Published on: December 4, 2016
by Women’s Brain Health Initiative:
If given the option of knowing or not knowing you are at risk for Alzheimer’s, what would you choose?
My answer: I’m not sure if I would. I’m an obsessive problem solver. Give me an issue and I’ll come up with a barrage of solutions. But if there is no solution, no cure, do I really want to know?
I surveyed many of my friends about whether they would want to know if testing proved that they were at a higher risk for cognitive decline, and the overall consensus was – no – don’t tell me. The common sentiment seemed to be what’s the point of knowing, if nothing can be done?
It seems my friends are not alone. I recently had the good fortune to hear Dr. A.M. Clarfield, MD, FRCPC deliver a talk titled “Screening for Cognitive Decline – A Double-edged Sword?”
There is a very specific difference between testing and screening.
Dr. Clarfield pointed out some very interesting issues. To start, there is a very specific difference between testing and screening. Although the World Health Organization sets out a comprehensive matrix that defines the criteria for screening, in essence, if you have no complaints you are being screened for risk factors. If you have symptoms, you are being tested as to whether you are already showing signs of the disease, how far the disease has progressed and you are receiving a diagnosis.
When it comes to cognition, there are problems with effective screening. For instance, since life expectancy is increasing, if you exhibit risk factors you are then labeled as having the disease and all that appears to have been accomplished is increasing the length of time for which you ‘have’ an untreatable disease.
And once you’ve been diagnosed, it is difficult to ignore that you have IT! Along with IT, comes some thought-provoking issues.
What are the legal implications? Will an Alzheimer’s diagnosis mean that you will not be able to obtain long-term disability or travel insurance?
Will it lead to depression? Begin a diagnostic spiral of anxiety? Result in labeling which in turn will make you ill?
How much time would it take our primary doctors, usually family practitioners, to deal with prevention? A US study estimated it would take 7.5 hours per day for doctors to deal with issues arising from these screening processes.
And of course, we would then have to be very cautious of the opportunity costs. What could we do with the money used for screening in this age of limited medical resources? How would we keep the disease promoters at bay – those who sell sickness and are ready to grow a market for those to sell and deliver treatments?
For those in favour of the screening/knowing question, the arguments include having time to plan, exercising one’s right to know, preparing your children and loved ones, and, most importantly, contributing to research. For me, only the last point would be incentive to know.
If I already had a positive diagnosis for cognitive impairment, being part of a clinical trial that might help others would make me feel that I was still useful.
Clarfield shared the recommendations of a number of professional groups on the screening issue. The American Geriatrics Society and the Medicare Annual Wellness Visits, Department of Health and Human Services (US) advocated for evaluation and screening for cognitive ability and functional status.
The American Academy of Neurology stated “insufficient data to make any recommendations regarding cognitive screening of asymptomatic individuals and sufficient data to recommend the evaluation and clinical monitoring of a person with MCI due to their increased risk for developing dementia” (Peterson et al. Neurology 2001).
When surveyed about guidelines for screening, Canada, the US, Britain and Israel all agreed that there was insufficient evidence to proceed with screening programs for cognition and that prevention is more important than screening.
Clarfield concluded his presentation with the following: “All screening programmes do harm; some (can) do good as well” (J A Muir Gray, 1997).
That being said, it is quite likely that there will continue to be indecision out there when it comes to testing and screening and choosing to know and not know. My hope is that our increased efforts for research and prevention will pay off so that the fear of the unknown is resolved, and with that taken out of the equation, the question will become less relevant.
Source: MIND OVER MATTER
On Mother’s Day, amazing support for women’s brain health and our initiative from Robin Wright, Diane Lane, Trudie Styler, Teddy Sears, Martha Stewart, Tonya Lewis Lee, Marcia Gay Harden, Donna Karan, and Cecile Richards.
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