“I pulled to the side of the road and sat, terrified. After finishing a few simple errands, I didn’t know how to get home.” Maybe I have Alzheimer’s, my friend confided.
I could identify with the problem and the fear—I’ll run into a neighbor of more than 20 years at Wegmans, but her name eludes me and I cover with a hearty, “Hey, how are you?” Or I’ll relate a recent event to my wife and blank on the name of a common object.
My friend saw a neurologist who told him that his forgetfulness was age-appropriate—he’s over 80. But how do you know? Not long ago, the only reliable diagnosis of Alzheimer’s was an autopsy. Given THAT choice, I’ll stick with ignorance.
Only recently has progress been made on the use of PET scans and spinal taps to confirm an Alzheimer’s diagnosis. The existing tests have significant disadvantages, however. The amyloid PET scan is costly and may not be covered by insurance; the spinal tap is invasive.
Our occasional word-finding problems prompted my wife and me to sign up for an ongoing National Institute of Aging Alzheimer’s study. The University of Rochester Medical Center is a participant. The investigators are seeking healthy volunteers ages 50 to 85. The burden of participation is low: Most participants simply take an online test of cognition and memory once per quarter. Enrollment and the “baseline” test took about 20 minutes.
To learn more, I connected with Anton Portsteinsson M.D., director of the University of Rochester Alzheimer’s Disease Care, Research and Education Program. He came to UR for his residency after completing medical school in his native Iceland. (He quips that he’s the only UR recruit who moved to Rochester seeking better weather!) He spoke to me from Iceland, where he was visiting family.
As Portsteinsson explained, it is challenging to study the prevention of Alzheimer’s because it is difficult to diagnose the disease in its early stages. He also discussed how difficult it is to recruit study subjects, both healthy and those with apparent memory impairment, which can be an obstacle to research. This, then, is the primary goal of the study, to serve as a “funnel” for future clinical trials. They’ve signed up 34,000 already and hope to reach 200,000 participants.
Individuals enrolled in the study get access to a research-based assessment of cognitive function, repeated quarterly. If the assessment begins to show impairment, they may be invited to participate in further evaluation or to join a clinical trial. Enrollees have complete access to the assessment results. That certainly appealed to my wife and me.
The quarterly evaluation has two parts. The Cognitive Function Index is a series of 14 questions that probe the individual’s subjective assessment of their cognitive state. My friend would answer “yes” to “Do you have more trouble driving (do you tend to get lost?).” We would both agree with “Do you have more trouble recalling names, finding the right word, or completing sentences?” Both questions are included in the list of 14. The CFI sometimes requires a “study partner” who is asked to answer the questions on behalf of the subject. Currently, the CFI used for the Alzheimer’s Prevention Trials Webstudy does not require a partner, however.
The second part is a short test battery using images of playing cards to assess short-term memory. The tests are developed by Cogstate, a firm specializing in tools measuring brain health.
The study also asks a few simple baseline questions about your medical history and personal characteristics. Portsteinsson notes that this questionnaire will be more extensive if you are invited to get more involved in Alzheimer’s research.
The Alzheimer’s research community is also talking about two recent developments. I was particularly intrigued by the announcement of a blood test for Alzheimer’s. Results of research at the University of California-San Francisco were published in Nature Medicine in March. A related article was just published in the July issue of the Journal of the American Medical Association (and reported on by the New York Times). The test measures “the concentration of ptau181—a modified version of tau that’s been linked to Alzheimer’s disease—in blood plasma, the liquid part of blood. Their analysis showed that the ptau181 in plasma differed between healthy participants and those with Alzheimer’s pathology confirmed in autopsies.
Also encouraging is a report from the Alzheimer Cohorts Consortium that the incidence of Alzheimer’s fell 13 percent per decade in the United States and Europe from 1988 to 2015. Published in a recent issue of Neurology, the consortium reported on a pooled estimate derived the combined results of seven separate studies including nearly 50,000 participants.
Why the decline? The authors note “that there have been many concurrent changes over time in possible key risk factors, including lifestyle education and health interventions such as blood pressure control and antithrombotic medication. While none of these has been specifically intended to halt cognitive decline, decades of cardiovascular risk management have likely had substantial effects on brain health, supported by reduction of small-vessel disease on brain imaging in more recent years.” As one of the millions of Americans taking a statin, I can hope that some protection from Alzheimer’s has come along in the bargain.
The Alzheimer’s Association estimates that 410,000 New Yorkers suffer from this terrible disease. As the population is aging, this total is expected to grow 12 percent by 2025. Caregivers provided more than a million hours of unpaid support to sufferers in 2019. Medicaid is expected to spend $5.4 billion on care this year. Nationwide, the annual cost of dementia is estimated at $290 billion.
Dollars and cents don’t capture the human tragedy of this terrible disease. My father suffered from Parkinson’s dementia during the last five or six years of his life—it was very hard to witness the gradual disappearance of this gracious, intelligent man.
Sign up for the study—you’ll gain of peace of mind through a regular assessment of your mental state and, if your condition warrants, access to new clinical trials. The personal benefit aside, you’ll be helping learn more about a serious and growing health condition.
Kent Gardner is Rochester Beacon opinion editor.