Is Alzheimers in your Future?
Recently discussed in the New York Times was the dilemma of physicians being able to predict Alzheimer’s far in advance without a cure to go along with the new knowledge.
Due to a great leap in technology, many tests for Alzheimer’s and Dementia are available now that were not available only a few years ago. This leaves many physicians in a quandary. When the ability is there to predict a future disease but no available treatment on the horizon–should they tell the patient their test results anyway?
Certainly, there are differing opinions on the subject. Some doctors, like Dr. John C. Morris of Washington University in St. Louis, say they will not offer the new diagnostic tests for Alzheimer’s — like M.R.I.’s and spinal taps — to patients because it is not yet clear how to interpret them. He uses them in research studies but does not tell subjects the results.
Dr. Rafii knows about the new tests and how to use them because he is an investigator in the study of memory disorders clinic at the University of California, San Diego. Dr. Rafii sometimes offers the study’s diagnostic tests: spinal taps and M.R.I.’s to look for shrinkage in important areas of the brain; and generally tells the patient of his findings. Other doctors differ in how far they will go with the information they find.
Dr. Mony J. de Leon of New York University, for example, takes a middle ground. He is studying people at increased risk for Alzheimer’s or other dementias, especially those whose mothers had Alzheimer’s. That sort of family history, he has found, makes the disease more likely.
Dr. de Leon provides people with a sort of general assessment, telling them they are at increased risk, decreased risk or somewhere in the middle, however, he says, “We do not reveal their scores.”
It is not only a dilemma when dealing with Alzheimer’s. Technology has produced many new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms. Yet, not all these diseases have cures or even treatments available at this time.
“This is the price we pay” for the new knowledge, said Dr. Jonathan D. Moreno, a professor of medical ethics and the history and sociology of science at the University of Pennsylvania. There is so much more information available now, yet the doctor must decide how much he will actual tell the patient.
And, how much would the patient want to know if there was no treatment available. Many people want to know anyway. At least they think they want to know. One doctor suggested that telling Alzheimer’s results when the patient will not be affected until some point in the long distant future is “psychologically invasive.”
But for neurologists like Dr. de Leon, the future is fast approaching, as patients increasingly demand to know. “The floodgate is about to open,” Dr. de Leon said.
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For myself, I feel fairly certain it will be in my future. My mother and grandmother both had Alzheimer’s, so why wouldn’t I? But to have a test and definitive answer. No, I don’t want that right now.
What do you think? Would you want to know?
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Cognitive-Communication Disorders of DementiaMore infoBottom Line’s Power AgingMore infoAlzheimer’s Disease: The Memory CrisisMore infoDSS Understanding Alzheimer’s ChartMore info
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Have you taken the Sage Test to learn how you’re thinking abilities are doing?
Ellen Woodward Potts says
09/14 at 8:47 pmThe problem with this prediction test, as with all predictions, is that it deals with an uncertain future. I had a grandparent on each side with Alzheimer’s disease, one of whom began showing signs by age 60. I could have the test today and get a prediction that I will get Alzheimer’s at some point in the future. However, I also have certain types of cancer that run in my family. I could get cancer in a few years (or die in a car accident, or any other number of ways) and never live long enough to get Alzheimer’s. Knowing my personality, I would spend that entire time worrying about getting Alzheimer’s disease. Also, I could have a test result saying that I was not going to get Alzheimer’s disease, but then could get one of the other equally horrific forms of dementia. Again, knowing my personality, I would be so relieved to hear that I was not going to have Alzheimer’s that I would not prepare for the possibility of cognitive impairment of some other variety.
The Alzheimer’s test is viewed as a “sure” prediction, but nothing is sure about this life. I prefer to view my risk by the numbers. Most people in my family (at least those who don’t die of cancer or get early onset Alzheimer’s disease) live well into their 90’s, some past 100. At age 85, 47% of people have Alzheimer’s disease. That does not include dementia from stroke (also runs in my family) or some other cause. Given the longevity in my family, I had better prepare for cognitive impairment of some kind. Then again, EVERYONE should prepare for cognitive impairment of some kind, because it can happen at any time and at any age. In our dementia daycare center, we have had clients from age 29 to age 102. Only 50 – 60% of these people have Alzheimer’s disease.
michaela ward says
12/19 at 4:12 pmYes, I want to know. Seeing my mother dying of this horrible disease and other family members. I want to be able to make the decision to end my own life before I get to the stage where I would be a burden to my family.