Scrolling on-line this morning, I was amazed at the number of do-it-yourself Alzheimer’s tests “available” and I use that word advisedly since it includes a positive implication that may not be true. I decided to try a couple of tests, in part to see how I’d do and in part to feel a tiny bit what Ralph must feel every time we visit the doctor’s office, not only facing his annual test to recalibrate his level of cognitive loss, but when he has to answer the short list of questions his doctor not so subtly slips in during our interim six month check up.
I took the SAGE (Self-Administered Gero-Cognitive Exam), developed by the Ohio State University Wexner Medical Center plus a test developed by the Department of Veterans affairs that Dr. Oz promotes .
A disclaimer–I am not a fan of Dr. Oz. Maybe that’s why I scored only 59% on the Dr. Oz test the first time I took it. Or maybe it’s because I kind of cheated: I didn’t have the stopwatch the test required so I had to guess how many animals I could name in a minute (full disclosure: while writing this, I had to go back to the site-twice- to see just how long I was supposed to have, thirty seconds? Ninety seconds?).
Of course Dr. Oz invited me to take the test again and also to buy some memory aid products. I nixed the products but I did take the test again, raising my score 71%. This time round, I also realized I had not properly memorized the five (or was it four, I can’t remember) items I was supposed to remember. Tie was an item after all. But I still couldn’t, and can’t, remember the last one.
Taking the Sage test was more interesting because I found myself uneasy and unsure how to answer some of the subjective, non-memory introductory questions. Do I have balance problems? Well, I don’t think so, but I am accident prone, having had two sidewalk mishaps in the last three years—once tripping on my shoelace and once slipping on ice—so maybe I’m kidding myself. Have I had changes in my personality? Yes, and yes, also to whether I have “more difficulties doing everyday activities due to thinking problems”. I like to blame those yeses on my anxiety regarding Ralph, but then again…. My palms were sweating before I even started.
As for the SAGE test itself, I got the first 10 out of 11 questions right effortlessly. But on number 11 I did the unthinkable—I didn’t follow the directions! My shape was right but I missed a step, and as I recall from ninth grade Algebra (or was it Geometry?), skipping the step is bad, bad, bad!
So the good news is that while I didn’t exactly ace my exams, I don’t have Alzheimer’s. The bad new is that if I got this tense taking these tests on a whim, what must it feel like for Ralph taking much more complicated, exhausting tests knowing how much is at stake. Sometimes I get so wrapped up in my own anxiety/resentment/struggles that I lose sight of the existential crisis he faces daily, hourly even, every time he grasps to remember and comes up empty handed.
Alice in Memoryland 
I was a caregiver to my husband for 6 years. Yes, I had the all the tests, nobody told me how I did. I knew how I did. When they asked me to remember a list of random words I could maybe only get 3 or 4 correct. Now if I had, had it written? It would have been differen. I can’t even add my golf score. I have never been able to remember names. Yet my friends and family don’t know. Now I am 80 I am sure I would do as badly as I would have at 65 or if they had given me the tests many years ago they would have arranged to have put me into a special class, now it would possibly be special care.
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I’m the “Care-givee” from the prior post, and not a caregiver. But I got a chuckle out of this post and some of the comments about anxiety.
I had my first round of neuropsych tests that resulted in my “MCI, possible AD” diagnosis last summer. My doctors recommended re-testing this summer to look for changes. I find myself thinking/worrying about that more and more as the time draws near. It doesn’t help that I seem to be calling long-time friends by wrong names, and I’ve caught myself struggling to think of simple words for the first time. Am I imagining that these things are happening more often than years ago or am I progressing? Don’t know.
But I do know that, not more than an hour before reading Alice’s latest post, I had decided that I just wouldn’t go back for the re-test. There are no treatments for MCI beyond diet/exercise/lifestyle changes. What difference does it make if I sit for another 6 hours of tests? Of course, one important and immediate difference is that my wife probably would have me sleeping out in the back yard with the dogs if I tried to skip the re-test. But regardless how I do on the re-test, I will progress, or not progress.
When I took the tests last summer, I really was very confident that the results would prove that I was normal and my wife worried way too much. I looked forward to needling her about that when I was done. I can’t speak for the people in your care, of course, but I can tell you that this time I am not looking forward to the re-test one bit. I can feel my anxiety slowly ramping up as the time gets closer. I just don’t want to deal with any of this.
By the way, I stumbled on an article today that might interest some of you: Differences in Rate of Cognitive Decline and Caregiver Burden between Alzheimer’s Disease and Vascular Dementia: a Retrospective Study. You can read it here: https://www.ecronicon.com/ecne/pdf/ECNE-02-000042.pdf
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Thanks for your perspective yet again.Your confidence heading into the first test versus your anxiety approaching the re-test rings very true. I understand completely–and so does your wife from what you’ve written about her.
But please do take the test. There are no cures, but the meds Ralph was put on have clearly slowed down the symptoms. Unlike the graph in the study on Rate of Cognitive Decline, Ralph and I agree that Ralph’s decline slowed after his diagnosis because of the meds.
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I’ve never done any of the tests, possibly because I’m too afraid of the results. Recently Glasgow Memory Clinic were advertising for people to take part in their memory work, whcih would include takings tests and, depending on the results, possibly taking part in drug trials. I thought about it for a while but in the end I didn’t contact them. I’m still wondering if it would be better to know, especially if they could give soem kind of time scale before the symptoms became obvious? Would I use that time to do all the things I’d like to do – or would I spend it worrying about the future?
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I have to admit I chuckled reading this because the question you raise rings so true…I’m pretty sure I would think about what I’d like to do and then waste my time worrying…..
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I think this essay should be published widely!! Memory needs to be assessed in context and definitely with regard to anxiety levels. Who ever thought to make “contented engagement” a goal for caregivers in managing their loved ones’ home lives, was a genius. Its a great goal for all of our lives. I see self-doubt as a major factor that erodes. functioning, whether you are a child strugging with math, or a senior with AD, or an adult with a traumatic brain injury… Anxiety can rise so subtly and quickly, we barely notice when that is the cause of forgetfulness or irritability or disengagement.
Your observations are so useful, Joy. Thanks for putting this into words and sharing.
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Thanks for your insight. Self-doubt and anxiety are definitely linked and both are corrosive to those of us with cognitive problems and those of us without (or at least without any that are diagnosable).
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Love this post. I’ve seen these different tests, and wondered how accurate they are. I have to agree about being suspect of what Dr. Oz says. I think he is too heavily influenced by money!
I’ve thought a lot lately about the anxiety issue. I see it a lot with my hubby. The more anxious he becomes, the more difficult it becomes for him. A good example of this occurred today where he was struggling with how to operate the washer. But this only occurred after he became anxious about a possible plumbing problem.
So, my goal is to keep things on an even keel, and thereby avoiding the anxious response, which brings about the struggle with memory or performance. And so it goes…
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Thanks Carole. The anxiety issue is so difficult, isn’t it? Theirs and ours. I see the confusion spiral each time. But it is hard to avoid, especially because I also don’t want to encourage more withdrawal from the world….
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Thanks Joy. Of course I expected a perfect score and was disappointed at my slip-up , but Ralph’s score on his memory tests was in the single digits.
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Good point, I’ve done such tests and it can be stressful. It does give us perspective on what our loved ones face with Alzheimer’s face.
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