Medical researchers have made great strides in understanding Alzheimer”™s disease, but for lack of participants in clinical trials they are falling short of breakthrough treatments for the fearsome affliction.
“This is the disease of our time,” said Karen Bell, a professor of neurology at Columbia University Medical Center. “A giant wave of baby boomers has aged into the population at risk for this disease.”
“We cannot rely on current medications,” she said. “We have to do something to stamp out this illness.”
Bell is a nationally recognized researcher at the Taub Institute for Research on Alzheimer”™s Disease and the Aging Brain, and at the Gertrude H. Sergievsky Center at Columbia. She also maintains a clinical practice at ColumbiaDoctors Tarrytown.
Today, 5.3 million Americans live with Alzheimer”™s disease, the most common form of dementia. Most are 65 or older, and nearly two-thirds are women.
It has no known cure. Current treatments cannot stop its progression, but some medicines can temporarily slow the rate of decline and help people hang on to basic activities longer, Bell said.
“This problem can be solved,” she said. “We have a learned a lot about Alzheimer”™s disease over the past few decades. Now we can look for markers associated with the illness before you ever have symptoms.”
Researchers are studying two abnormal structures that are suspected of killing or damaging nerve cells in the brain. Beta-amyloid plaques build up in the spaces between nerve cells. Twisted fibers called tau build up inside the cells. Experts believe these proteins block communication among nerve cells and disrupt the processes that cells need to survive, according to the Alzheimer”™s Association.
Researchers use experimental medications to attack the structures to test whether the compounds can stop the proteins from building up.
Some of the clinical trials use patients who already have mild symptoms or have a family history of Alzheimer”™s but do not yet have the disease. In these studies, researchers are looking for medications that stop the progression of cognitive problems.
Some clinical trials focus on people who have chemical markers but no symptoms. These trials look for medications that will stop the disease from developing in the first place.
Each trial needs several hundred patients, and a couple of dozen trials are running at any given time.
“The only thing holding us back from success is finding enough patients to enroll in clinical trials,” Bell said.
Acceptance of cognitive decline is one reason it is hard to find volunteers.
“People think problems with memory are a normal part of getting older,” Bell said. “If you have a problem with memory, something is wrong. It”™s not a part of successful aging. You can be 98 and not have any problem with memory.”
She said people who have markers for the disease, a family history of Alzheimer”™s or mild symptoms ought to consider enrolling in a clinical trial. The trials are free. Patients continue to take their standard medications. There is even an intangible benefit: a study has shown that people who participate in clinical trials fare better than those who don”™t, for reasons that are unclear.
Volunteers often see clinical trials as a chance to change their destiny.
“You don”™t lose anything by participating,” she said. “If you do nothing, you know what the likely outcome will be.”
The trials run for several years, so they require a commitment.
People with a high tolerance for risk might choose one that is studying the latest drug that everyone is talking about. Those with a low risk tolerance might choose one that is testing a medicine that has already been approved for another disease.
Bell recommended a few websites for people who want to know more about Alzheimer”™s and clinical trials: the Alzheimer”™s Disease Education and Referral Center, Alzheimer”™s Association, Alzheimer”™s Disease Cooperative Study and ClinicalTrials.gov.
“This is a condition we can find an answer for,” she said, “if enough people participate.”
