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Published on: January 26, 2013
by Tom Kisken for Venture County Star:
Kathryn Becker wants to know if, like her mother, she won’t recognize her own daughter one day.
The retired Navy engineer who taught herself two programming languages decided to undergo tests that may reveal her future. She went through a spinal tap and brain imaging that revealed biological components that may cause Alzheimer’s disease. The early diagnosis means the memory loss that makes it hard for Becker to use an ATM or find the right kitchen drawer for a spatula will likely evolve into full-blown Alzheimer’s. But it’s not a guarantee of that end result and brings no medicine proven to stop the progression, much less cure, a disease that affects 5.4 million Americans.
Doctors and scientists argue over when the diagnosis should be given and to whom. Officials of the National Institute on Aging say the uncertainty of the disease’s evolution means the earliest preclinical findings should only come into play during clinical trials for drugs aimed at treating Alzheimer’s before it emerges.
The chances of preclinical stages becoming full-blown Alzheimer’s increase if people already suffer memory loss or other cognitive lapses. But some scientists contend people with no symptoms shouldn’t be told of the preclinical findings, even if tests are positive.
“It doesn’t mean they’re going to get Alzheimer’s. It means they’re probably at a higher risk,” said Dr. Creighton Phelps, director of the Alzheimer’s Disease Centers Program at the National Institute on Aging. “You can’t tell them what to do with the information because we can’t be sure of what it means.”
The diagnosis may seem like a guillotine, appearing a little more real each time a person loses the car keys. But for Becker, 66, of Camarillo, it is a foothold that helps her face and scale the future.
Her memory started to fade after she was diagnosed with stage-four colon cancer nine years ago. She thought the gaps could be linked to the medicine used to treat her cancer during two years of chemotherapy. Doctors performed tests but could not pinpoint a cause.
Last year, a neurologist told her she could be on the path to Alzheimer’s, the same disease that ate away at her mother’s memory. Ruth Burkhart died in a board-and-care facility at age 92.
“I don’t know that she knew me,” Becker remembered. “After some time, it was a blank look. There is no life, no enjoyment. You just exist. I don’t want to live like that. ”
She went through the tests for a precursor stage of Alzheimer’s because it was a way to participate in a clinical trial for an experimental drug called BIIB037. Doctors told her that because she’s already showing symptoms of cognitive loss, the positive test results mean her chances of full-blown Alzheimer’s are high.
Every month, she goes to a neurologist’s office, where drugs are infused into her blood. They may be placebos, but Becker doesn’t think so. She’s been cancer-free for six years because of medical treatment. She believes in cures.
“By knowing what the problem is, there’s more of a chance to find a cure,” said Becker, who shares her home with her daughter, her son-in-law and their two children. “I think very positively and think that something is going to happen for me. If it doesn’t, I look for something else.”
Of plaque and tangles
In the early stage testing, neurologists use spinal taps and brain imaging to hunt for the presence of proteins called tau as well as fragments called beta amyloid. The biomarkers cause plaque and tangled clusters that are always found in Alzheimer’s patients, although scientists don’t fully understand the connection.
Neurologists combine the procedures with cognitive tests and MRI scans designed to detect shrinking in the part of the brain that forms, organizes and stores memories.
If people already show significant memory loss, the tests can suggest they will likely develop full Alzheimer’s. But the value of using the preclinical findings to predict the progression toward the disease for people who show few symptoms is uncertain. Some people diagnosed with the preclinical condition never develop full Alzheimer’s.
“They are perhaps at a higher risk, but they’re not definitely going in this direction,” Phelps said. “Thirty percent of the people who die of old age have amyloid in the brain but have no symptoms of Alzheimer’s.”
Genetic tests can also indicate elevated risks. The growing need for testing is driven by the failure of medications designed to attack Alzheimer’s in its fully formed stage. Now, drugs are being tested in clinical trials to assess their effectiveness earlier.
“We have been treating the disease too late,” said Ken Kosik, an Alzheimer’s researcher at UC Santa Barbara. “The idea is that if we’re going to find a cure, we have to start early, before the disease starts.”
Many of the trials require participants to have some cognitive damage, usually memory loss, but not Alzheimer’s yet. It means Dr. James Sutton, an Oxnard neurologist participating in two clinical trials, tells people they may be headed toward dementia and there’s little that current medicine can do about it.
“I’m diagnosing people with preclinical Alzheimer’s and leaving them to fend for themselves,” he said.
Coping with risk
Sutton formed a support group he calls Stage Zero to help people cope. In its first meeting, the conversation pingponged around a table. People explained why they want to know if Alzheimer’s awaits them.
“Knowledge is power,” said a woman whose mother is diagnosed with full-blown Alzheimer’s.
“I’ve been troubleshooting all my life. It works in everything,” said a retired electronics engineer, acknowledging he may get an answer about the future he does not want to hear. “Sometimes you say there is no solution.”
The conversation continued after the meeting. The engineer wants to make plans to live in a senior community with skilled care so his wife won’t be burdened if he develops Alzheimer’s. He asked that his name not be used because of fear that his risk of Alzheimer’s means he won’t be able to get insurance coverage.
It is a common concern. Federal health care reform prohibits health insurers from denying coverage because of pre-existing conditions. But that law does not apply to long-term-care policies that cover stays in nursing homes and other facilities.
There are other worries. An Oxnard man in his 50s sat through an early morning interview in his pajama bottoms because he forgot a reporter was going to visit. He wants the testing because he wants to make the most of the time he has left.
“What I really want from this is data: where I’m at and where I’m going and how fast,” he said.
He, too, asked that his name not be used. Contending his memory lapses already cost him one job, he worried that news of his testing would scare away possible employers.
“It’s like we’re opening up a Pandora’s box,” said neurologist Sutton, citing the National Institute on Aging’s recommendation that the earliest preclinical findings only be given in clinical trials. “But we’re only opening it up a little way.”
Phelps contended people with significant memory loss or symptoms of cognitive brain damage should know if Alzheimer’s may lurk in their future. But testing people with no symptoms represents an ethical land mine.
Several neurologists said they will perform the imaging procedures and genetic tests for patients who have reason to think Alzheimer’s lies ahead but will also make sure people know the answers they gain may not be complete or absolute.
“I would want the person to have a good reason,” said Kosik, the UCSB neurologist. “I’ve done it because families wanted some sort of certainty so they can try to consider their future with a full deck of cards. They get the certainty that this looms ahead of them with greater likelihood than some other people.”
But the doctors end up asking themselves the same question: Would they want to know?
Kosik won’t answer, saying the scenario has too many nuances for an easy response. Sutton’s answer is no. He knows his future may hold Alzheimer’s or other health risks. He’s not ready to face it until it happens.
“I don’t want to believe that anything’s ever going to happen to me,” he said. “I have an irrational optimism in the future.”
Trying to prepare
Teresa Valko’s memory works just fine. The 46-year-old stay-at-home mom from Newbury Park has no signs of Alzheimer’s. But her mother was diagnosed with the disease two years ago. Her aunt has it, too. She said her uncle died of it.
Valko wants to go through testing for a gene called ApoE4 that was found in her mother and is believed to be linked to Alzheimer’s. A positive result would not mean she’ll develop Alzheimer’s. It would mean her risk is higher.
“I think it’s a prudent decision for preparing,” said Valko, who is also considering a spinal tap, brain imaging and other tests. “I want to be financially prepared. I want to have my family prepared.”
Already convinced she’s fated for the disease, she sees the testing as affirmation. It may be a way to participate in clinical trials that may not produce results in time to help her but could protect her children.
She thinks knowing will help, even if the knowledge carries caveats and more uncertainty.
“I think knowledge abates fear,” she said.
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