It started with my mother forgetting how to get around in a small town in which she had lived for over three decades. As it continued she became unable to remember how to make many of our family’s favorite meals. Soon, she was misplacing her keys, forgetting to pay bills and asking the same questions over and over again.
We began to wonder what was wrong and while hoping for the best, realized that our worst fears would probably be confirmed – they were after we took our 87-year-old matriarch, former educator, church leader and community volunteer, to her physician. My mother was diagnosed with Alzheimer’s.
As the reality set in, I began to do my research – not as a veteran reporter but as a beloved son, concerned as to what I could do, how I could help – all the while fearful that there might be nothing that I could do to slow the daily erosion of my mother’s mental abilities.
Our family’s story echoes those of millions of other Americans.
In 1993, when President Ronald Reagan designated November as National Alzheimer’s Disease Awareness Month, fewer than 2 million Americans had Alzheimer’s. Today that number has soared to nearly 5.4 million and medical experts predict that as the Baby Boomer generation lives longer and grows older, the number of cases will inevitably rise to record heights.
In fact, as the 76 million “Boomers” age, if no medicines are found to prevent, delay or stop the progression of Alzheimer’s disease, the number of people affected in the U.S. will jump to 15 million by 2050, according to the Alzheimer’s Association. Cost of care could increase five-fold to $1.2 trillion a year.
Today, the disease ravages the minds of patients, burdens families and currently costs the health care system an estimated $200 billion a year.
Data from the 2010 U.S. Census and the Chicago Health and Aging Project [CHAP] indicates that one-in-nine people age 65 and older [11 percent] has Alzheimer’s. Eight-one percent of people who have the disease are age 75 or older.
But what exactly is Alzheimer’s — what are the signs and symptoms associated with the disease?
The degenerative brain disease, and the most common cause of dementia, is characterized by a decline in memory, language, problem-solving and other cognitive skills that affects a person’s ability to perform everyday activities. Neurological damage eventually affects parts of the brain that enable a person to carry out basic bodily functions such as walking and swallowing.
People in the final stages of the disease are often bed-bound and require around-the-clock care. For now, the disease is fatal.
But America’s biopharmaceutical research companies are in the throes of developing 73 potential new treatments and diagnostics for Alzheimer’s. However, as officials from the Alzheimer’s Association said, the path from basic research to new medicines is extremely complex with setbacks along the way.
One recent analysis conducted by the Pharmaceutical Research and Manufactures of America [PhRMA], whose mission is to “win advocacy for public policies that encourage the discovery of life-saving and life-enhancing new medicines,” found that from 1998 to 2011, there were 101 unsuccessful attempts to develop drugs to treat Alzheimer’s – or as some call them “failures.”
In that time, only three new medicines were approved to treat the symptoms of the disease. However, as they point out, setbacks in Alzheimer’s research, while disappointing to patients, their families, healthcare providers and the scientists carrying out the studies, serve as critical “stepping stones to advancing the understanding of this extremely complex disease.”
Gleaned from sources that include the U.S. National Institutes on Health and the National Institute on Aging, four words describe the main symptoms of Alzheimer’s: amnesia, referring to memory loss and is often the most easily visible and common sign of the disease; aphasia, which describes impaired communication which may include speech, language, and the ability to read and write; apraxia, a deficit in voluntary motor skills often manifested as a decline in one’s ability to do daily activities like bathing, walking, getting dressed and eating; and agnosia, which impairs the ability to receive or correctly understand information from the senses of hearing, smell, taste, touch and vision. For example, being less able to identify smells or understand the feeling of a full bladder.
Returning to the impact of this disease from a personal perspective, I, and my family, realize that the woman who has been mother, grandmother, great-grandmother, aunt, sister and wife often cannot respond to us in ways we have long grown accustomed. Still, she laughs, smiles and finds ways to communicate. She recognizes us and can recount incidents that took place 60 years ago. And we listen.
Doctors suggest that we maintain a routine, that we engage her in daily, gentle communication, that we hold her hand, give her frequent hugs, increase visual stimulation such as colors and pictures and especially allow her to hear plenty of music.
Our family physician has also warned us that as her body loses strength, that she may be more susceptible to infections like pneumonia which often causes the death of those with Alzheimer’s.
For now, we take it one day at time — just as millions of other families do.
And we love her fiercely.
Yes, that’s my momma. She has Alzheimer’s.
Editor’s Note: This article deviates from the normal rubrics associated with news stories. I trust that our readers will allow me this indulgence as I attempt to inform you on this disease while at the same time illustrating its personal impact on one family — my own.