April 14, 2021 | The Philadelphia Inquirer
Dementia, Alzheimer’s have reached crisis point, Penn researcher says. Here’s what we can do about it.
Mild cognitive impairment, dementia, and Alzheimer’s now affect so many people — those with symptoms, plus their caretakers — that Jason Karlawish, of the Penn Memory Center, terms it a crisis.
Dr. Jason Karlawish, professor of medicine, medical ethics and health policy and neurology at the University of Pennsylvania, explores this and more in his new book, The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.
Question: We now have drugs for Alzheimer’s patients. And you say that one day, a person will be able to be tested, diagnosed and treated for Alzheimer’s before any symptoms begin. You say this presents not only promise, but also a profound moral challenge. How so?
We don’t have drugs that slow the disease. We have drugs that treat the symptoms, at best. But some day, perhaps soon, we will have pharmacologic treatments that slow the progression of the disease. That’s incredibly promising. It would delay the time before people have disabling cognitive problems. That’s all good.
The challenges, though, are that, first of all, the earlier you prescribe such drugs, the more you’re labeling people. You risk that all the stigmas and worries attached to the Alzheimer’s label are now attached to people who are otherwise functional. They can suffer discrimination. For instance, how would an employer react to knowing that an employee was being treated? They are not impaired. But they’re at risk of being impaired. I often think of one patient with MCI who, after being told she had Alzheimer’s disease, suffered crippling anxiety.
The other side is that over time, despite treatment, people will get sicker. It happens. We see that with other diseases. In those situations, how would a person decide, “I no longer want to get treatment.” Of course, they have that right. It’s a fundamental, ethical right. But what do we do next? What kind of care should a person receive? That’s a huge question.
This doesn’t mean I don’t think it’s good to diagnose and treat the disease early. Why would you wait until someone has disabling impairments? But these treatments will only slow, not halt or arrest the disease.