When Karen Frost got a call from her mother saying "I just want to keep you in the loop," she knew to pay attention.
Her father got lost trying to find his wife in the hospital after a routine appointment and was missing for several hours before she found him.
When Alita Aldridge got a call from her mother accusing her grandson of taking money and stealing her food, she, too, knew something was wrong. Her mother had always been loving and rarely raised her voice. Suddenly, expletives peppered her outbursts.
Though their symptoms were different, both women's parents were ultimately diagnosed with Alzheimer's disease, a brain-wasting illness that afflicts 5.4 million people in the USA, destroying memory, thinking and personality. It also takes a heavy toll on caregivers. The Frosts got a quick diagnosis and started mapping out their future. But Aldridge says her mother's condition went undetected for several years, and the personality changes distanced her from her family and finally landed her in the emergency room.
"I didn't know very much about Alzheimer's disease," she says. "I thought memory was affected, but I didn't think personality was. My mother's personality had changed. We even went to a doctor who said my mother was fine. What were we supposed to do at that point?"
Starting Sunday, researchers at the Alzheimer's Association International Conference 2012 in Vancouver, Canada, will discuss new findings on early warning signs to evaluate cognitive function sooner and on new therapies that might slow the disease's progression. The conference is expected to draw 5,000 researchers from around the world, and it follows the U.S. government's announcement in May of an ambitious plan to increase awareness and find a way to prevent the disease by 2025. Nearly half of those 85 and older have it, and the number is expected to be 16 million by 2050.
Alzheimer's is the second-most-feared disease - behind only cancer, says Beth Kallmyer, vice president of constituent services for the Alzheimer's Association. Even though there is no cure, early diagnosis is the ticket, she says: People can treat symptoms and plan for their future while they're still able. "People can also check that bucket list," she says, and "maybe reprioritize."
Karen Frost, 44, says she and her siblings noticed their father, Bill, had been losing bits of vocabulary for several years. Part of normal aging, they thought. But when he got lost in the hospital five years ago, the family headed to experts for an answer.
He was hospitalized for three days; doctors ruled out a stroke, then ran other tests, which showed he had mild cognitive impairment (MCI), defined as early-stage Alzheimer's. It is often treated with Aricept, which improves certain mental functions. It doesn't slow disease progression forever, but it helps some patients for a while. He went on Aricept immediately.
"When they told me I had Alzheimer's, my mood went down," says Bill Frost, 74. "But that night I said a prayer. Ever since then, I've said I'll never, ever give up."
He took part in one drug trial and is participating in another. "I'm going to be the first person cured of this disease," he says.
Early diagnosis is key
Though current trials and several others about to begin probably will be too late to benefit Frost, research is showing the importance of early diagnosis. Once the process that destroys brain cells has begun, the disease is irreversible. But if researchers can find a way to catch it early and slow it down, they think they can prevent much of the worst damage.
William Thies, chief medical and scientific officer at the Alzheimer's Association, says he expects antibodies already in trials to someday help prevent Alzheimer's by stopping the formation of harmful protein deposits called amyloid plaques, a hallmark of the disease.
"There are a number of ideas out there for prevention," Thies says. "The most prominent has been if you moderate the amyloid plaque, you moderate the course of the disease."
Thies has watched the evolution of preventive therapies before; he worked for 10 years at the American Heart Association and remembers when cholesterol-lowering statin drugs were given to people only after they had heart attacks. Now, they are used for prevention and are among the most widely prescribed drugs in the USA.
When the government launched a plan in May to step up its attack on Alzheimer's, the National Institutes of Health chipped in $17 million for a $100 million trial. It is being discussed at the conference.
The initiative is hailed by researcher Eric Reiman as "a new era of Alzheimer's research." Reiman is with Banner Alzheimer's Institute in Phoenix, which is partnering with the NIH, drugmaker Genentech and the University of Antioquia in Medellín, Colombia, home of a large family with a genetic predisposition to develop the disease at a young age, and who, Reiman says, regard it "as a curse."
An experimental antibody called crenezumab will be tested to see whether it can sustain memory and cognition in about 300 family members who are in their 30s. They have the gene for early-onset Alzheimer's but have not yet shown symptoms.
Laurie Ryan of the National Institute on Aging says the timing of this trial follows others that have advanced the understanding of how the disease progresses. For instance, several trials concluding this summer are testing antibodies in people exhibiting symptoms, but some research suggests even that might be too late to start. The results are expected by October.
"New research is telling us earlier intervention is better," says Ryan, program director for the institute's Alzheimer's Disease Clinical Trials program.
Knowledge is power
Nancy Frost, Bill's wife, wants more money for research.
"AIDS was 100% fatal before the government stepped in and spent millions on research," she says. "Now that disease is a chronic one like diabetes. They didn't cure AIDS, but they're controlling it. That's what we have to do with Alzheimer's. The Baby Boomers are going to be hit hard by this."
Her kids are aware of that reality; the disease appears to run in their family. "We think our dad's mother had it, and we're pretty sure his grandmother had it," says Alison Frost, 49.
David Frost, 46, wants to know if he is carrying a gene that increases his risk for Alzheimer's, but his physician "is resistant," he says.
Alita Aldridge, 60, knows that when doctors defer making a diagnosis, the result may be life-threatening.
Aldridge lives in Los Angeles; her mother lived alone nearby. Last September when Aldridge stopped by to visit, she found her mother slumped over her kitchen table.
"I took her to the emergency room," she says. "It was horrible. They had to restrain her because she kept getting up. Her anxiety levels were off the charts. She had forgotten to eat."
Doctors there diagnosed her. Bertha Aldridge, 92, is now living at home with 24-hour care. She still recognizes her children and is gaining weight, but little holds her interest, not even television, says her daughter, who worries about how long they can afford the 24-hour care.
Meanwhile, Bill and Nancy Frost are still making their own plans. That's another plus to early diagnosis, Kallmyer says: "No one wants to have a spouse or children have to take care of them," and people with Alzheimer's can't monitor their own food intake or medications. If they have other conditions, like diabetes, they need close supervision.
Last weekend, Nancy Frost says, "we filled out the forms for a life care facility in Corpus Christi. Bill can move into a memory care center when he needs to, and I can stay in assisted living. We looked at other places, but we like Corpus Christi, being near the beach."
One of Bill's favorite activities has hooked him on the move.
"They take them out charter fishing every day," says Karen Frost. "He's one happy man.
"We have gained so much respect for him because of how he's handling this."