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Untangling the mystery of Alzheimer's

4:54 AM, Sep 13, 2013   |    comments
Dana Valletta visits her mother, Ann Marie Belcher, at Emeritus at Chandler. Valletta worries about getting early onset Alzheimer's like her mother and what it means for her and her 7-year-old daughter. (Photo: Cheryl Evans, The Arizona Republic)
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PHOENIX -- The old baby photos, love letters and knickknacks collected decades ago sat in neat stacks in Ann Marie Belcher's home.

But other items scattered about randomly - a bag of jelly beans in a medicine chest, a utility bill in a bathroom drawer and wristwatches everywhere - hinted that, in more recent times, Belcher had lost the ability to complete ordinary tasks.

Dana Valletta knew that her mother's thoughts could be jumbled. She did not know the extent of the memory decline until she inspected Belcher's house following an Alzheimer's diagnosis more than three years ago.

"When we unraveled her house, it was just like the brain of somebody with Alzheimer's," Valletta said. "Everything that was long term was put away neatly. Everything that was short term was in shambles."

The revelation that Belcher, a woman who aced job reviews and completed New York Times crosswords in pen, had masked the disease for years was startling enough. Valletta's conversations with aunts and uncles revealed an even more troubling fact: The disease, which has no known cure, had multigenerational roots in her mother's family.

Valletta, a pediatric nurse practitioner with a daughter in second grade, flung herself full force into fighting the disease. She absorbed everything she could read and took steps to protect herself. She shed weight, exercises regularly, gets adequate sleep and manages her stress.

She also joined a small army of volunteers who will offer their time to scientists seeking ways to cure or halt the disease. She joined a national Alzheimer's Prevention Registry, launched last yearby Banner Health in Phoenix to recruit thousands of volunteers willing to participate in medical studies. Valletta wants to help advance research that will likely have little direct benefit for herself but may give her daughter's generation hope.

Valletta, 47, understands that she faces a genetic roll of the dice: Given her family's lineage, she may be at risk for Alzheimer's. She has no current plans to test herself but will gladly participate in clinical drug trials if scientists ask her to.

The Phoenix woman knows her 69-year-old mother's memory began to fade much too early, when Belcher was in her late 50s. Valletta also recalls visiting her grandmother in a hospital, where the elderly woman, diagnosed with senile dementia, would have the same daily conversation with her nurse: "You're Italian? We're Italian, too."

And when Valletta's great-grandmother was in her early 50s, she was found outside naked in a snowstorm near a bridge. She never left the house again.

"My mother, my grandmother, my great-grandmother. It has to stop," Valletta said. "I have a 7-year-old daughter. If I put my daughter through what I'm going through now, she'd be in her late teens or early 20s. I can't do that. I can't do that to anyone."

Before it starts

The stakes are enormous, and time is limited. Alzheimer's and public-health experts warn of cascading demand for resources and health services to treat the projected numbers of adults who will be afflicted with the disease.

In the United States, more than 5 million suffer from Alzheimer's disease, which is the sixth leading cause of death. The number of people with the disease is expected to swell to 8 million in 2030. The financial tab - medical bills, caregiving and other costs - is projected to reach $1.2 trillion by 2050.

With such a steep emotional and financial toll, doctors and scientists are racing to find an effective treatment to halt or slow down progression of the disease, which strikes before people show overt signs. A person's memory and thinking problems grow more severe over time, often robbing the ability to respond to others, walk, smile, sit up or swallow. Patients develop fatal secondary infections. Organs stop functioning.

The Obama administration last year launched the National Alzheimer's Plan, which seeks to fund research, accelerate drug development and improve diagnosis and treatment.

The national plan coincides with a new push from Alzheimer's groups, drug companies and patients to attack the disease at its earliest stages. The theory goes that if researchers can identify people whose genetic makeup, family history and early brain changes put them at risk, could drugs halt or slow the march of Alzheimer's before symptoms appear?

The task is large. Pharmaceutical companies have invested hundreds of millions to discover and develop a blockbuster drug that may halt progression of the disease. So far, efforts have failed. Patients who took these drugs in clinical trials did not see symptoms slow or reverse.

Still, scientists are undeterred. Alzheimer's researchers believe that previous drug trials targeted patients too late, after the disease already wrecked the brain and ravaged memory and thinking.

"We have learned from recent drug failures that by the time somebody actually has functional symptoms of Alzheimer's, too much damage has been done to the brain," said George Vradenburg, chairman of USAgainstAlzheimer's, a Washington, D.C.-based non-profit group. "We have to work to get potential drug candidates to the patients earlier in the disease process."

Alzheimer's researchers believe they now have the tools to intervene sooner. Brain scans, spinal taps and memory tests can discern the earliest signs of the disease before a person exhibits overt signs such as forgetfulness.

"These are things that are not visible to the naked eye," said Dr. Pierre Tariot, director of Banner Alzheimer's Institute. "We found a way to measure subtle memory and thinking difficulties even earlier in people who otherwise manifest no unusual symptoms and appear to be functioning normally."

But to test the theory that Alzheimer's can be stopped with the correct drug or treatment, scientists need volunteers. By 2015, Banner aims to recruit up to 250,000 people with a family history, a genetic predisposition or who are healthy, and will make its registry available to academic and pharmaceutical companies that are conducting prevention trials.

"We are going to need thousands and thousands of volunteers to screen for a few hundred (drug-trial participants)," said Jessica Langbaum, program director of the Alzheimer's Prevention Registry. "We may need to screen 10,000 to find 600 people."

Colombian ties

Banner Alzheimer's Institute already has launched a highly anticipated $100 million study funded with a $16 million National Institutes of Health grant and $15 million from the Banner Alzheimer's Foundation. The balance will come from from Genentech, a South San Francisco biotech company that makes an experimental drug called crenezumab, which removes amyloid plaques in the brain, a hallmark of the disease.

For the study, 100 members of an extended Colombian family who carry a mutated version of the presenilin 1 gene, which guarantees early-onset Alzheimer's, will be given crenezumab; other family members will take a placebo. The study also will track a small number of Americans who carry another genetic mutation that is a trigger for early-onset Alzheimer's.

Banner scientists have applied for a federal grant for a second, larger study of carriers of a risk gene called APOE4. And a study led by Washington University in St. Louis will test three drugs on people with a genetic mutation that virtually guarantees they will get Alzheimer's before age 60.

Scientists hope they will learn, among other things, whether amyloid plaque is a trigger or a byproduct of the disease.

"If the treatment has the effect on memory and thinking that is hoped, it could lead to (Food and Drug Administration) approval," said Eric Reiman, executive director of the Banner Alzheimer's Institute.

"It would also support the idea that this and other amyloid treatments will have a role in prevention."

Fading light

Valletta is one of more than 16,000 who have signed up for the registry. She knows how helpless the disease makes people feel.

Valletta's mother, Belcher, began to forget simple things when she reached her late 50s. She missed routine appointments. Her glowing job reviews as a quality-assurance manager of health services for the state's prison system dimmed. She retired in 2006.

At home, Belcher reached for Cheetos instead of bread crumbs when cooking her signature meatloaf. She forgot the route to one of her granddaughter's schools.

As a Christmas gift to Belcher several years ago, an in-law downloaded a series of family photos to a digital picture frame. As Valletta scrolled through the photos, she noticed something unmistakable.

"You can see when the light left her eyes," Valletta said. "I am looking at the photos and seeing her smile and interact. Then, over a period of one year, she became expressionless. The light was gone."

Belcher was diagnosed with Alzheimer's disease in early 2010. She moved in with Valletta and her husband, but when the care requirements became too much to handle, she was transferred to a memory-care clinic in Chandler.

Valletta realized she had become a stranger to her mother when the two were watching the TV game-show "Jeopardy!" a few years ago. Belcher asked Valletta who she was, then turned toward the television.

"What was Argon and Xenon, Alex?" Belcher said, giving the game-show host the correct question to an obscure answer.

Valletta recently snuggled up with her 7-year-old daughter, Alexandra, on a backyard bench swing at her Phoenix home. She asked her daughter whether she knows about Grandma's disease.

Alexandra nuzzled her head into Valletta's arms and nodded.

One year ago, Belcher would protest when asked questions during memory tests. That fight and vigor disappeared.

Her words were no longer intelligible. She lost nearly 70 pounds since May. After facing the final stages of Alzheimer's, Belcher passed away Tuesday with Valletta and other family members at her side.

During a recent trip to Lake Powell, Valletta retreated to the back deck of her boat under the stars. Her mother loved water and boats. Valletta took out her iPad and began to type her thoughts.

"I have been trying to put in perspective my mom's life and her death," Valletta wrote. "I think she was a bit of a rebel. ... I think she worked hard. She always meant well, with love in her heart."

Ken Alltucker, The Arizona Republic

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