This is an impressionistic narrative, and as such I leave in my feelings, even if later I reconsidered them. It is important to leave this in, as it shows the emotional effect of this getting this information.
Several months ago, the researcher I referred to in the earlier essay, Dr. James Brewer, had an interview in the local paper mentioning a free memory test that got an overflow response. When I called it had been filled up, and they had planned additional sessions the following week, but they only had afternoon openings. I'm a morning person, so set up an appointment for January 24th at 9 AM, but first I verified that I could remain anonymous.
I was uncertain even after they called to confirm the appointment the day before. My wife suggested that I not go, and that I could always say, in spite of my confirming the appointment, "I forgot!" But, I decided to do it, and my first interaction was with the guard as I pulled into the parking lot, and asked him where room C-129 was located. He said, "Oh, yes, that's the Alzheimer's screening. It's right down the driveway and up the stairs." And then with a kindly smile he said "If you like I can walk you over there." I am a pretty friendly guy, affable is the word, but I'm not used to being treated with this much consideration. I thought, "If the test turns out bad, at least there's some advantage in being an Alzheimer's person."
I found my way to the office all by myself and was given the forms to fill out and then I was ushered into a small room by Sandy, who introduced herself as a psychometrician. It's not exactly a profession, but a collection of approvals to administer various types of psychological tests under the supervision of a Ph.D. Psychologist. She was a pleasant young women, and we chatted a bit, and we both felt comfortable. Later I asked her how she handled bad news, when someone was told that he or she had tested in the lowest of the three categories that read:
"PROBABLE DECLINE IN COGNITION that is greater than expectedShe said, "Yes, sometimes they are crying," but that she could send them to a special debriefing room, where there were other people who would explain what that meant, so she didn't have to go into the details.
She explained the first part of the test where she would tell me a story that I would have to repeat at the end of the session. The story went like this, (one that I will probably remember to my dying day) "Mrs Greeeley who had four children worked in cafeteria in a school in Chicago. "One day when she was walking home she was robbed of $46, and the police took up a collection to help her" She repeated it twice, and I listened, repeating to myself, and trying to find some meaning to it. Then came the rest of the test, starting with copying a line drawing of a box, connecting some dots, recognizing three drawing of common zoo animals, and counting backwards by seven from a hundred.
Then came the tough one. She said, I'm going to give a letter of the alphabet and for one minute I'm going to ask you to give all the words that begin with this letter. You can't use common names, or different forms of the same word such as "pain" and "painful." Unlike some of the other elements, I hadn't heard of this, and there were some questions about it, but I said fine, let's go. And she gave me the letter. It was "F."
She had not mentioned whether profanities were acceptable or not, and the clock was running, so in an instant I gave the first word that came to my mind when someone asks to list F words. Yep, confidently starting with "the F word" cleared my mind, allowing me to calmly recite words that came easily to me, all different, none proper nouns, and only one that was a variation of another. I gave this drill to a friend, I could almost see him struggling to avoid the many forbidden words. Soon, she had administered all the tests, and seemed ready to wrap things up, so I reminded her that she had to ask me about Mrs. Greeley She looked at her watch, and I had gone too fast, like in the old days when I was the first to turn in my arithmetic test and had to kill time for the rest of the kids to finish.
She handed me a little yellow paper that read in part:
The individual named above scored 28 out of 30 on the Montreal Cognitive Assessment (MoCA)
Compared with the typical performance of individuals similar in age and level of education, this individual's (me) overall cognitive performance (based on scores of both screening measures), suggests:
X NORMAL, AGE-APPROPRIATE COGNITION.
Stunning! Almost all people beyond a given age start to experience loss of short term memory. and many fear the worst. I never had a good one, and couldn't learn foreign vocabularies to save my life, or algebraic formulas that had no meaning to me. Concepts were, and are, my strong point, and got me fairly far in academia and a decent career. But, my declining memory was too reminiscent of my mother, who at just about my age, precipitously declined, ending her life in an Alzheimer's facility not recognizing anyone in her family.
This little yellow sheet of paper lifted this burden, this sense of dread of a decline that was going to come, probably sooner rather than later. I went into the next room, the one for we normal people, those whom, if we chose to participate, would be compared to those others, those who were called patients by some.
Getting a letter of acceptance from your ideal college. Being invited to the party of all the in people. Being told that the tumor that you had the last time was gone, not a trace of it left. Or perhaps, as one man once told me years ago...."When we finally got to the station we were separated. I was put in line with the smaller children and the older kids, those who were bigger and stronger, were in a different line. I somehow sensed what was going to happen to us, and knew what I had to do. I broke away and rushed up to the guard shouting and making a muscle, "look, I'm strong, I can work....." and he let me go with the big kids."
Euphoria is something that I rarely feel, and have a fear of, as it is usually fragile. But now it's somewhat different. I feel more solid, more confident, less vulnerable than three days ago before I took this dementia assessment. I feel that I have a future, that I can do things, learn things, handle challenges. But now for the other side of this coin, the dark side, the difficult side that I need your help on.
What if I had gotten two more wrong on the test and gotten a 26, instead of a 28. What if I had not gotten the F word out of my way and gotten caught up in not saying it. Or what if I had taken an afternoon appointment, when my mind is slower by a few notches. What if that yellow sheet had began with the words, "POSSIBLE DECLINE IN COGNITION" and I had been sent into that other room, the sad room, the room of tears and fear.
In the room with the normals I met the psychology director, CJ. and then another man and his son who had taken the test previously and did not meet the cut off for normals, so he was going to have a private meeting. I sent him an email but haven't heard back from him. When I asked CJ about the test, she said something that had meaning to me based on my advanced work in Psychology, where I studied statistics, epidemiology and test construction. It was thirty five years ago, but I remember what I learned, and I new what "Validity" meant, which is that a test relates to some meaningful external criteria. This medical board confirmed statement confirms it's defects, "A disadvantage of the MoCA is that conclusions regarding its validity can only be made in memory clinic settings." (see addendum below for comprehensive study on MoCA)
So I asked her some questions. The yellow score sheet said that I was compared to individuals of my age and educational level, except it was not the case. She told me that they did not use age norms, something that is a very big deal, since unless corrected for the normal decrement of short term memory due to aging, you can not accurately assess underlying pathology. She said reliable data weren't available, which is only partly true as it had just been developed, and even if it were true, the known deficit due to aging could have been approximated and used for this test.
Education is another known variable, as those with the same underlying dementia perform better if they are better educated; and if looking for pathology, this should be equalized. In my research on MoCA the cutoff score for mild dementia, which was a scant two points lower than mine, seems to be decided by custom, as in "this is what is usually used."
(This paragraph is a bit of hyperbole, a cathartic rant painting the researchers as unfeeling obsessed scientists- They aren't really like that at all, even if I felt that way for a while) Those who are administering this test, those who need a supply of subjects to be evaluated in their longitudinal study, do need a supply of such volunteers. If they were using laboratory rats, and they do have some that are bred to have dementia, it would not be too important what criteria were used in selection, as the scientific demand would be for consistency, such as how long it takes to run a maze before, and then after the independent variable treatment is administered. We don't worry too much about how rats feel about things,as they don't vote and have very little political clout. Frightened, elderly humans who fear that they will be transformed by a disease that they can't control have pretty limited options also.
In reality, this program is careful not to make any false promises. They are honest, perhaps to a fault, and do not even offer the possibility of a cure. But it does offer access to experimental treatments that just may possibly help those with dementing disease, or perhaps more importantly, offer hope. It also offers palliative care, support groups for patient and family, and access to social workers and other services that can be beneficial.
I am writing this essay at this moment because the euphoria that I am feeling is exactly matched by its antithesis, the depression, that the others, those who went to the other room, what I could have been feeling myself. The disease of Senile dementia is the underlying cause of the suffering I'm describing, not those who are doing research to ameliorate it, yet this does not absolve them of the obligation to cushion the inherent distress of those subjects who participate. They seem to know this, and are actively seeking feedback such as this, which is a good sign.
There are larger issues that go beyond this study, such as the relative benefit of the previous paternalistic ethos of medical care when a patient was never even told the severity of their terminal disease. Is there a balance, a way of only telling what is needed, to allow one the opportunity of hope, that could be a reasonable approach, especially for a society that shows no mercy to one who is dying in pain, whether physical or psychic.
I'm thrilled that I got to go with the big boys, to be one of the healthy work crew, to feel the sun and wind on my face, to survive. But, unlike my friend as a child at the gates of the concentration camp, for older people death is closer for us all, and the looming question is how much suffering must be endured before release. We don't handle this too well in our country. Doctor K, who courageously tried to end the suffering of those who faced the same fate as determined by the spurious MoCa, was condemned to prison and his name was made into a joke as punishment for his effrontery. We demand fighting to the very end, at any sacrifice of other societal needs or imposition of human suffering.
Those working at this research facility are dedicated people. Dr. Brewer (see link to a video of his lecture below) has corresponded extensively with me, making his cogent case for the value of his cutting edge work that promises to not only be a predictor of Alzheimer's, but to use exact MRI measurements to provide an objective index of the disease that could someday lead to a cure. He is not in charge of the screening test, which I'm sure has passed various ethics committee approvals and extensive analysis of potential liability. The director of psychology, whom I refer to as CJ, has responded to many of my concerns about MoCA, rightly pointing out that those who would be most distressed by a false positive, are extensively counseled about the limitations of the testing and not simply shown the dooor after such devastating news.
Yet, real issues remain. Group dynamics, whether among police, military, theoretical physicists, or medical researchers all have a certain pattern. Given their challenges, the need to define values and to resist outside influence is always great. In spite of what the Alzhiemers Association says (see note below) memory loss comes with advanced age to all, and differentiating it from disease is essential. We put "normal" and "disease" in different conceptual categories, yet one lives long enough, however we describe it, severe memory decline is certain. The only choice we have in the near term is to deal with this as a society, something that should not be consigned to any profession, that while dedicated to cure, has tangential interests that can conflict with best achieving the larger conception of this goal, one that transcends medical cure to look at acceptance, resolution, and well being.
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Addenda and Notes
First let me point out the complexity of this subject, as even the diagnostic terminology is ambiguous. The best source for those who want to research this is Medscape, which posts online the full research reports of all medical conditions including dementing ones. Here's a link to Medscape with a sample search.
Other search engines such as Google will lead you to commercial promotions, many by MDs, that promise cures that have never been validated as effective.
Alzheimer's disease AD is a specific disease but also the most common term for profound loss of cognitive abilities associated with aging. It is both a syndrome, a collection of symptoms, and with a theoretical physiological cause. This is a problem that is similar to that of psychiatric nomenclature, as well described by
this article in The New York Times that points out that the seeming accuracy of such diagnoses is an myth that is well understood by the profession, if not the public.
"Dementia" is sometimes used as synonymous with Alzheimer's or AD, while other times used to describe the final state of cognitive decline whether by injury, stroke or other causes.
Mild and Moderate Cognitive Impairment is best understood by looking at some Medscape articles, as any simple explanation will be misleading. Unlike what is commonly expressed in the mass media, this conditions is NOT the inevitable precursor to full AD. Here is a early small study of this finding Mild Cognitive Impairment Does Not Always Progress to Alzheimer's Disease
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Is Memory Loss a Natural Part of Aging?
Alzheimers Association FAQ undoubtedly sponsors many valuable programs for those with this disease. My opinion of them was challenged by their claim that questioned whether memory loss is a natural part of aging." by this statement: "Whether memory naturally declines to some extent remains an open question. Many people feel that their memory becomes less sharp as they grow older, but determining whether there is any scientific basis for this belief is a research challenge still being addressed."
Wikipedia's article on aging brain gives 46 studies showing the ubiquity of this decline, and there are hundreds, if not thousands, more. The only explanation for this false statement is their desire to subtly increase the fear of this disease, in the absence of which they claim, there is no memory decline.
This article from the editors of Medscape lists 8 types of memory, 2 of them being relatively stable throughout life, while the other six "decline with age." This is settled science, and not the "open question" that the Alzheimer's Association claims. Such distortions from such a respected organization is unfortunate.
I contacted Professor Mario Garrett of San Diego State University, who happened to be on the scientific advisory board of Alzheimer's Association, who forwarded my message challenging their statement above. They subsequently did change the wording, eliminating the "open question" phrase, but still placed it under the heading of Alzheimer's Myths,
Myth 1: Memory loss is a natural part of aging.
Reality: As people age, it's normal to have occasional memory problems, such as forgetting the name of a person you've recently met. However, Alzheimer's is more than occasional memory loss. It's a disease that causes brain cells to malfunction and ultimately die. When this happens, an individual may forget the name of a longtime friend or what roads to take to return to a home they've lived in for decades.
They include something that is common among all people over Medicare age, forgetting the name of a longtime friend, as being indicative of having Alzheimer's disease. This is not only false, it is ethically questionable, especially given then knowledge that they have responded to the objection that I made of their over-inclusiveness, and have been sensitized to the importance of this issue.
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Home Page of the Shiley-Marcos Alzheimer's Disease Research Center (ADRC), in the Department of Neurosciences, at the University of California, San Diego in San Diego, CA, USA. This gives an outline of the complex entities of funding, professions, and specific research under this umbrella.
This is a link to the newsletter, Currents, written for those subjects in the research program explaining new advances along with opportunities for participation in specific research programs. This gives a taste of some of the aspects of being part of a community that is one of the benefits of this larger program.
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Emotional consequences of learning about one's dementia prognosis
This is a hard concept to measure. This recent study, Reaction to a Dementia Diagnosis in Individuals With Alzheimer's Disease and Mild Cognitive Impairment, shows no increased depression upon learning of this prognosis. The limits on this conclusion that are considered in the discussion section of the report are important.
Here's the study showing that knowledge of prognosis is correlated with increased depression.
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Reporting cognitive condition to individuals in UCSD screening
The report given to those who take the screening test states that it is based on "individuals similar in age and levels of education" which is not the case. The Aging Project Director, Cicily Jenkins Ph.D, told me after my testing that reliable norms were not available. She was aware of this article, Normative data for the Montreal Cognitive Assessment (MoCA) in a population-based sample, in the professional journal, Neurology on September 14, 2011.
The full article, provided to me by the main researcher, Heidi C. Rossetti, Ph.D, contains statistics for Education, Ethnicity and Age, allowing for correction of the raw score to reflect underlying pathology.
Important Note: Dr. Jenkens, CJ, has responded with an explanation for this criticism, that is by and large reasonable. While the MoCA is as I described, there is another component of the assessment, Story A of the Wechsler Memory Scale, that is incorporated into the feedback that does have these age and education norms. And those who are told they have memory problems are given extensive counseling before leaving, with the goal of assuaging their concerns. Whether this is effective or not, is still an open question.
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This is the link to a video lecture by James Brewer that is an excellent primer of the state of current knowledge of dementia, along with his specific work on developing computerized MRI imagery that gives a more precise understanding and accurate prediction of dementia.
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Studies that refute the common belief that Dementia is a inevitably a progressively degenerative condition.
The diagnosis of MCI, or Mild Cognitive Impairment, commonly implies an annual progression to full Alzheimer's disease. A N.Y. Times article over a decade ago (that I have not been able to locate) gave this as 25%. Knowing this was absurd, which has been confirmed, I refuted this in a letter to the executive editor, pointing out the dire effect such misinformation would have on the elderly who know their memory is declining. He never responded, and the statistic remained.
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Essay in a Democratic Blog, Dailykos.com on lowering the threshold on Alzheimers: Lost your keys: You now have Alzheimer’s
http://www.dailykos.com/story/2011/04/21/968327/-Lost-your-keys-You-now-have-Alzheimer-s-
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Letter from Dr. Brewer on reading this paper on inappropriate proposed diagnosis procedure:
Hi Al,
Well put. Where you see me as presenting dangerous information to patients who seek it, I see you as arguing to withhold such information for fear that the patient (with their physician’s guidance) can’t adequately handle it. To me, such withholding of information is akin to the old paternalistic days of medicine when doctors would decide not to tell their patients about their terminal cancer, thinking “it’s better for them not to know.”
Regarding false positives, it is important to note that our volumetric assessment is not a diagnostic test nor should it be presented as such by the physicians who order it. It simply lets the physician quantify what is already objectively in the images… that the hippocampus (the brain’s memory structure) is smaller than expected for age and this suggests neurodegeneration. Hippocampal atrophy is not a diagnosis, just like a rash on the skin is not a diagnosis- it is an observation that helps the physician make a better assessment of the patient. (E.g. this rash might be part of why your arm is itching… This hippocampal atrophy might be part of why you are having problems with your memory. We need to do more assessment to get to the cause and proper treatment). Do not think that I am equating the severity of having a rash with the severity of having hippocampal atrophy- just trying to make a point about the difference between a physical observation and a diagnosis. On the other hand, do not respond that “there is no treatment.” If poor vascular health or diabetes is concomitant with the hippocampal atrophy, then they should be aggressively addressed. Clinical trials in AD might be pursued. Education about neurodegeneration should be pursued. Just like any test in medicine, whether it is low iron, or white matter lesions in the brain, or hippocampal atrophy, the observation is taken in conjunction with the overall clinical picture to reach the best assessment or “diagnosis” possible. Even the opinions that the physician’s express are more likely to be assessments than hard and fast diagnoses.
Taking on a single researcher, like me, who has interest in providing patients with a biomarker of neurodegeneration will not get you the impact you seek, I think. You would have to, one-by-one, take on hundreds of individuals and even companies to get there. In a few months, FDA approval is expected for an imaging test that will display whether one has “the pathology of Alzheimer’s disease” in his or her brain. It is a compound produced by Lilly and it is called Amyvid (generic name florbetapir). This one is much more controversial, in my opinion, because it will be heavily marketed as “the Alzheimer’s Scan” when, in fact, 30 percent of healthy individuals without memory complaint or any cognitive problem have the elevated protein, Amyloid, in their brains. Therefore, a person with a memory complaint can have elevated amyloid without it truly being the cause of their complaint. They will go home having been told they “have Alzheimer’s” when in fact, the complaint might be due to a bladder medication or sleep medication they are on, the sleep problems themselves, or depression. These causes would be treatable, but might no longer be pursued, since the “answer” was seen in the scan. (By the way, those treatable conditions are not associated with severe hippocampal atrophy, so the lack of atrophy might help point the physician in the right direction).
Also, a negative Amyvid scan does not guarantee a benign prognosis; it simply means the diagnosis is not Alzheimer’s. Other neurodegenerative diseases might be causing the patient’s complaints and they will be headed to dementia nonetheless. Imagine getting the “good news” that you do not have Alzheimer’s, based on the Amyvid scan. A patient poorly counseled by their physician might cancel their expensive long-term care insurance. Two years later, cognition has continued to decline (perhaps due to dementia with Lewy bodies, or Frontotemporal dementia) and the patient is now fully dependent on relatives for care. (I now see that I discussed this topic with you in a prior email, but since these prior paragraphs had a bit more info, I will leave them in the email).
Simply put, I think you should focus your efforts on working with a researcher that can look across the broad range of tests, APOE4, other Genetic tests, Amyvid, Volumetric MRI, CSF tests for amyloid/Tau/pTau, and specific cognitive tests that might give the patient’s physician a greater accuracy in assessment of AD, the same greater accuracy that you seem to fear is causing more harm than good. Please remember that these patients are coming to their physicians specifically asking for help and information. They are not being yanked off the street and tested against their will (yes, I did re-read your discussion of the tremendous pressures to gain more accurate information for reasons beyond optimal patient care- this is an issue that certainly extends well beyond this single test). Yes, one has to be conscious of the impact that bad news has on a patient. Resources should be given to help them and their families deal with the unfortunate information. For additional insight, expand your argument to other areas of medicine where terribly bad news is given- ALS, inoperable cancer, genetic abnormalities in one’s child… one could, sadly, go on and on. In each of these diagnoses, denial is an option- and in some cases, patients take that option.
I suggest that you pursue a collaboration with Jason Karlawash, an ethicist from the University of Pennsylvania, whose research and research funding includes work to address the questions you bring up. You would have a much wider impact that way. No doubt, your questions are timely. Good luck with your endeavors on this and I will keep my eyes open for articles that might be relevant.
Jim
