September 13, 2017
A diagnosis of Alzheimer’s is as frustrating as it is heartbreaking. By the time a patient is diagnosed, there is little that can be done to delay the disease. Now, a new proposal by a committee convened by the National Institute on Aging and the Alzheimer’s Association is underway to change how and when an Alzheimer’s diagnosis is made.
Alzheimer’s has typically been diagnosed almost entirely based on symptoms and cognitive testing. Identifying the beta-amyloid plaques and clumps of the protein tau that characterize Alzheimer’s was something that was only done during an autopsy. Recently, though, Alzheimer’s testing that pinpoints the physiological changes in the brain has been used more frequently, though it’s still expensive and not covered by insurance for most patients. This proposal would require that participants of Alzheimer’s studies undergo brain imaging and measurement of substances in cerebrospinal fluid to receive an Alzheimer’s diagnosis and participate in Alzheimer’s studies. Eventually, a diagnosis based on biology rather than cognitive tests and symptoms could trickle down to how the general population receives an Alzheimer’s diagnosis.
Researchers have told Being Patient that we’re starting to understand memory loss as only a small component of dementia. It’s often the thing that gets a patient into a doctor’s office because it’s the most disturbing change, but research shows that changes in the brain that characterize Alzheimer’s can start 20 or 30 years before someone develops the most noticeable symptoms.
A change in the approach to diagnosis would put Alzheimer’s in line with how heart disease and cancer is diagnosed—by analyzing artery build-up and detecting the presence of malignant cells, not monitoring symptoms after the disease has already progressed. Considering most patients receive an Alzheimer’s diagnosis when the disease has already begun to interrupt their lives and spread throughout their brain, this approach could buy many patients more time to plan for the disease or allow them to enter clinical trials that could have significant impact both on their lives and our understanding of the progression of the disease. However, it could come at a cost: What is the psychological effect of telling someone without symptoms that they have the disease?
The report comes after a study earlier this year identified 60 percent of patients with an incorrect Alzheimer’s diagnosis after analyzing brain scans.
Read the full write-up in the Wall Street Journal here.