Alzheimer's as a Disability

"Alzheimer's disease is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities. As Alzheimer's progresses, individuals may also experience changes in personality and behavior, such as anxiety, suspiciousness or agitation, as well as delusions or hallucinations."[1] A disease that affects more than four and a half million Americans[2], Alzheimer's is increasingly becoming one of the most prevalent disabilities in the United States, especially in the elderly. It "is the most common form of dementia, a group of conditions that all gradually destroy brain cells and lead to progressive decline in mental function."[3] More specifically, Alzheimer's progresses by causing "nerve clusters in the brain... to become calcified and tangled"[4], which, in turn, causes the death of brain cells. Alzheimer's can severely limit important life activities such as recalling ideas, events, facts, etc. from both the short and long term memories, dressing, cleaning, or feeding oneself, carrying on a logical conversation, driving, making decisions, and other activities that involve cognitive activity. This limit of major life activity classifies Alzheimer's disease as a disability.

Before the twentieth century, nothing was known about Alzheimer's that set it apart from any other form of dementia, or "senility" as it was then known, and it was often passed off as simple aging, rather than a medical condition or a disability. In 1906, however, Alois Alzheimer, a German psychiatrist, published the first proof that there were different forms of dementia and that they were, for the most part, based in the physical brain and not just the forgetfulness that often accompanies old age. The case he observed was that of a fifty-one year old woman who "had almost no memory" and "was sometimes angry and disoriented.[5] After the woman's death, Alzheimer examined her brain and spinal cord and discovered the presence of "plaques and tangles [which are] now seen as the proof of Alzheimer's disease."[6]

Over the past twenty to thirty years, people with Alzheimer's have made great advances in gaining respect from the public. Like many members of the disability community, people with Alzheimer's and their families often prefer certain terminology to describe their disabilities. "Until the 1970's and even the 1980's"[7], Alzheimer's was often referred to by its archaic name, senile dementia, or even simply "senility".[8] Since then, it has become increasingly more popular to hear the more dignified terms, "Alzheimer's" or "Alzheimer's disease" used.

Community views of Alzheimer's do, though, still have a long way to come. Although there is a large sum of money donated each year to Alzheimer's causes, it is still largely encompassed by the medical model and is often treated not as a disability, but as a "massive public health issue... and a health problem to be solved."[9] It has been recommended by many Alzheimer's experts that the money that is currently being spent on finding a cure would better be spent on improvements in care for those with Alzheimer's and, since Alzheimer's has shown signs of being a preventable disability, the research, publication, and promotion of means through which future cases of Alzheimer's might be decreased.

According to statistics, "the number of Americans with Alzheimer's has more than doubled since 1980... [10] Because the average population is aging and the risks of developing Alzheimer's are compounded through age, it is important to focus a good deal of research on prevention. "A major focus of research today is to find genes that contribute to a person's risk of developing Alzheimer disease. Genes that cause rare, inherited forms of AD were discovered about 15 years ago."[11] Being aware of the presence of genetic susceptibility to various forms of Alzheimer's is one step of many that people may take to avoid Alzheimer's. Current research has also indicated that simple, day to day lifestyle choices may help to prevent, or at least offset, the development of Alzheimer's. "These measures include controlling blood pressure, weight and cholesterol level; exercising both body and mind; and staying socially active."[12] Studies have shown that being in good physical health as one ages helps to slow the affects of Alzheimer's. It has also been concluded that the mind should be stimulated even in older age through games, puzzles, social interaction, literature, education, etc. as an approach to stop Alzheimer's. A recent report also concludes "that those who drank between one and six alcoholic drinks throughout the week were half as likely to have dementia than those who abstained."[13] Through investigation of the factors that cause Alzheimer's, researchers and doctors can promote strategies that will help people age healthfully and without Alzheimer's. According to the Alzheimer's Association, "a strategy to delay the onset of Alzheimer's by five years could halve the number of affected individuals over the next fifty years."[14]

The most important thing that can be done, however, is improving the care that people with Alzheimer's receive. "More than seventy percent of people with Alzheimer's live at home, where family and friends provide most of their care."[15] Many people with Alzheimer's that might not have any living relatives or close friends have personal assistants that help them out anywhere from a few hours each week to twenty-four hours a day. Such a lifestyle benefits the person in multiple ways. First, it encourages independent living, which would be a very small, if present at all, part of life for somebody living in an institution or a nursing home. This ability to live independently, or interdependently, helps to preserve a person's dignity as Alzheimer's progresses. The interaction with not only the primary caregivers, but the world that the person with Alzheimer's is familiar with also serves as social and mental stimulation that may help slow the progression of and even lessen the severity of the disability. Oftentimes, family members, particularly children or grandchildren, of the person with Alzheimer's will become their guardian and help their loved one live as independently as possible throughout the rest of their life. "One important part of treatment is supportive care that helps individuals and their families come to terms with the diagnosis; obtain information and advice about treatment options; and maximize quality of life through the course of the illness."[16]

Although the idea should not be taken to the extreme of the medical model, it is definitely important to remember that Alzheimer's is classified as a disease and does require regular medical attention. Once a person is diagnosed with Alzheimer's, death is imminent and unavoidable. "People with Alzheimer's die an average of eight years after first experiencing symptoms, but the duration of the disease can vary from three to twenty years."[17] Currently, there is no medication or treatment that halts the "underlying degeneration of brain cells", but there are various approved medications that "may temporarily delay memory decline for some individuals" as well as "help with the emotional and behavioral symptoms of Alzheimer's."[18] Additionally, there is a great deal of uncertainty in diagnosing Alzheimer's, making regular visits to a physician extremely important. Many times, there is "difficulty distinguishing Alzheimer's disease from a related disorder"[19] and although "a skilled physician can diagnose Alzheimer's disease with ninety percent accuracy"[20], frequent encounters with a doctor can help eliminate diagnostic error and ensure that the person is being treated for the proper type of dementia.

Because Alzheimer's is ultimately fatal, counseling for both the person who is diagnosed and that person's friends and family may be advantageous and valuable. In some cases, a person might feel that euthanasia is the best course of action to preserve their dignity and quality of life after being diagnosed with Alzheimer's, but many, if not most, disability groups, especially Not Dead Yet, disagree with this notion that death would favorable to living with Alzheimer's. Instead, it is better for the person with Alzheimer's, usually along with those closest to them, to receive emotional therapy from somebody who is familiar with Alzheimer's and its course to help come to terms with and accept their impending death.

As Alzheimer's becomes more and more commonplace, it is imperative for the community to reach out and treat those with Alzheimer's, as well as all people with disabilities, as valuable and indispensable members of the community. While there will be research on and improvements in our knowledge about Alzheimer's, and perhaps eventually a treatment to eradicate the disease, the focus should be on helping those with the disability be as independent as possible and preventing new cases rather than finding a cure for something that is commonly deemed as "in need of a cure."

[1] Alzheimer's Association - http://www.alz.org/

[2] Hebert, LE; Scherr, PA; Bienias, JL; Bennett, DA; Evans, DA. "Alzheimer Disease in the U.S. Population: Prevalence Estimates Using the 2000 Census." Archives of Neurology August 2003; 60 (8): pgs. 1119 - 1122.

[3] Alzheimer's Association - http://www.alz.org/

[4] Lokvig, Jytte and Becker, John. D. Alzheimer's A to Z. New Harbinger Publications. Oakland, CA: 2004. pg. 13

[5] Shapiro, Joseph. "Emphasis on Alzheimer Cure Debated." NPR: November 6, 2006. http://www.npr.org/templates/story/story.php?storyId=6430300

[6] Ibid.

[7] Ibid.

[8] Ibid.

[9] Ibid.

[10] "Alzheimer Disease in the U.S. Population: Prevalence Estimates Using the 2000 Census."

[11] Alzheimer Research Forum - http://www.alzforum.org/

[12] "Fact Sheet". Alzheimer's Association; 2006. pg.1

[13] New Mobility. http://newmobility.com/review_article.cfm?id=732&action=browse

[14] "Fact Sheet." pg. 2

[15] Ibid.

[16] Ibid.

[17] Ibid. pg. 1

[18] Ibid. pg. 2

[19] Ibid.

[20] Ibid. pg. 1