Alzheimer’s Testing: Are We Ready for the Test Anxiety?
Reading about the new guidelines for Alzheimer’s early detection immediately made me think of the anxiety wrapped around (and up in) testing for HIV. Knowledge may equal power, but it doesn’t always feel that way for the patient.
According to an article in The New York Times, early detection for Alzheimer’s “would mean that new technology like brain scans would be used to detect the disease even before there are evident memory problems or other symptoms.”
The article goes on: “If the guidelines are adopted in the fall, as expected, some experts predict a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease.”
Journalist Sheryl Kraft, in her “MidLife Matters” blog at HealthyWoman.org, writes a very thought-provoking piece about what she sees as the fallout of such a change.
“Insurance companies would be privy to the results: would they deny coverage to those who have tested positive? Let’s not even mention all the false positives that come with testing.”
What she’s referring to here is all the anxiety that goes with all those positives and those false positives.
This, from GenomeWeb addresses the issue of genetic test anxiety. The piece says, “…it turns out there’s a large pool of patients who are anxious about the stuff they might learn from a genetic test.” And that “some people might be anxious about finding they carry a gene that makes them more likely to develop diseases like Alzheimer’s disease – there’s no cure for it….”
But said anxiety is not exactly a new phenomenon. I mean, ever been a patient? Ever known a patient? Then you understand the fear of “finding out” if a test is positive or negative.
As we move closer to having more tests that can detect Alzheimer’s and other diseases sooner—and before a cure is created—I advocate equal attention be paid to the anxiety produced along the way. Not just lip-service attention, but funding for counseling and support. It’s one thing to study anxiety in a clinical way and discover that (surprise!) people who undergo medical procedures have it. It’s quite another to address these issues, to provide counseling and emotional support.
Among other things, anxiety causes people to isolate and turn inward, to think the worst and lose hope. These are side effects of such testing. That doesn’t mean we don’t test. It does mean, however, that we consider what “knowledge is power” means, in a real-world way.
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