Why diagnosing Alzheimer’s, while painful, has value

A couple of generations back, two women in my family “lost their minds.” One started wandering in her 60s, the other became obsessed with dolls in her late teens. The wanderer died at home in 1945, and best I can now tell, the regressing teenager died in a sanitarium about the same year.

As a boy, I vaguely recall an occasional impolite question about one or the other woman. The answer was always delivered with a lowered voice: She lost her mind. That was it, end of conversation — she just lost her mind. Just as when it sometimes happened to other folks in town, maybe from bad well water, from poisoning, perhaps spite or sin. Yet a few hard details of these two women sometimes appeared when least expected, like Easter eggs in the summer weeds.

It was the dickens to keep her out of the fire. She lost her hair. The sanitarium was somewhere in Alabama.

The last years of these two women were shrouded in whispers. Their lives were lost in the weeds.

I first learned of Alzheimer’s disease in medical school in the 1970s. Given her age, Henrietta most likely had that disease. Ruth, who died young and suffered seizures, probably had something else. For a long time I have caught myself at scattered moments trying to guess at a correct diagnosis for each woman’s neurological problems.

A correct diagnosis helps, I think, even when it comes too late or seems to change nothing.

In the picture on my dining room wall, an anxious Henrietta stands in a Victorian gown, hand resting on the shoulder of her husband, Samuel. Henrietta, even in midlife, looks like she needs help.

Not so long ago, I recognized Henrietta’s eyes on a movie screen: In the film “Still Alice,” for which Julianne Moore won an Oscar for her portrayal of a woman determined to find the correct diagnosis for her memory problems. The diagnostic process was not an easy one, but Alice was determined not to be lost in the weeds.

“I know what a PET scan is,” she insists, zeroing in on her doctor. “What in particular are you looking for?”

Amyloid, I told myself, the doctor is looking for an increased level of the protein beta-amyloid in her brain. A person with Alzheimer’s must have an increased level of brain amyloid. No amyloid, no Alzheimer’s — so goes the science. In the film, as the doctor explained it, Alice paled as if she understood too well the science.

Here’s where the present-day quandary begins. Ever since the Food and Drug Administration approved the first amyloid-imaging PET scan drug in 2012, a question — does the PET scan actually help? — has created more chatter in the neurology world than a gossipy town full of sinners.

Whether the amyloid-imaging PET scan can help is not an impolite question. The scan is expensive and, like most tests, can result in errors. But the real concern, as many health-care experts have put it, is that the scan only truly helps if it allows a patient to live longer or to live better, either directly or indirectly, by leading to a change in how a patient’s care is managed. Because studies have yet to show that the PET scan improves health outcomes, many insist the scan is not helpful.

In effect, a correct diagnosis is not enough.

Expecting a test to do more than it was ever intended to do — to help make a correct diagnosis — is a curious logic. It’s a lot like insisting that a map is helpful only if we use it to go to a good place. That we might use a map instead to go to a correct place doesn’t matter. Correctness is irrelevant. The place where we arrive must be good; otherwise, the map is not helpful. It’s the kind of logic that comes out of being so desperate for a cure or new treatment that we overlook the value of a correct diagnosis. It’s also the kind of logic that can leave a person without any map at all and lost in the weeds.

So, back to Alice, or, rather, to the many real people like her: Do amyloid-imaging PET scans help them?

Let’s just say that a correct diagnosis should at least keep their children from hearing only that their parent lost his or her mind. And when it comes to my family — to Henrietta and Ruth — a correct diagnosis even now would put all that talk of the town in my mind to rest.

Dwaine Rieves retired in 2013 as director of the Food and Drug Administration’s Division of Medical Imaging Products, where he was part of a team that reviewed clinical data on amyloid-imaging PET scans.

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