The Curse of an Alzheimer’s Diagnosis

Alzheimer’s is the most feared disease of the aging population. Though early diagnosis will be necessary to develop working treatments, receiving an early diagnosis when there is no cure could make situations worse for those who are still functioning normally. Does the following story relate to you?

The Curse of a Diagnosis
Is Early Detection Useful If a Disease Has No Cure? An Alzheimer’s Dilemma

If you were in the early stages of Alzheimer’s disease, would you want to know?

That question will haunt a growing number of people and their families as scientists devise more ways to diagnose the degenerative brain disease before it causes severe symptoms, but still can’t prevent or cure it.

Linda Dangaard underwent a spinal-tap test last year confirming suspicions of early Alzheimer’s disease at age 56. Allowing his wife to be tested “was the biggest mistake of my life,” says Colin Dangaard, age 70. Even though she is still functional and vibrant and works in the family’s Malibu saddle-importing business, the diagnosis cost her her driver’s license, many of her friends and much of her self esteem, her husband says. “Her golden years were ripped out from under her by a diagnosis that I think is cruel, because there’s nothing anybody can do about it.”

“It feels like a bomb has gone off in my life,” says Mrs. Dangaard, who concedes that she sometimes gets confused and repeats herself. “I also ask myself, ‘Why me?’ I eat right. I exercise. No one else in my family has this.”

Traditionally, the only way to confirm Alzheimer’s was with an autopsy, when the disease’s characteristic plaques and tangles are found in a patient’s brain. Before that, doctors diagnose it on the basis of symptoms, once they rule out other explanations. But experts say the plaques and tangles start forming 10 to 20 years before symptoms appear.

New tests are emerging that can detect those early brain changes, and more are on the horizon. Last month, the Food and Drug Administration approved a radioactive dye, Amyvid, that makes brain plaque visible on a PET scan. It is expected to be available this summer.

The spinal-tap test that Mrs. Dangaard had measures changes in the cerebrospinal fluid associated with the brain plaques and tangles. It has been available for several years, but used mainly in research settings.

Continue reading from wsj.com…

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