Scientists want to diagnose Alzheimer’s sooner. So what?

Alzheimer’s is what I like to call a black hole disease.

We don’t know what cures it. We don’t know what causes it.  We don’t even know for sure when we have it. The only thing we do know for certain is that you don’t want to get it.

The pharmaceutical industry has spent billions of dollars in creating a cure only to come up empty handed. As a result, there’s a growing realization that the Alzheimer’s pathology is much more complex than we initially assumed: there may be not just one single factor that causes it nor a single point in time when we contract it.

So researchers are trying to expand the field.

This month, the University of Minnesota won a $4.3 million grant from the National Institutes of Health to examine data from a long-term study that for the past 20 years has been tracking 16,000 people, including 4,000 in Minnesota, as they progress from middle age to later life. The researchers suspect Alzheimer’s is the product of a long-term combination of physiological factors including diabetes and high blood pressure.

At the same time, Mayo Clinic helped developed new  national diagnostic guidelines that will allow doctors to use advanced imaging technologies to try to detect the disease before there are any evident symptoms. The overall result is that many more people will be diagnosed with the Alzheimer’s earlier in the process. Drug companies can also design therapies that attack the disease sooner.

Dr. Ronald Petersen, an Alzheimer’s researcher at Mayo and chairman of the Alzheimer’s Association’s medical and scientific advisory council, told the New York Times that brain scans “will allow us to be much more definitive.”  If the tests show changes characteristic of Alzheimer’s disease, a doctor can say, “I think you are on the Alzheimer’s road,” he said.

But that’s exactly the problem: What does Alzheimer’s road even look like? Scientists have long theorized that amyloid beta, clumps of deformed protein detected in PET scans, may be the culprit.

But roughly one-third of all elderly adults have such plaques in their brains yet function normally, Sanjay Pimplikar, an associate professor of neuroscience at the Cleveland Clinic, wrote in a recent Op-Ed published in the Times. And 11 clinical trials, recently made public by a group of drug companies, that were aimed at reducing these plaques in Alzheimer’s patients all failed to show cognitive improvement, even when the brains were cleared of plaques.

“At present, one of the leading biomarkers for measuring amyloid plaques in the brain is only 60 percent to 80 percent accurate in diagnosing Alzheimer’s,” said Shawn Lyndon, CEO of Orasi Medical Inc. in St. Louis Park, Minnesota, a startup developing software to help drug companies test Alzheimer’s-fighting therapies.  “How clinically useful is a test that is only 60 [percent] to 80 percent? Also, can these tests help with accurately diagnosing early stages of the disease? That remains to be seen.”

“A valuable biomarker for Alzheimer’s will be able to identify Alzheimer’s prior to significant neurological damage and at a point where new Alzheimer’s drugs can have the greatest benefit,” Lyndon said. “Also, it will be helpful to have a biomarker that can track the severity of the disease to understand if treatments are helping. This will be more important as and when we have more effective drugs for Alzheimer’s disease.”

Without first identifying those biomarkers, experts fear doctors will tell their patients they have early stages of Alzheimer without any means of doing something about it.

“Even if the new recommendations rendered the diagnosis earlier and unassailable, there is no therapeutic avenue to use this information to effectively treat the patient,” Pimplikar wrote. “Many individuals would simply prefer to be spared the emotional trauma of a diagnosis if no treatment exists.”

Sometimes, ignorance is truly bliss.