Alzheimer's: “If you have a brain, you're at risk” Incurable brain disease feared by many, talked about by few
Dr. Bruce Cotugno diagnoses patients with Alzheimer's disease at the Adult Neurology Center in Washington. Katie Roupe/Observer-Reporter
ERROR: Object template ArticleByline is missing! Editor's note: This is the first in a monthly series of stories focusing on Alzheimer's disease and dementia.
Four of Rudy Keron's sisters died from Alzheimer's, but despite his siblings' troubling history with the disease, he never once had a conversation about it with his wife, Judy, in the 32 years they have known each other.
And although he couldn't bring himself to talk about Alzheimer's, the tangles and plaques that rob Alzheimer's victims of their memory began long ago to form in his brain.
Keron, 74, was diagnosed with the disease seven years ago, and it has progressed relentlessly, leaving him unable to speak, brush his teeth or recognize his family. After caring for Keron in their Washington home by herself for five years, Judy made the difficult decision to move him to the Washington County Health Center in 2012.
“I'm not sure why we didn't talk about it. I think he probably didn't want to deal with it. Maybe he thought, “They're girls, I'm a guy, I won't get it,” said Judy Keron, 59. “We never talked about death or Alzheimer's. We thought we had time, that we'd have a life. But we didn't.”
If Keron, a combat photographer in Vietnam who worked at Allegheny Ludlum and once owned a pizza shop, was frightened by Alzheimer's, he is not alone. According to a recent Marist Poll, Americans rank it as the most feared disease – more than cancer, stroke, heart disease and diabetes.
With good reason: it is a fatal brain disease for which there is no cure.
Judy Keron shares a moment with her husband, Rudy Keron, at the Washington County Health Center. Rudy was diagnosed with Alzheimer’s disease seven years ago and now resides in the Alzheimer’s unit at the center. Judy visits Rudy frequently and calls on days she can’t visit. Katie Roupe/Observer-Reporter
The most common form of dementia, Alzheimer's is named for German physician Alois Alzheimer who, in 1906, found changes in the brain tissue of a 51-year-old woman who suffered from symptoms of dementia before she died. Alzheimer noticed abnormal clumps (later identified as amyloid plaques) and tangled fibers (tangles) on the woman's brain cells. Those plaques and tangles are two of the main features of Alzheimer's, according to Dr. Oscar Lopez, director of the University of Pittsburgh Alzheimer's Disease Research Center.
“We know this: Alzheimer's is caused by these proteins that form plaques and tangles throughout the brain, which block communication between neurons and ultimately kill them. But what we don't know is what causes the proteins to form. And since we don't know the cause, we cannot have a cure,” Lopez said.
The toll that Alzheimer's takes on its victims like Keron is astonishing: loss of memory (for remembering rules to a board game); loss of control over moods and feelings; diminished sense of smell; a growing inability to recognize friends and family and to perform tasks with multiple steps, like getting dressed; compromised balance and coordination; hallucinations. In its last stage, when brain tissue has shrunk significantly, Alzheimer's destroys the brain's ability to regulate breathing and the heart, and the body shuts down.
According to the Alzheimer's Association, most people survive four to 12 years after diagnosis, but Alzheimer's sufferers can live as long as 20 years with the disease.
“It is incredibly sad,” said Dr. Bruce Cotugno, a neurologist at Adult Neurology Center in Washington, who diagnosed Keron with the disease. “At times it gets you very sad, when you see patients in their home saying, “I want to go home,” or they're with their spouse and say, “Who are you?”
Often, Alzheimer's patients are brought in for diagnosis by concerned relatives (the Alzheimer's Association provides a list of 10 early warning signs on its website at www.alz.org).
Judy Keron suspected something was amiss after her father died and Keron, who had helped Judy care for him, continued to drive to his house to check on him. Then one day, as the couple prepared to leave for a night of karaoke at the Moose Club, Keron asked Judy how to get there, even though they went regularly. And Keron, who used to play in a band and loved music, became withdrawn.
Worried, Judy scheduled an appointment with Cotugno, who gave Keron a commonly used mental status test called the mini-mental state examination (MMSE), which takes about 10 minutes to complete.
During the test, patients answer a series of questions designed to test a variety of everyday mental skills, like counting backward by sevens, drawing the face of a clock or writing the names of 12 animals. Cotugno said he often knows at the conclusion of the MMSE test whether or not a person likely has Alzheimer's. Keron failed the test.
Keron also underwent physical and neurological tests to rule out another medical disorder (such as a vitamin deficiency) that may have caused Alzheimer-like symptoms.
Doctors can make a probable diagnosis of Alzheimer's, but the only time a definite diagnosis can be made is at autopsy, when a pathologist confirms the widespread presence of plaques and tangles in the brain.
“I was in denial when we got the diagnosis,” said Judy. “I took Rudy to Pittsburgh for additional tests at Allegheny General Hospital and had CAT scans sent to them, but the doctors said the prognosis was right. But you grasp at straws, you look for any other explanation that you can.”
The single greatest risk factor for Alzheimer's is age. While the disease can occur in younger people (according to the Alzheimer's Association, about 4 percent of the more than 5 million Americans living with Alzheimer's have early onset, which affects people younger than age 65), the risk grows considerably after age 65. And almost two-thirds of Americans with Alzheimer's are women. A woman in her 60s has a 1 in 6 chance of developing Alzheimer's, according to the 2014 Alzheimer's Disease Facts and Figures, released March 19.
Scientists believe that Alzheimer's is caused by a combination of multiple factors that can include a family history of Alzheimer's, stress, serious illness or injury, inadequate physical and social activity, and poor diet.
“If you have a brain, you should be worried about Alzheimer's,” said Angela Geiger, chief strategy officer for the Alzheimer's Association, during a recent conference call.
Those who have a parent, brother, sister or child with Alzheimer's are more likely to develop the disease. The risk increases if more than one family member has the illness.
Researchers have identified a risk gene, APOE-e4, carried by as many as 20 percent of Americans, that increases the likelihood of developing Alzheimer's, but does not guarantee it will happen.
There is also a rare, deterministic gene found in only a few hundred extended families around the world (less than 1 percent of Alzheimer's cases) that causes early onset Alzheimer's in a person's early 40s to mid-50s.
Lifestyle is a factor in maintaining health in the aging brain, Cotugno and other experts say, and can possibly delay Alzheimer's disease.
“I like to tell people in their pre-dementia or forgetfulness stages that dietary modification and healthy living habits are the best thing to do,” said Cotugno. “You always want to keep your mind as active as you can. We don't want patients to be withdrawn in front of the TV. You want interaction with other people, playing cards, going shopping with friends, doing crossword puzzles, things to keep your mind active.”
Judy Keron said she knew nothing about Alzheimer's before Keron was diagnosed with the disease.
“It's awful. Rudy was always so nice and mild-mannered. He loved music, wood working, drawing. He was so much fun to be with,” said Judy. “He can be real nasty, swinging at people; then, just like snapping a finger, he'll be nice. I'm always looking on the Internet or reading pamphlets, but you have to be careful because some of the information is misleading. Sometimes it gives a sense of hope, and that's the worst thing, for them to make you think it can get better. It's not going to get better for him.”