It’s widely considered the most feared disease in America. If you live to reach age 85, there’s one chance in three you may develop it. But if there were a genetic test that could reveal with a high level of accuracy whether or not this disease was in your future, would you take that test? Would you really want to know – especially because this disease has no known cure?
As you have probably guessed, the disease is Alzheimer’s disease – and the question “Would you want to know your risk” is getting more and more relevant. That’s the conclusion we drew from this article that we discovered last week on the aging-related website NextAvenue. “Would you want to know your risk of Alzheimer’s?” the article asks. “There’s little chance now of finding out, but that may change.” Many researchers around the world are aggressively seeking a reliable genetic test to let people without symptoms know their likelihood of one day experiencing the onset of America’s most dreaded affliction.
Here at AgingOptions we continually emphasize the vital importance of planning for the future. So as we read this article and considered the implications of the questions it asks, we began to wonder how our own planning might be affected if we were certain dementia was going to be part of our future. The NextAvenue article asks it this way. “How much would you want to know about your risk of Alzheimer’s when there is currently no medical treatment? This is not a simple question. Anyone who lives past 85 has a nearly one in three chance of developing Alzheimer’s. But what if you are in your 50s and your father had Alzheimer’s, but you have no symptoms?”
The goal of all this research, according to James Hendrix of the Alzheimer’s Association, is to develop a blood test that will reliably and accurately predict someone’s medical future in the area of dementia. “That’s our dream,” said Hendrix. “Alzheimer’s is a complex multifactorial disease. There will probably be a whole series of tests before we get a definitive diagnosis. The technologies haven’t quite matured.”
But wait a minute, you may be saying. Aren’t there already genetic tests out there that will reveal our risk of Alzheimer’s? Yes, those tests do exist, but because of the uncertainty in their results, the Alzheimer’s Association does not advocate undergoing them, leaving that decision entirely up to the individual. “In the vast majority of cases, a genetic test will not tell you yea or nay to Alzheimer’s, only whether you have an increased risk,” according to Hendrix. “It may give you a range of probabilities.” The most common test, says the NextAvenue article, looks for a gene called APOE4. If you received one APOE4 gene from your parents, you have a heightened Alzheimer’s risk – and if you have two copies of that gene, your risk is increased still more. However – and this is the big “however” – having this gene is not a guarantee you will get Alzheimer’s. (NextAvenue adds that there is a “familial form” of Alzheimer’s which can be detected genetically, but this form only accounts for 5 percent or less of cases, and it usually brings an early onset of symptoms.)
So back to the original question: if there were an accurate test, but no treatment and no cure, would you want to take it? NextAvenue says that surveys have shown the most common answer to be “yes.” Bioethicist Craig Klugman from DePaul University says that “Most people who want to have the testing are interested in doing it because they have a family history [of Alzheimer’s] or have seen a family member or close friend go through this disease.” He added: “They’re living in fear every day. If they lose their keys — most of us think, ‘I lost my keys’ — they think, ‘ls this an early sign?’” The assumption is that a negative test result will bring peace of mind while a positive result will help them to better prepare for whatever the future may hold.
But some experts, including DePaul’s Klugman, aren’t so sure, wondering whether adding a heightened level of fear to life would create unwelcome and pointless stress. The Alzheimer’s Associations James Hendrix puts it this way. “People ask me, ‘Should I get tested?’ I always ask them, ‘What action would you take with that knowledge? What is the strategy you will take to avoid Alzheimer’s later in life?’” In our view, those are great questions.
It does seem ironic to us that so many people refuse to make the lifestyle choices that they should be making, no matter what genetic testing may or may not show. In that sense, as NextAvenue states, “The best result from bad news may be a proactive one.” There is ample and growing evidence that the changes we make today in diet, exercise, social interaction and a whole range of other aspects of life can help forestall the onset of dementia and even slow its advance. We shouldn’t require the fear of Alzheimer’s to motivate us to do what we should have been doing all along. As James Hendrix says, “If at midlife you make lifestyle changes, you may push off Alzheimer’s. The good news is, [the disease] takes you late in life. If we can delay the onset long enough, you’re going to die of something else. That sounds like a cure to me.”
Maybe you don’t face “dementia anxiety,” but what about the cure for retirement anxiety? When it comes to finding peace of mind for your retirement future, we have the answer: an AgingOptions LifePlan. Our observation, gleaned over years of interaction with thousands of seniors and their families, is that a large majority of people face the future with fear because they refuse to prepare. With a LifePlan in place your most important retirement questions will be answered: your assets will be protected, you’ll be able to avoid being forced into institutional care against your wishes, and you’ll escape the pain of becoming a burden to those you love. Your LifePlan combines financial, legal, family, housing and medical plans into one seamless blueprint – your guide to peace of mind in retirement.
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(originally reported at www.nextavenue.com)