Alzheimer's: Writing on the Edge of Forgetfulness

Alzheimer’s: a word that can strike fear in the hearts of both the young and old alike. It is a degenerative disease, which means it not only affects the victim, but also the people around them. Sometimes referred to as Alzheimer’s senile dementia, this condition is characterized by progressive, exponential neuronal death along with the atrophy of certain areas of the brain. As a result, the person begins to suffer memory loss. It affects first the short-term memory, then, as the disease progresses, it damages a person’s long-term memory to the point where he or she may permanently forget his or her loved ones.

It is the most common type of dementia, with 5 to 8 out of every 12 cases of dementia falling into this category. There is a running misconception, though, that Alzheimer’s, or senility in general, is a normal part of human development, which implies that, as one grows old, they will eventually develop this disease. However, according to the experts on the Alzheimer’s Association’s website, the disease is not a normal part of aging, although the confusion is understandable since old age plays a pivotal role in the onset of the disease. Alzheimer’s is more common in individuals over 65 years of age, and the life expectancy of those who suffer from it is usually four to six years after the symptoms become noticeable. But with proper care and medication, a person can live upwards of 20 years with Alzheimer’s.

It is important to note that, while this disease does not directly kill its victims, the complications that stem from extended periods of lying down or sitting, which are common in the advanced stages due to decreased muscle mass, coupled with incontinence and decaying hygienic conditions, can all bring about potentially fatal secondary infections that slowly deteriorate the patient’s health. Alzheimer’s is, by definition, a terminal condition; the person will never recover from it. However, through the use of medication, its symptoms can be slowed and the inevitable descent into “permanent forgetfulness” can be stalled. 

Loss of identity, frustration, helplessness, and hopelessness are awful aspects of Alzheimer’s. Experts and professionals have tried to depict accurately the loss of “self” that inevitably occurs in the progression of the disease. Even though many have tried to describe the symptoms at advanced stage from a first-person perspective, without actually experiencing the disease, accurately depicting it is impossible. At this point, the affected person is not even able to convey organized ideas or thoughts, which means providing a firsthand recap is also impossible.

Literature

In Alzheimer’s, a person has to rely exclusively on others to perform the most basic of tasks since, in this disease, the sense of self is lost, as well as the ability to fend for themselves. Knowledge is an important asset for those who support their loved ones. As such, medical knowledge has been combined with anecdotal experiences by authors and experts to accurately depict how the disease evolves and how it affects the patient from a first-person perspective.

The problem with some literature

Because it is difficult to know what the disease is like, sometimes speculation is required to give a true-to-life depiction of it. The person still retains a certain degree of lucidity and they can convey some basic ideas up until the penultimate phase of the disease. However, the individual will lose most of their basic functions as the disease progresses into the advanced and final stages. So, when attempting to describe the disease, many authors are forced to theorize what it’s like.

Writers 

Some writers have put pen to paper on several occasions to try and capture the effects of Alzheimer’s. These include Diane Keaton, David Shenk, and Thomas DeBaggio. They have created novels about the harsh reality of those who suffer from the disease. Their stories are works of fiction, and although some are based on genuine medical information, they also present anecdotal information about the condition. 

David Shenk’s The Forgetting Alzheimer’s

David Shenk’s book, The Forgetting Alzheimer’s: Portrait of an Epidemic, explores the findings of Alois Alzheimer, a neurologist in the early twentieth century, as well as provides an overview of Alzheimer’s. The book talks about how he detected fibers and plaques in the brain autopsies of two victims. These victims were bedridden before their deaths and suffered symptoms including memory loss, delirium, and deterioration of their sense of self. The book also explores other Alzheimer’s cases while giving a realistic overview of the disease, although it is dark and depressing. Those whose love ones are afflicted by the disease can greatly benefit from this book.

Lisa Genova’s Still Alice

This book depicts a woman’s journey with Alzheimer’s. It focuses on Alice Howland as she goes through dementia due to early-onset of Alzheimer’s. This book acts as an informative guide for caregivers.

More books

There are many books about Alzheimer’s that also depict how a person and those around are affected by the disease. Several are standalone novels. To those currently suffering from the early stages of Alzheimer’s, such books can provide much needed support: some help them to understand the condition, while others may provide solace in times of turmoil. Some may be helpful for caregivers whose loved ones are in the advanced stages of Alzheimer’s.