Thursday, April 30, 2015

What Is Alzheimer's Disease?

At the first Alzheimer's Memory Walk I coordinated, a reporter from a local radio station placed a recorder beneath my chin, and asked, “What is Alzheimer’s?” When he had asked for an interview, I expected him to ask what our financial goal was for the walk, why I was personally involved, what the money was used for, who our sponsors were, what it was like to be a caregiver, or even why purple was the “official” color. For some reason, it never occurred to me that he would ask me to define Alzheimer’s disease.

I believe my answer was, “Alzheimer’s is an incurable degenerative brain disease that affects memory and a person’s ability to perform daily tasks.”

Alzheimer’s is not an easily defined disease. Even if you give a textbook, or dictionary, definition, it falls so far short of the scope of the disease that you might as well describe a malignant brain tumor as “a headache.”

Yes, official definitions might give a clinical description that says “a general term for memory loss and other intellectual abilities serious enough to interfere with daily life.” I’m not so sure that this disease “interferes with” daily life so much as it replaces life with a new reality. You go to a place where nothing is the way it had been, and you know it never will be the same.

It is important to know what Alzheimer’s does to the brain; otherwise, you will expect the impossible. Without the knowledge that the brain is deteriorating, it is too easy to believe that someone is being willfully stubborn or “pretending” they cannot remember.

In 1906, Dr. Alois Alzheimer, a German psychiatrist and neuropathologist, had a fifty-one-year-old patient, Auguste Deter, who died after she exhibited odd behavior and suffered from memory loss. During the autopsy of her brain, Dr. Alzheimer discovered shrinking of the cortex, and the presence of amyloid plaques and neurofibrillary tangles. Amyloid plaques and tau tangles became the hallmark of Alzheimer’s disease.

Most research centered on ways to rid the brain of amyloid plaques. More recently, researchers at Mayo Clinic have focused on tau. The study’s lead author, Neuroscientist Melissa Murray, Ph.D, in Brain described the role of tau as “railroad ties that stabilize a train track that brain cells use to transport food, messages and other vital cargo throughout neurons.” She described tau as “the driver of Alzheimer’s.”

As research moves closer to unlocking the mystery of Alzheimer’s, it is important to note only 45% of those with Alzheimer’s, or their caregivers, report being told of the diagnosis. This compares to 90% of people with cancer and cardiovascular disease knowing their condition.

Why is it so important to know of an Alzheimer’s diagnosis since the disease is incurable and has no treatment to slow the progression? I know from experience that crucial decisions need to be made while the person with the disease can help make them. It is important to get finances in order and to put in place medical and financial durable power of attorney documents. Knowing the diagnosis will also help families connect with community resources.   

The video attached to this blog explains how Alzheimer’s affects the brain. To know how it affects lives and hearts, talk to a person with the disease or a caregiver. They are all too familiar with the daily challenges that truly define the disease.   

Copyright © April 2015 by L.S. Fisher

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