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Who Needs Alzheimer’s Testing?

In collaboration with Novartis, the pharmaceutical company, the Alzheimer’s Foundation of America holds a “memory-screening day” each November. Many community groups now offer tests for memory problems. Some doctors already routinely test people over 65, usually with questionnaires (“name as many animals as you can think of in one minute,” and so on). There are also tests to help you diagnose yourself. People have a wide range of memory problems, not all of them leading to Alzheimer’s, and tests may detect some of them.

The drum is beating in the media and among some researchers for universal screening, beginning as early as age 50. Would you—and the world you live in—be better off if Alzheimer’s could be diagnosed early, and if you and your relatives were tested?

This is a subject of deep and continuing controversy. The U.S. Preventive Services Task Force, which evaluates screening tests, says there is not sufficient evidence that the tests are accurate or beneficial. Others insist it is time to begin widespread testing.

Some arguments made for universal screening:

• An early diagnosis of Alzheimer’s or another type of dementia allows the family and patient to prepare financially and emotionally. While still competent, the patient can make a will and other legal arrangements.

• As the disease progresses, the patient can be urged to give up driving, cooking, traveling alone, and other potentially dangerous activities.

• Medications can be administered. There are five FDA-approved drugs. They neither prevent nor cure dementia, but in some people they produce temporary slowing of mental decline.

• Public awareness would increase, which might lead to an upsurge in research spending.

• If we develop reliable tests now, we’ll be ahead of the curve when we do have good treatments.

• Screening may uncover dementias with other causes, such as certain thyroid problems, depression, or vitamin B12 deficiency, which can be treated.

On the “con” side:

• Universal screening would include many people with no memory problems at all. Apart from the waste of time and money, testing can lead to worry, depression, and family disruption.

• There’s no sure way to differentiate between mild age-related cognitive impairment, which may never get worse, and early Alzheimer’s. If the test tells you that you’re okay now but may develop dementia later, what can you do with that information?

• Diagnostic tests for early dementia are not reliable, especially in people under 70. Misdiagnoses could be devastating. People might lose their jobs, driver’s license, or even their potential caregivers, and be unable to get medical or life insurance.

• Alzheimer’s medications are expensive, and their benefits are very limited and of short duration. They are prescribed only for people who are already exhibiting clear signs of dementia.

• Early diagnosis would benefit the drug companies more than the public, according to some critics. And for some researchers and doctors, there’s money to be made from devising and administering the tests.

Where we stand now

Alzheimer’s may be the diagnosis people dread most. Estimates vary dramatically, but some experts say that 3 to 4 million Americans have some form of dementia. The Alzheimer’s Association puts the number at 5 million for Alzheimer’s alone. One thing is certain: the risk rises with age, and the numbers are increasing—a tragedy for patients and their families and a potential disaster for health-care systems everywhere. We urgently need a clear understanding of this disease and better diagnostic tools. We need preventive measures, as well as effective treatments.

Universal screening for Alzheimer’s is sometimes compared by its advocates to testing for high blood cholesterol or for colon cancer, but the differences are stark. Cholesterol testing is cheap, easy, accurate, and of proven usefulness in preventing heart attacks. A colonoscopy can actually prevent or even cure colon cancer. An article in the Journal of the American Medical Association last November agreed strongly that further research into Alzheimer’s testing is necessary before burdening patients and their already overtaxed primary-care physicians with screening tests of dubious reliability and unproven benefits.

Bottom line: If you fear that you or a family member may be showing signs of severe memory loss or Alzheimer’s, discuss the problem with your doctor. If testing reveals no problem, you’ll be relieved. If you do get a diagnosis of dementia, you can prepare for the future to the best of your ability and, if advised, try the medications that exist. We caution against tests at community centers and the like, or self-tests.

UC Berkeley Wellness Letter, April 2008