Not long after I wrote (here) about the results of my August 2013 neuropsychological examination, I shared those results with my faith community that has been accompanying me on this journey with cognitive impairment. Carol, a friend from the community who is also a neuropsychologist, offered to review the official report I’d received from the National Institutes of Health (NIH).
In her professional capacity, Carol administers and interprets the same tests so I was grateful for her offer. After reviewing the results, she told me she disagreed with the NIH interpretation and that the examination showed clear evidence of cognitive impairment.
On the one hand, her comments shocked me. I’d studied the results of the examination, which comprises multiple separate test items. All but one individual item had been within normal limits. How could the overall examination, then, show impairment? On the other hand, because her conclusion confirmed my own experience of impairment, it left me feeling less crazy and paradoxically relieved.
Just before my recent trip out West, Carol and I sat down and went over her interpretation of the test results item by item. The following is my summary of our conversation.
My IQ was 133, which the narrative described as “superior.” The importance of my IQ, she said, is that it affects the interpretation of some of the individual test in the rest of the evaluation. Considering my overall IQ, the scores of a number of the individual items should also have been considerably higher than the normal range. Many of my scores, however, were only slightly better than average, some of them were below average, and one was so low as to be outside the normal range.
For example, the tester read me a “story” comprising fifteen to twenty discrete “pieces” (for instance, in the sentence “He got up from his chair and left the room” there are two pieces, “getting up” and “leaving.”) I was to re-tell the story, including as many pieces as possible. The normal range for this test is to remember anywhere between 7 and 13 elements. I remembered only 8, still within normal range. Carol said, however, that a person with my IQ should be able to remember at least 13 elements. In other words, taking my IQ into account, my low-normal score indicates impairment in that particular area that measures a certain kind of memory.
Part of the official report is a narrative account in which the interpreter summarizes the implications of the evaluation as a whole. The report, Carol felt, was too brief and did not explore the inconsistencies that Carol had noticed.
Her conclusion was unequivocal: the testing that had previously been interpreted as showing no impairment did in fact show considerable impairment.
Carol’s report has been quite important for me emotionally, which I’ll look into in my next post. I realize that I’m just choosing one expert’s opinion over another’s without having the professional expertise to evaluate one over the other. The NIH version, however, makes me feel crazy, and I’m not crazy. For now, I’ll stick with not feeling crazy.
That makes so much sense to me. If you didn't start in the normal range why would finishing in the normal range not be seen as diminished? Thanks for that insight.ReplyDelete
We had this same problem when we began getting testing done for my mom. She had a higher than average IQ and many of her impairments didn't show up on the first neuropsych test. It was the second test, taken one year later by the same professional, that really helped us convince the doctors that we were not crazy... the decline between exams was the ticket to getting a proper diagnosis - though right now we have had three different doctors come up with three different diagnosis of what kind of dementia so we are still somewhat in the dark. I wish doctors were better educated about dementia and had better diagnostic tools.ReplyDelete
I hope that having someone back up your perceptions will give you some peace and the ability to move forward with living with your condition.
Better education of doctors would be fairly straightforward. At least for primary care doctors as I was, a central part of education would be to recognize that patient complaints of decreased cognitive function should be taken very seriously because early cognitive impairment won't show up on the tests normally given. Then the primary care doctors need to know that there are more comprehensive tests available. If the doctor does not feel competent to work with these tests, then referral to a neurologist is indicated even in the absence of objective tests. I am fortunate to have such a primary care physician and there are many more who have had this education already.Delete
Better diagnostic tools are on the way but are still incomplete. It's a very tricky business. In terms of making a diagnosis of cognitive impairment, very sensitive neuropsych tests are available. They're not perfect, of course, but pretty good. Objective physical evidence of early dementia is harder to get. There are good tests for Alzheimer's on the way but we still don't know how good they are and they're not in wide-spread use. (They're also very expensive, like $4000 for one test.) We don't have good tests for some of the other kinds of dementia when they're in their early stages: Lewy-Body dementia, Parkinson's, vascular dementia are all difficult to diagnose early.
It's certainly much better than it was twenty years ago when I was in practice and the only test I knew about was a ten-question mini-mental status exam" in which one had to be so obviously demented as to obviate the need for a test.
I thought you could detect the Lewy bodies in spinal fluid. I have a friend who had a family history of this disease and was in a study of relatives at NIH, and after a spinal tap, they told her to find a doctor who would work with dementia patients. This was before there were any other signs.Delete
As far as I know, Lewy Bodies cannot be detected in the spinal fluid. A spinal tap is an essential part of any medical evaluation for cognitive impairment because it can find other causes of cognitive impairment (such as a brain infection). My understanding is that Lewy bodies are found in brain cells themselves and not shed into the cerebrospinal fluid. If you have any contradictory information, I'd be very interested in getting it.Delete
I suspect you're correct. It was after the spinal tap that they hinted (wouldn't say so outright) that she had the family disease, and I inferred that it meant the Lewy bodies were in the spinal fluid. But it may have been the results of all the tests they gave her.Delete
The information below is taken from the report for my caree, following three days of neuropsych testing and 25 administered procedures:ReplyDelete
1. Her scores ranged from the second percentile to perfect.
2. A low average score on a test of reasoning was "significantly below" her general verbal skills.
3. Scores on both immediate and delayed memory recall were "significantly lower than expected," given her level of general intellectual functioning and verbal abilities. "These differences are rare and likely to be noticeable." The same is true of her auditory memory.
4. Her score on one delayed recognition test was "severely impaired" for her age and education, while her score on a delayed forced choice recognition test was perfect.
I wanted to share this information with you because my caree was tested at a facility with an excellent reputation. The report analyzed scores in relation to other scores rather than in isolation. That methodology is more in line with Carol's than with that of NIH.
To be fair to the researcher at NIH, it's important to point out that your caree's scores were so much more severe than mine that their importance that I'm sure they would not have been missed by my tester. the differences between individual tests in my case was much more subtle.Delete
I should have been fairer in my post to the NIH tester: I don't have any other evidence than Carol's say-so (which I do trust), and I don't have the expertise to judge whose results will turn out to be more accurate. Plus, I'm sure that the changes on my exam were much less marked than on many others.
David, you are NOT crazy -- this was a most interesting post. (Dori from AZ)ReplyDelete
Due to a computer crash, I'd lost the link to your blog for some months and just now read up on what has been happening. I want to join the chorus of those who are encouraging you to use this blog as you see fit, not as an obligation to anyone. One thing that strikes me about your experience is that it chronicles just how difficult a diagnosis of Alzheimer's, or, indeed, a variety of cognitive impairments, is, and how challenging the results can be for a person who is clearly experiencing cognitive decline. If anything, it's helpful for me, at least, to understand that the brain still has secrets that medical science has yet to unravel. It's also a stark reminder that, no matter what happens to us, we remain ourselves, not our diagnosis, and that we must remain flexible and open as our own individual journey unfolds.ReplyDelete
A good physician knows that medicine is a very inexact science. We've begun to understand some things but much eludes our grasp and perhaps can never be within our grasp.Delete
I agree that better education of primary care doctors (and even some neurologists) is necessary and that patients' complaints about decreased cognitive function must be taken very seriously. I was pleased to see that the 2013 Alzheimer's Association International Conference had research presented on "Subjective Cognitive Decline/Impairment" and that there is an international working group trying to define the concept and see how it can perhaps predict progression to MCI and dementia. Some of the present tools for diagnosis (PET scan, neuropsych testing) still unfortunately leave room for interpretation, and we should not be shy about seeking other opinions when the diagnosis doesn't jive with our subjective feelings. and all of us need to be vigilantReplyDelete
Do you have any references for research or summaries available to the general public on Subjective Cognitive Decline/Immpaiarment?
David, given your "unmooring" in August, I wonder if you regard this latest news as distressing or reassuring? If we differ in interpretation, I hope you'll forgive me if I take the side of "distressing," being the child of a father who passed away from Alzheimer-related causes three years ago. I would wish that journey on no one.ReplyDelete
In that spirit, may I remind you that this still does not explain the three PET scans that show no signs of AD? (http://davidhilfiker.blogspot.com/2013/08/whats-going-on.html) So there is still hope (wording from my POV) that there is some other cause of your symptoms? Or do you believe these also might have been misinterpreted, and/or inconclusive?
No matter what, my best to you, and thank you for sharing this journey with us.
Finding out that my cognitive test did indeed indicate signs of cognitive impairment was reassuring for me in that it affirmed my own experience. If I wasn't cognitively impaired, where were all these weird symptoms coming from? The new test results didn't really add anything new; they just removed a crazy-making contradiction.
The research that I have done on the PET scans for AD indicates that false negatives (ie the test is negative but the patient has AD, anyway) are quite unusual, Given that I've had three negative tests, I no longer believe that AD is the source of my impairment.
I'll post about this in a few days, but I'm guessing at this point that the eventual diagnosis will be vascular impairment. I'll see my neurologist at the end of the month and have a better idea.
The latest news indicating that the neuropsych testing from August does indicate cognitive impairment is actually reassuring because it supports my own experience. It doesn't really add any new information but rather removes a confusing contradiction between my subjective experience and objective test results.Delete
According to the research I've done, the PET scans for AD have a very low false negative rate (ie if the test is normal, there's little likelihood that the person has AD), Given that I've had three such negative scans, the likelihood that I have AD is vanishingly small. I've come to the conclusion that I don't have AD. I'll write about this perhaps next week, but I'm now guessing my impairment comes from vascular disease (ie mini-strokes). I'll see my neurologist in a few weeks and get a more objective, more educated opinion.
My mother's psychiatrist has been completely unable to calm her dementia-related agitation. Could SSRIs and other psychotropics actually be worsening cognitive impairments? He attends to her so curtly that I find it criminal. Her 15 pills a day must be wildly interacting or even toxic. Her character is unrecognizable to me.Delete
I've always believed that if you don't like your doctor, for whatever reason, you should (if possible) switch doctors. it's always been my feeling (an my personal practice in finding a physician) to insist on someone who listens carefully to me and is willing and able to dedicate enough time to me. In most cases those criteria trump any supposed advantage of greater technical or intellectual skill. It's no news that there is an unfortunate tendency among physicians to spend less and less time with patients and use technology more and more (especially medications). But one of the problems is that the psychotropics AND the Alzheimer medications can worsen behavior problems, too. Too often another medication is then ordered to solve the problem the first one caused. When I was a physician, I would sometimes admit older people with many, many different medications. Often, at the beginning of the process in the nursing home, I'd just stop them all (or almost all) and add back only what was necessary ... which was usually only one or two. (I would never recommend that course to you or to anyone that I hadn't examined and planned on caring for in the future.Delete
I'm curious. Is there a link between the diagnosis/test interpretation and the level and amount of medical care or medication as covered by a person's insurance?ReplyDelete
In addition to overlooking the discrepancy in the test interpretation which your friend observed (i.e. your individual normal isn't a standard normal), doctors could be under pressure to be conservative in their diagnosis of MCI and dementia. The inner cynic has been considering that question for a number of posts now.
In my case, there's no incentive at all for overlooking evidence of impairment. The testing was done at the National Institutes of Health under outside funding, so there would be no financial incentive for anyone. If anything, the incentive would go the other way because the researchers are very interested in early cognitive impairment and would favor positive results.Delete
Even in normal medical situations, there would be no financial or other incentive for interpreting positive tests as normal. One might argue that in a health maintenance organization there is an incentive to avoid ordering tests, but, once ordered, no reason to report negative results. In fact, in that situation a negative test would be perhaps even more likely to lead to more testing as doctors tried to figure out what was wrong.
But the overwhelming fact is that a doctor intentionally reporting false results is going to eventually be discovered and that will destroy his/her career and subject him/herself to very expensive law suits.
In my case, for instance, if I were to come back in a year and repeat neuropsych testing were to reveal more obvious impairment, the attending doctor would very likely go back and check the previous exam. If there were evidence that the first interpreter misreported something obvious, his reputation would suffer significantly. If there was any evidence it was intentional, his career would be over.
David, how is your short term memory, do you frequently forget the recent conversations or do you keep asking the same questions?ReplyDelete
It depends on what you mean by short-term memory. I just led a two-hour seminar for post-college students who are interning in our nonprofits in Washington, and I had no trouble at all responding to the students question, remembering what had been said, or speaking quite appropriately,Delete
On the other hand, if I saw one of them tomorrow, I could forget a name. When I read books to my grandchildren, they have to tell me what we read the previous night. I will completely forget conversations from a month ago.
So really short-term memory is fine; mid-term memory is definitely impaired. And my long-term memory has been impaired for at least forty years, so I can't say if anything has changed.
is not this a proof that you do not have alz's as short term memory is always impaired in all cases?Delete
It turns out that it's highly unlikely that my diagnosis is Alzheimer's. Starting with my post on Oct 30, "Letting Go of Alzheimer's, I've been trying to work with what all the tests mean.. My several PET brain scans were negative and the false negative rate for them is very low; there's almost no chance it's AD. So it's been quite confusing. I'm thinking more now that it is vascular cognitive decline, but that's not at all certain, either. I'll have more to say about that in a week or so.Delete
I find it extremely frustrating that more doctors don't have routine tests that they can perform on their patients to diagnose AD. Surely, with the aging baby boomer population heading towards 70 this would be a very necessary tool to have at their disposal!ReplyDelete
As I mentioned above, I'd settle for primary care doctors recognizing that there can be cognitive impairment even in the face of normal screening tests and, therefore, referring all patients with subjective cognitive complaints to neurologists for further detailed testing. While some primary care doctors will get extra training to interpret more complicated test results, most would not (and can't be expected to). But they do need to know when a referral is required.Delete
Diagnoses are, unfortunately, subjective, even with the newest PET scans. My husband's glucose and amyloid PET scans seem to point clearly to Alzheimer's, but his primary neurologist still believes he has FTD. He says the PET scans are only accurate about 80% of the time. So, yes, to some extent you do choose who to believe, if only to give a name to what you're experiencing.ReplyDelete
While, as I mentioned above, the PET amyloid scans for Alzheimers have a very low false positive rate (ie if the results are normal you almost certainly don't have AD). In your husband's case, his results are positive and false positive rates are about 20%, so the primary neurologist is correct that the results are accurate only 20% of the time. Distinguishing between AD and frontotemporal dementia (FTD) is quite difficult. I think, but I'm not sure that there is evidence on the PET glucose scan of decreased function in the front of the brain. But the first symptoms in FTD are usually quite different from those in AD. The problem is that they can overlap.Delete
First time commenter here. First, thank you for your openness and honesty in your blog. As my mother starts a cognitive decline, your thoughts and experiences are helpful to me.ReplyDelete
Second - the information you share about your cognitive testing reminds me of testing of my now-adult daughter during her school years. She was born prematurely and had an intracranial bleed. As a young child, she reached her developmental milestones, but at a much slower rate than her peers. As she reached school age, her dad and I saw significant strengths - her language, her memory and also significant impairments - extreme sensory defensiveness, impaired and slow motor planning, inability to generalize learned tasks from one situation to a similar situation. One set of school testing came back "normal" and the expert said she was a little "anxious." Eventually, with more life experience and later confirmed with another tester, something similar to what your friend found was explained to us. Our daughter had an overall high IQ; her specialized testing in some areas showed great capability and in other areas was severely below average or average. The new experts explained that this did indeed indicate an impairment, and also explained how our daughter was using her cognitive strengths to compensate for or even to mask her impairments. It was particularly obvious in regards to her use of her memory to "remember" how to do something, rather than to learn to problem solve. For example, at age 4 years old she would appear to be able to typically climb into the kitchen chair. However, she had memorized how to climb into that chair positioned just so. If it were a different chair or even the same chair turned in a different direction, she could not figure out how to climb onto it. One expert explained that it was like a person playing a piece of music beautifully on the piano, but having only learned that piece - not having learned the generalizeable skill of sight reading and piano playing.
To make a long story shorter - the concept of a higher IQ obfuscating testing results is a very real one in my experience.
Thanks for an enlightening story from another, slightly different angle.Delete
I read an article by Susan Jeffrey dated July 29, 2013 titled "Subjective Cognitive Impairment: The Next Big Thing?" at www.medscape.com. It is about 6 pp. long and summarizes some of the research. There is likely to be more information since then that I haven't read.ReplyDelete
The article is great, and I'll be writing about it soon. It can be found at: http://www.medscape.com/viewarticle/808581Delete
Just curious, did the tester make any comment on if your recognition memory was better than recall ability or say anything about benefiting on testing from hints or repetition? I work at a Cognitive diagnostic clinic as a health educator and often review and interpret reports for patients and families. People with vascular cognitive impairment often benefit more from cues and hints to access stored memories than people with more of an Alzheimer's like pattern where the memory is not stored to begin with so hints don't help. In "General" memory issues related to vascular disease tend to be more a problem of access and retrieval than initial encoding of memory but of course that can vary depending on where the damage is occurring the brain. Of course considering that you are in a MCI like stage or earlier even that distinction may be hard to quantify.ReplyDelete
I don't remember any comment about differences between or recognition or recall. I do have a copy of the test itself but can't tell from the two- or three-word descriptions what's what.Delete
It is fascinating, however, that there are such fine differences between the two diseases. I imagine there are overlaps in some patients, though.