Catching up with Alzheimer's
by Evelyn Bartin
It's Wednesday, 8:45am, and I've just finished my almost-daily phone call with my dear friend, Thomas. Our relationship began in college, and so I'm pleased to say that Thomas is also my longest-standing friend. In fact, 2009 marks the 40th anniversary of our shared history—four decades of life events that have spanned the period beyond our undergraduate days: his career, my marriage; his "coming out," my widowhood; his mother's death from Alzheimer's, my mother's death from Alzheimer's.
Though Thomas and I talk nearly every morning, it seems we're never at a loss for subject matter. Indeed, we often drift into discussions of a new book or movie or play that one or the other or both of us have recently enjoyed (or disliked). Thomas is one of the most literate humans on the planet; and me, I ain't no slouch with the language either. So even at this early hour our chats can become very lively and animated. But every now and then he or I will struggle for a word that, for no apparent reason, has this day become elusive:
"Oh, Thomas, you know, what do you call that piece of music we heard in the park a couple of summers ago? It begins with an o."
"Oratorio?"
"Yes, thank you, oratorio!"
When we were in our 20s and 30s and 40s we would laugh about an episode like this and dismissively call it Youngheimer's. Now we're in our 50s and we no longer joke about or dismiss it. We know that the prospect of our respective mothers' genes catching up to us is a distinct possibility. And even if we didn't have genetics working against us, we also know that members of our generation are expected to live to older ages than our parents, making Alzheimer's yet more likely. In short, though we don't dwell on it, we're both frightened.
And our fear is not unfounded. The statistics for Baby Boomers and Alzheimer's disease are staggering. In a report released this past March, 2009 Alzheimer's Disease Facts and Figures, the Alzheimer's Association tells us the following:
There are currently 5.3 million Americans living with Alzheimer's. Every 70 seconds someone in America develops the disease.
Given the number of rapidly aging Baby Boomers, by mid-century someone will develop Alzheimer's every 33 seconds. By 2050 there will be nearly a million new cases per year.
Alzheimer's is the sixth leading cause of death in the country, surpassing diabetes. It is the fifth leading cause of death among individuals 65 and older.
From 2000 to 2006, while deaths from other major diseases dropped (heart disease, -11.5 percent; breast cancer, -.6 percent; prostate cancer, -14.3 percent; stroke, -18.1 percent), deaths from Alzheimer's disease rose 47.1 percent.
What Is Alzheimer's?
Alzheimer's disease is a brain disorder named for the German physician Alois Alzheimer, who first described it in 1906. Several important facts stand out about this illness. First, Alzheimer's is the most common form of dementia, accounting for 50 to 70 percent of cases. Second, Alzheimer's is a progressive disease, destroying brain cells and causing problems with memory, thinking and behavior. It gets worse over time, and it is eventually fatal. Finally, though there is currently no cure for Alzheimer's, there is a growing worldwide effort to find better ways to diagnose and treat the disease, delay its onset, slow its progression, or prevent it from developing.
The brain has 100 billion nerve cells (neurons) that communicate with one another to form networks. Each network has a different job—thinking, learning, remembering, seeing, hearing, smelling, moving muscles, etc. In Alzheimer's disease, as in other types of dementia, increasing numbers of brain cells deteriorate and die.
Two abnormal structures—plaques and tangles—are the prime suspects thought to damage and kill nerve cells. Plaques build up between nerve cells and contain deposits of a protein fragment called beta-amyloid; tangles form inside dying cells and are comprised of twisted fibers of another protein called tau (rhymes with wow). While scientists are not absolutely sure what role plaques and tangles play in Alzheimer's disease, most experts believe they somehow block communication between nerve cells and disrupt the activities that cells need to survive.
Risk Factors
The greatest known risk factor for Alzheimer's is increasing age. Most individuals with the disease are 65 or older, though Alzheimer's does strike people under 65 (early-onset cases). The likelihood of developing Alzheimer's doubles about every five years after age 65. After age 85, the risk reaches nearly 50 percent.
Another risk factor is family history. Research has shown that those who have a parent, brother or sister with Alzheimer's are more likely to develop the disease than those who do not. The risk increases if more than one family member has the illness.
Scientists also know that genetics (heredity) are involved in Alzheimer's. Two categories of genes can play a role in determining whether a person develops a disease: the APOE-e4 (apolipoprotein E-e4) risk gene, and the very rare deterministic genes (found in less than 5 percent of cases).
Some of the strongest evidence links brain health to heart health—known as the heart-head connection. The brain relies on its nourishment from the heart, with each heartbeat pumping about 20–25 percent of the blood's food and oxygen to the head.
According to the Alzheimer's Association, there also appears to be a strong link between serious head injury and future risk of Alzheimer's.
And finally, there is other evidence that suggests that following the strategies of overall healthy aging (keeping body weight within recommended guidelines, avoiding tobacco and excess alcohol, exercising both body and mind, keeping socially connected) may help to keep the brain healthy and even offer some protection against developing Alzheimer's.
Symptoms
The Alzheimer's Association lists ten signs of Alzheimer's. They are:
Memory loss. Short-term memory loss—that is, forgetting recently learned information—is one of the most common early signs of dementia. It is not unusual for a person with Alzheimer's to recall childhood events while forgetting what he or she had for breakfast a mere hour before.
Difficulty performing familiar tasks. Individuals with Alzheimer's may lose track of the steps to prepare a meal or place a telephone call. (As one TV-news doctor explained: forgetting where the car keys are is okay; forgetting what the car keys are for is not.)
Problems with language. People with Alzheimer's often forget simple words or substitute incorrect words, making their speech or writing hard to understand. (For instance, I remember during the mid-stages of my mother's case that she would grab on to the first letter of the intended word but go off from there, so that "hello" might become "hot" or "hungry.")
Disorientation as to time and place. What was once a familiar neighborhood or a well-traveled trip to the supermarket might become a nightmare, with Alzheimer's sufferers forgetting where they are, how they got there, and panicked about how to get home.
Poor or decreased judgment. Those with Alzheimer's may wear layers of winter clothing on a hot summer day, give large amounts of money to telemarketers, or set the kettle to boil with no water inside.
Problems with abstract thinking. Someone with Alzheimer's might forget what numbers are and how they're used.
Misplacing things. A person with Alzheimer's may put garbage in the washing machine or a wristwatch in the freezer. In the later stages of Alzheimer's this might also exhibit itself as a kind of "packratting"—gathering "collections" of things and hiding them in unlikely places. (For instance, we one day found a tremendous amount of paper "stored" under my mother's bed. Her "stash" contained everything from supermarket coupons, to the deed for the house, to empty Jello boxes.)
Changes in mood or behavior. Wide mood swings are common in people with Alzheimer's, and become more so as the disease progresses. It is not unusual for someone with Alzheimer's to be serene and smiling one moment, and enraged and ranting the next. As Alzheimer's advances, people in its grip are also prone to a phenomenon called "sun-downing," whereby the sufferer becomes highly agitated, paranoid, and often combative during the late afternoon and early evening hours.
Changes in personality. Those with Alzheimer's can become extremely suspicious, highly fearful or inordinately dependent on a family member. (Again, in my mother's case, as the disease progressed, so did her paranoia. I remember one particular episode when she focused on a little boy playing across the street. In her state of extreme agitation, she seemed convinced he was "coming over to kill her" and pleaded with me to shoot him.)
Loss of initiative. A person with Alzheimer's may become very passive, eventually sleeping away most of the day.
As the disease progresses into advanced stages, individuals may also suffer from increasingly difficult behavioral and psychiatric symptoms. These people may experience frequent physical or verbal outbursts; constant emotional distress; extreme restlessness, frantic pacing, all-consuming paper or tissue shredding; on-going yelling; hallucinations; and/or delusions.
Treatments
In the 2009 Facts and Figures report Harry Johns, Alzheimer's Association CEO, states: "Currently, there are no treatments that can prevent, delay or reverse Alzheimer's disease and research funding has been stagnant for the past six years. With the first Baby Boomers turning 65 in just two short years—and entering the arena of increasing risk for developing Alzheimer's—an aggressive plan is needed now to address the threat of this disease. There are too many lives, too little time and too much at stake for anything less."
This same report calculates healthcare costs per person measured from all sources: Medicare payments alone are almost three times higher for people with Alzheimer's and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher. In addition, the report takes into consideration the 70 percent of cases in which family members provide care at home for people with Alzheimer's. According to Fact and Figures, in 2008 nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care, valued at $94 billion.
Treatments currently exist for both the cognitive and behavioral symptoms of Alzheimer's. The U.S. Food and Drug Administration (FDA) has approved two types of medications to treat cognitive symptoms: cholinesterase inhibitors, which prevent the breakdown of acetylcholine (a chemical messenger important for learning and memory); and memantine, which works by regulating the activity of glutamate (a different messenger chemical involved in learning and memory). For both types of treatments, the five FDA-approved drugs are: donepezil (Aricept), galantamine (Razadyne), memantine (Namenda), rivastigmine (Exelon), and tacrine (Cognex).
Treatments for the more advanced and/or extreme behavioral and psychiatric symptoms include both medications and non-drug therapies. When medications are prescribed, they may consist of: antidepressants (for mood or irritability); anxiolytics (for anxiety, restlessness, verbally disruptive behavior or resistance); or antipsychotics (for hallucinations, delusions, aggression, agitation, or hostility). However, use of antipsychotics should be weighed carefully and used only when severe symptoms are in evidence, since adverse side effects require careful monitoring.
Besides these, other alternative treatments currently being tried and studied include using Vitamin E and changing sleep habits. Also, several new drugs under development by the pharmaceutical companies are in various stages of testing and clinical trials.
The Future
The Facts and Figures report concludes by telling us that experts believe early detection of Alzheimer's disease and early intervention with improved therapies provides the greatest opportunity to delay or stop additional damage to the brain. To that end, the report highlights the emerging role of a condition known as mild cognitive impairment (MCI). A person with MCI has problems with memory, language or other essential cognitive functions that are in evidence enough to be noticeable to the individuals themselves and others, but not severe enough to interfere significantly with daily life. Individuals with MCI have a higher risk for developing Alzheimer's, but it's not clear why some people with MCI go on to develop the disease and some do not. The report encourages people with MCI to participate in scientific studies and clinical trials to help speed research findings.
On April 2, 2009, almost immediately following the Facts and Figures report, HealthDay News released the following information on research being conducted at the U.S.-based Burnham Institute: "By uncovering a mechanism that causes damage to brain synapses during Alzheimer's disease, researchers might have found a key to reducing or preventing nerve degeneration for these patients." Most scientists agree that uncovering the mechanism will be the key. Without this understanding, no cure or prevention is possible. As research and study continue, perhaps the Burnham work will prove pivotal.
In the meantime, Thomas and I—and I imagine many, many others—will keep our fingers crossed... and make our donations.
Evelyn Bartin is a resident and business owner in Milan. Her mother, Emily Bartolomeo, died from Alzheimer's in January, 2002, after suffering with the disease for many years.