disease-Defined

  • The greatest risk factor for AD is age, followed by family history of the disease. With few exceptions, researchers believe AD is not caused by a single factor or gene, but by a combination of factors acting together. AD is a chronic disease. There is no cure for the it, but there are effective treatments to manage the symptoms and slow the progression. Many families often discount the symptoms of dementia as a normal process of aging, but dementia is not a natural part of aging. Most older Americans never experience significant memory loss or any form of dementia.
  • Alzheimer's Disease usually begins after age 65, although AD has been diagnosed in individuals under age 65.
  • Most people suffering from dementia have AD. Vascular dementia (multi-infarct dementia) is caused by a series of strokes, but is much less common. Dementia can also be caused by an adverse reaction to a medication or by alcohol use.
  • Research is currently being conducted on possible genetic origins of
    AD. Research indicates that genetic factors may be involved in more than half of the cases of AD. Other possible "causes" include environmental factors and a virus. It is generally accepted that several factors acting independently and individually in each person may cause the onset of AD. There also appears to be a correlation between levels of education and the incidence of AD.
  • The first signs of Alzheimer's often include loss of memory (especially recent events), language difficulties, and difficulty performing routine activities such as driving, and shopping. Mood changes also may be indicative of AD. It is critical that people who demonstrate these symptoms are seen by a physician to a) assess whether the symptoms are caused by a physical ailment or b) the early signs of dementia. Reversible physical conditions that can cause dementia include: high fever, vitamin deficiency, bad reactions to medicine, thyroid problems, minor head injuries, etc.
  • If the diagnosis is Alzheimer's or a related dementia, treatment is available to control the symptoms, delay the onset of the severity of the progression of the disease, improve the quality of life and lengthen the time the individual can stay in their family home.
  • As the disease progresses, behavioral problems are common. Alzheimer's patients can become easily agitated and have difficulty with both long and short-term memory, have problems with judgment and begin to have difficulty with such basic daily activities as dressing, eating, grooming and using the bathroom. Some of the most common problematic behaviors include: agitation, aggression, combativeness, delusions, hallucinations, insomnia, and wandering. Behavioral symptoms may be the result of a treatable problem such as pain, infection, discomfort, and can be treated through both non-pharmacological and pharmacological treatments.

Costs of Disease

  • Alzheimer Disease costs the U.S. at least $100 billion per year. Medicare and private health insurance cover a portion of the health care related expenses, but not the costs associated with care giving or the type of long term care needed by most patients at the most severe part of the Disease. In addition, it is also estimated that AD costs U.S. businesses at least $33 billion per year - either through lost productivity by caregivers or related health and long term care costs.
  • The average lifetime costs per AD patient is $174,000.
  • The Federal government spent approximately $466 million for Alzheimer's research in 2000 - the Federal research appropriation is scheduled to increase to $500 million in 2001.

Treatment and New Research

  • The specialty of geriatric psychiatry is especially trained to treat patients with AD as well as counsel and advise the caregivers of patients with AD. Specialized knowledge and clinical skills are required to address the unique problems of older adults with mental disorders. The geriatric psychiatrist can do the following: perform comprehensive clinical assessments; provide comprehensive treatment and management; and provide consultative services and education regarding mental health problems for older adults. Geriatric psychiatrists also can help family members cope with the psychological toll of care giving.
  • If a person demonstrates any probably symptoms of dementia, a person should visit their physician and ensure that the following tests are completed: a complete medical history, a physical exam, a neurological exam including tests of memory, problem solving, language, and counting, a mental status exam and an assessment of the functional capabilities. Physicians may also take brain scans. The only absolute means of diagnosing AD is recognizing symptoms - then confirming it after death through an autopsy. Taking brain tissue from a living person can be painful and risky, so physicians have developed other means to determine if a patient has AD - with 85 to 90 percent accuracy. They carefully review a patient's symptoms, record a thorough medical history and conduct a complete medical examination.
  • The primary goals of treatment for individuals with AD is to improve the quality of life of the patient and caregiver as well as maximize functional performance by enhancing cognition, mood, and behavior. Treatments include pharmacological and non-pharmacological approaches.
  • Ensuring that someone with AD feels mentally and physically secure is an important and meaningful part of care giving. People with AD need help minimizing confusion and maintain a sense of stability and comfort in their lives. Establishing a daily routine in familiar surroundings is one way to help. It is also important to provide nutrious meals on a regular schedule for optimal health. Keeping patients in touch with family and friends and reminding them of past memories, current events, and important dates are good mental exercises.
  • Several drugs have been developed to alleviate some of the cognitive as well as the behavioral symptoms of AD. Pharmacological treatments for the cognitive symptoms includes: drugs such as tacrine (cognex), donepezil (Aricept) and rivastigmine (Exelon). These agents may also have beneficial effects on behavioral symptoms in some patients and prolonged therapy may delay nursing home placement. Clinical trials of other agents to improve cognitive function are ongoing.
  • Treatment of behavioral and mood changes is also critical as these symptoms can be dangerous to both the patient and the caregiver. Co-morbid conditions associated with AD are common and treatable. They include AD with delirium, AD with depression, and AD with delusions. In addition, many patients developed agitated or aggressive behaviors. All of these conditions can lead to functional disability.
  • Agitation is a general term that refers to a range of behavioral disturbances, including aggression, combativeness, shouting, hyperactivity and disinhibition. As many as 50 percent of all dementia patients exhibit agitation, particularly in the middle and later stages of the Disease. Antipsychotic drugs can produce a modest improvement in some behavioral symptoms in dementia such as risperidone, olanzapine, quetiapine, oxazepam, lorazepam, flupheazine, haloperiodl, thloridzaine, and clozapinel.
  • People with AD should visit their physician on a regular basis. The physician can chart the progression of the Disease and make alternations in treatment as needed. The physician can also offer support as well as specific therapies to the patients and their families.

The Role of the Care Giver

  • Slightly more than half of AD patients receive care at home, while the reminder received care in a variety of different types of institutions.
  • Spouses and family members provide the day-to-day care for people with Alzheimer's. The burden on the caregiver can become overwhelming as the disease becomes more advanced. Caregivers often experience emotional, physical and financial stresses. Caregivers - the majority of whom are women - must juggle childcare jobs, and other responsibilities with caring for their relatives. Caring for someone with AD can be a meaningful experience, but it can also be exhausting, overwhelming, and physically and emotionally draining. Most of the caregiver's time and attention is devoted to the Alzheimer's patient, which leaves little or no time for caregivers to spend on themselves. As a result, caregivers often neglect their own needs for emotional support and respite, or they may recognize these needs but are not sure how or where to get help. For these reasons, the caregiver is often called the second victim of AD.
  • It is common for caregivers to experience fatigue, anxiety, irritability, anger, depression, social withdrawal, or health problems. They must learn to recognize these symptoms and seek medical attention or emotional support to maintain optimal health and well-being.
  • Family members can alleviate stress by planning ahead for the financial, legal, and emotional considerations that arise as the Disease progresses in the Alzheimer's patient.

Resources

American Association for Geriatric Psychiatry
7910n Woodmont Avenue, Suite 1050
Bethesda, MD 20814
(301) 654-7850
www.aagponline.org

AAGP Publications

Diagnosis and Treatment of Alzheimer's Disease and Related Disorders: What the Clinician Needs to Know

Alzheimer's Disease: Understanding the Most Common Dementing Disorder

Behavioral Disorders in Dementia: Agitation, Aggression and Psychosis - Speakers Guide and Slide Kit

Behavioral Disorders in Dementia: What the Clinician Needs to Know

JAMA Consensus Statement

Association Resources

Alzheimer's Association
919 N. Michigan Ave. Suite 1000
Chicago, IL 60611
24-hour Toll-Free Nationwide Hotline: 1-800-272-3900
www.alz.org

National Alliance for Care Giving
4729 Montgomery Lane Suite 642
Bethesda, MD 20814
www.caregiving.org

National Family Caregiver's Association
10400 Connecticut Avenue, #500
Kensington, MD 20895-3944
www.nfcacares.org

National Mental Health Association
1021 Prince Street
Alexandria, VA 22314-2971
www.nmha.org

Governmental Resources

National Institute of Mental Health
http://nimh.nih.gov
http://www.mentalhealth.com/book/p45-alz1.html

National Institute of Aging
Alzheimer's Disease Education and Referral Center
www.alzheimers.org
Phone: 1-800-438-4380
A project sponsored by the National Institute on Aging (one of the National Institutes of Health under the U.S. Department of Health and Human Services), this site provides excellent information about Alzheimer's Disease and related disorders.

Administration on Aging (AoA)
330 Independence Avenue, SW, Washington, DC 20201
www.aoa.dhhs.gov
The Administration on Aging provides an online Alzheimer's Disease fact sheet containing information about the symptoms, diagnosis, treatment, and care of the Disease as well as resources for caregivers.

National Institutes of Neurological Disorders and Strokes
www.ninds.nih.gov
The National Institutes of Neurological Disorders and Strokes provides an online paper that defines Alzheimer's Disease, addresses treatment options, explains the prognosis of the Disease, and describes areas of research.

Food and Drug Administration
www.fda.gov
The FDA is responsible for evaluating and regulating clinical trials on experimental drugs and biological products, and also for ensuring the quality and safety of drugs currently on the market to treat the Disease and its behavioral symptoms. In 1998, the FDA featured an article in the agency's FDA Consumer magazine entitled "Alzheimer's: Few Clues on the Mysteries of Memory".

Agency for Health Care Research and Quality
www.ahcpr.gov/clinic/alzcons.htm
The purpose of the Agency for Health Care Research and Quality (formerly AHCPR) is to enhance the quality, appropriateness, and effectiveness of health care services and to improve access to that care. The AHCPR is the Federal Government's focal point for medical effectiveness and health services research. The AHCPR has released a clinical guideline, Early Alzheimer's Disease, on the recognition and assessment of early Alzheimer's Disease (consumer version and health care provider version).

Surgeon General
Surgeon General's Report on Mental Health: Alzheimer's Disease
www.nimh.nih.gov/mhsgrpt/chapter5/sec4.html