This section highlights some of the groundbreaking research and guidance documents published or presented by Alzheimer's Association professional staff, funded researchers or volunteer science advisors.
Review of Scientific Evidence Addressing Prevalence, Documented Needs, and Interdisciplinary Research: Persons in Early Stage Alzheimer’s Dementia (141 pages)
Prepared for the Alzheimer's Association Early Stage Advisory Group by Sandy Burgener, Linda Buettner and collegues
Comprehensive literature review of the scientific literature non-pharmacological interventions for people in Early Stage Alzheimer's disease and other forms of dementia.
Research Consent for Cognitively Impaired Adults - Recommendations for Institutional Review Boards and Investigators: Consensus Recommendations (5 pages)
Prepared by the Alzheimer's Association
This paper appeared in Alzheimer's Disease and Associated Disorders July-Sept. 2004. The document contains recommendations that Institutional Review Boards and investigators can use to operationalize the informed consent process for individuals with cognitive impairment.
Interventions to Improve Quality of Care: The Kaiser Permanente-Alzheimer’s Association Dementia Care Project (8 pages)
Prepared by Alzheimer’s Association Los Angeles chapter staff and Kaiser colleagues
This paper from the August 2004 American Journal of Managed Care describes an Alzheimer’s Association-Kaiser Permanente joint initiative to improve the quality of dementia care in the Kaiser Permanente Los Angeles area managed care network. The project developed dementia diagnosis and management guidelines for Kaiser physicians, proactively encouraged guideline use, and provided care management support through social workers. Individuals with dementia, their caregivers and Kaiser health care professionals all expressed higher rates of satisfaction with care quality provided by the project.
Dementia and Serious Coexisting Medical Conditions: A Double Whammy (19 pages)
Prepared by Katie Maslow, M.S.W., Alzheimer’s Association associate director, quality care
This paper from Nursing Clinics of North America 2004, vol. 39, discusses the widespread occurrence of other serious medical conditions in individuals with dementia; explores how coexisting conditions may worsen cognitive symptoms and create treatment challenges for care professionals and family caregivers; and analyzes the impact of coexisting conditions on use and cost of health care.
Alzheimer's Disease, the Alzheimer’s Association and Stem Cell Research (1 page)
Prepared by the Alzheimer’s Association
This document was prepared on June 14, 2005 to provide background information and address common questions about stem cell research and Alzheimer’s disease.
Guidelines for the Development of Community-Based Screening Programs for Cognitive Impairment in Older People (12 pages, guidelines begin on page 6)
Prepared by the Alzheimer’s Association Work Group on Screening for Cognitive Impairment and Alzheimer’s Disease
This paper in the June 21, 2001, issue of Alzheimer Insights, a peer-reviewed online journal, presents the recommendations of independent experts and Alzheimer’s Association senior science and public policy staff on issues and challenges related to community screening for dementia. The guidelines outline 21 questions that must be considered in the design of a community screening program. If many of these questions pose problems, the sponsoring group may wish to consider launching a community education initiative in place of a screening program.
The Use of MRI and PET for Clinical Diagnosis of Dementia and Investigation of Cognitive Impairment: A Consensus Report (15 pages)
Prepared by the Neuroimaging Work Group of the Alzheimer's Association
Posted June 1, 2004
This report represents the consensus of 22 independent experts assembled by the Alzheimer's Association on the current value and appropriate use of magnetic resonance imaging (MRI) and positron emission tomography (PET) in diagnosing Alzheimer's disease and related disorders, tracking disease progression, and monitoring response to experimental treatments. The report also recommends directions for future research.
End-of-Life Care for People with Dementia in Residential Care Settings (35 pages)
Prepared for the Alzheimer’s Association by Ladislav Volicer, M.D., Ph.D., School of Aging Studies, University of South Florida, Tampa
The Alzheimer’s Association commissioned this literature review on end-of-life care for nursing home residents with advanced dementia as part of its Campaign for Quality Residential Care. The goal is to document the current state of end-of-life care, provide an evidence base for practice and policy recommendations to improve care, and stimulate further research in this area.
University of North Carolina Institute on Aging's Online Bibliography on Alzheimer's Disease and Dementia in Diverse Populations
Comprehensive online bibliography of the social and behavioral research related to Alzheimer's disease and other forms of dementia.
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Alzheimer s disease is a slowly progressive, degenerative disorder of the brain that eventually results in abnormal brain function and death. The disease was first described in 1907 by a German physician, Dr. Alois Alzheimer(1864-1915). In the neurological autopsy on the brain of a 56-year-old woman Auguste D., of Frankfurt, who died after several years of progressive mental deterioration marked by increasing confusion and memory loss. Taking advantage of a then-new staining technique, he noticed an odd disorganization of the nerve cells in her cerebral cortex, the part of the brain responsible for reasoning and memory. The cells were bunched up like a rope tied in knots. He termed the strange nerve bundles neurofibrillary tangles. He also noted an unexpected accumulation of cellular debris around the affected nerves, which he termed senile plaques. In a medical journal article published in 1905, Alzheimer speculated that the nerve tangles and plaques were responsible for the women s dementia.
Alzheimer s disease is a disorder marked by a gradual decline in brain function that gets worse with time. It used to be assumed that this change was a normal part of aging that we called senility. Some people develop this condition when they are as young as 40 years of age. However, the disease is most common in persons over the age of 65. It is estimated that approximately 10 percent of persons over 65 years of age may have Alzheimer s disease and that in persons over the age of 85, up to 50 percent may be affected. Alzheimer s disease is not a normal part of the aging process. It is not contagious, and it is not known how it can be prevented. While the physical changes in the brain are very similar among different people the behavioral and psychological symptoms that result are complex and may differ from person to person(Kawas, 80). These symptoms lead to a form of dementia which is the loss of mental skills and abilities, including self-care capabilities. As Alzheimer s disease progresses, these losses will result in total dependency for even the simplest activities(Erickson, 149).
Alzheimer s disease usually comprises of three stages. The first being the onset stage. The symptoms of the onset stage often appear very gradually. There may be some minimum memory loss, particularly of recent events. The individual may experience difficulty in finding the right words to use during casual conversations. Work performance may begin to deteriorate and changes in behavior may start to become obvious. These changes may last for a period of up to five years(Campbell).
The second stage, the progressive stage contain the same symptoms noted in the onset stage but are now more obvious. There may be distinct problems with language abilities(aphasia), which is typically the most obvious sign of movement towards this stage. Persons affected may have difficulty naming objects(agnosia), or with maintaining a logical conversation. They may also have difficulty understanding directions or instructions. They often become easily disoriented with regards to what day it is, where they are, and who they are with. Confusion and the resulting frustration are often evident. Memory losses become even more pronounced. They may also begin to experience loss of self-care skills(apraxia), including the ability to use the toilet. Severe changes in personality may begin to become obvious, and their social behavior may be marked by suspiciousness(paranoia) and delusions. These changes may last for up to about twelve years(Campbell).
In the third stage, the terminal stage persons affected now experience substantial dysfunction. Basic skills such as eating or drinking are forgotten. Because of eating problems, many persons may experience a substantial loss of body weight, up to 20-30 percent(Lewis, 49). They may eventually lose their ability to maintain balance and walk. Their ability to recognize other persons and their environment is gone. Both long- and short-term memories are lost. At this stage, persons affected require complete 24-hour care and often become bedridden and inactive(Lewis, 49). Because of this, they are at increased risk for ant infection, especially pneumonia, and consequently are far more likely to die. These changes, leading to death, may last for three of more years(Campbell).
The genetic mechanisms of familial Alzheimer s remain largely unexplained, but a few genetic mutations have been identified that greatly increase risk in some families. Research has focused on specific abnormalities of genes on chromosomes 1, 14, and 21. The mutation involving chromosome 21 causes Down syndrome. Instead of having a pair of this chromosome, people with Down syndrome are born with three. Down causes a characteristic physical appearance, and a particular form of mental retardation(Flieger, 18). Until fairly recently, people with this condition usually died in their 30s, but today, many live longer. If people with Down syndrome live into their 40 s or 50 s, they almost always develop Alzheimer s disease. On autopsy, the brains of Down and Alzheimer s sufferers are often indistinguishable. Chromosome 21 contains the gene for amyloid precursor protein, or APP, which appears to play a role in the deposition of beta-amyloid, the substance involved in the senile plaques of Alzheimer s disease. People with Down syndrome appear to produce extra APP, which in turn leads to unusually high levels of beta-amyloid peptide. The mutations on chromosomes 1 and 14 cause rare clusters of Alzheimer s disease in small numbers of families(Flieger, 17). The defects on chromosome 14 occur in a gene called presenilin 1. It appears to play a major role in early-onset hereditary Alzheimer s disease, accounting for up to 80 percent of cases of this type of Alzheimer s.
Treatments for Alzheimer s disease have been in wide demand in the last 50 years. The latest in finding a cure has led to the treatment of leprosy and arthritis. The treatment of both leprosy and arthritis involves large doses of medications known as non-steroidal anti-inflammatory drugs(NSAIDS). These drugs include such common, over-the-counter medications as aspirin, ibuprofen(Motrin, Advil), and naproxen(Naprosyn), but not acetaminophen(Tylenol). With women being at a greater risk for contacting Alzheimer s disease, the use of estrogen after menopause has lowered the risk. Estrogen boosts the production of acetylcholine, a key chemical neurotransmitter involved in the transmission of nerve impulses across the tiny gaps between nerve cells(synapses). In addition, estrogen improves blood flow through the brain and enhances verbal abilities of postmenopausal women who take hormone replacement therapy.
The research of Alzheimer s and a cure for the disease has been increasingly important. Organization like the Ronald & Nancy Reagan Research Institute have lent grants to help aid in finding a cure(H.R.S.A. awards). Since 1995 when former president Reagan announced that he had Alzheimer s disease, Alzheimer s has been a major headline in the news since. There are thousands of organization and webpages on he internet that are helping the public be aware of this disease that takes the lives of million of people every year, and with the aging of baby-boomers, the disease is sure to emerge more in the next couple of years(Time Bomb?).
Alzheimer s disease has touched many people since it s discovery by Alois Alzheimer. It s effects on the brain cause its victims to lose some if not most of their memory. This causes the patient to forget things such as who they are, who their relatives are, where they are, how to get home, or even when or how to eat. These problem sometimes makes caring for the patient hard because the care person has to do almost everything for the person effected. This puts a feeling of guilt upon the family because they feel that they should care for their own family members. The places where the patients do go provide all the needs that a person with Alzheimer s disease could need. This includes: feeding, clothing, exercise, giving medication, take care of personal hygiene and what not. Taking care of Alzheimer s patients is one of the hardest job because when your taking care of them, your taking care of baby, that is experiencing everyday things for the first time again.
This was an important topic for me to learn more about because my family believed that my grandfather had Alzheimer s disease before he passed away. I was never aware that anything was wrong with him because I had always known him as he was, my grandfather. I picked the topic of Alzheimer s disease because I personally wanted to learn more about it and if I would have to worry about having it in the future. Before this project, I knew only what I had heard on the news about it, but now I know so much more, and yet don t know all there is to know. A lot is unknown about the brain disease that effects so many, but am more conscious about it. As more is revealed about Alzheimer s disease, more will be known about how it is contracted and how to know if you have. Until that is known, Alzheimer s disease will remain one of the most researched and looked at diseases in the world today.