TESTING: A MIXED BAG
Testing for Alzheimer’s and its clinical course is not a straightforward matter.
Beverly and I experienced several testing moments at the earliest stages and continuing. The medical evaluations were always manageable with her. She was OK about meeting with a physician and discussing the potential issues with her memory. To this day, there seems to be no problem with drawing blood for the various tests needed. And an MRI of the brain was successfully performed. (And recently, after her fall, even an EEG was successfully performed.) The early process, which included all of that, served to eliminate alternative explanations for memory difficulties, but did not provide a clear-cut Alzheimer’s diagnosis.
The Mini-Mental State Exam, MMSE, discussed below, did provide a more definitive answer for the physician at least. In the first round, meeting with a Gerontologist following the MMSE administered by a psychologist, there was an official diagnosis of early Alzheimer’s.
Then a few months later we went to the Neurology Clinic at the University. They, of course, repeated the MMSE and changed the diagnosis to Mild Cognitive Impairment (MCI). That meant essentially that the problem was confined to memory, having not impacted much else in her functioning. This was only mildly encouraging to me as it was still clear to me that there was a significant impact on memory and on “executive function” (planning, organizing, etc.).
Then the testing was repeated every 6 months; it was always clear that she hated the testing. She has always been sensitive about failing at something and she knew she was failing at several parts of the test. The very first time the MMSE was administered, the report said this: “She stated multiple times that the testing was ‘humiliating.’” We can all relate to that; if you are able to know that you are not doing well, even failing, you will have such a feeling. She is particularly so.
It was only a year after the first Neurology clinic visit that the clinic changed the diagnosis to early Alzheimer’s. And the testing became increasingly aversive for Beverly as the failing at it became worse.
The Neurology Clinic and her Neurologist were always great with her, offering encouragement and support. But we knew there was no cure, only the drug(s) that might slow it all down a bit or get a minimal reversal for a short time. We tried that, but did not see any difference.
Then there were offers of participating in research. The last such offer involved drilling holes through the skull and injecting a biological substance that was self-replicating in the brain. That concerned me, and our daughter (at NIH), upon reviewing the procedure, said “NO” emphatically. This had been tried on very few humans and there was virtually nothing known about effectiveness and risks. Someone has to be first, but not us for a dangerous-sounding procedure.
She never wanted to participate in research anyway, even relatively benign ones, largely because the psychological tests would be required and repeated. She hated the tests.
And then there was one last MMSE in the regular Neurology clinic procedure. After 30 minutes or so, she exited the test in an angry mood, stating that they showed her this wood block that was painted brown and asked her to describe it. She told them, “This is so stupid. Of course, I know what it is. What a stupid test.” My suspicion was that the whole test procedure was tiring and the test had already triggered her “I am failing” button. I inquired about that item and the Neurologist claimed that it would not have any real impact on her status. That was the end of that effort with Neurology; there was no treatment and no particular recommendation for any drug to manage symptoms, namely the anger, depression, and paranoia.
And it was certainly the last time she allowed herself to be tested. When she moved into the Memory facility, there were multiple efforts to test her. And those were serious efforts by the staff to test. After two previous attempts, they waited a few weeks, then wanted her to play a game with them. That worked fine as long as there was a game in the activity. But as soon as it slipped over into being the testing again, she simply announced, “I know what you are doing” and quit. As soon as she knew it was a test and she was failing, it was unhappy and it was over. She was savvy enough to see through any ruse they tried.
The reality is that the various scans are not as definitive as one might expect either. The Neurology report of Beverly’s scan only indicated that there was evidence of “mini-strokes consistent with age.” Any of us might get the same report. This, of course, ruled out some issues other than Alzheimer’s, but did not result in a positive diagnosis.
I found a striking case of the problem with such scans, especially when repeated. In his remarkable book The Soul of Caring, Dr. Arthur Kleinman describes repeated CT scans and MRIs in an effort to diagnose his wife Joan. Multiple experts were puzzled, though finally one Neurologist provided the diagnosis of a rare form of Alzheimer’s. And later when MRIs were performed every six months, there were continuing changes in the MRI. But the information in the Neurology report was not of any use to Dr. Kleinman in managing his wife’s dementia. The Neurologists could not provide any useful connection between what was seen in the MRI and anything about Joan’s current functioning and how she could best be cared for. What mattered to Kleinman was what he and others observed in her functioning so as to effectively care for her.
Note that I have talked with others who have had a more complex relationship with these issues. One caregiver told me that there were 4 years of trying to determine what her husband had, which finally was Alzheimer’s.
And there are a number of people who have argued that they do not want a diagnosis at all; that only creates more unhappiness. There is no treatment with much effectiveness. Whatever my loved one is doing and experiencing, a specific diagnosis does not change what they are experiencing and what I (the caregiver) needs to do in managing them. The designation “dementia” may be needed in terms of insurance (at least the long-term care type), power of attorney, and placement.
CONCLUDING
Diagnosis and staging are such difficult issues; for us, different medical practices gave us different answers initially. First the Gerontologist (based on MRI and testing) reported it as Alzheimer’s. Then the Neurology clinic said it was Mild Cognitive Impairment, a happier diagnosis though MCI often becomes Alzheimer’s over time, as it did with her. And there is no clear-cut answer to what stage she was/is in at any point. Based on the Clinical Dementia Rating (CDR), as I completed it, she is a “3” now, which is Advanced Alzheimer’s. The CDR was never used by any of the clinics or facilities, at least that I was informed of. The CDR involves rating rating different aspects of functioning, including dressing themselves, toileting, communicating.
Diagnosis has some benefit, but it is limited and also potentially very limiting. By that, I mean that it is easy to simply throw up your hands and give up; “It is Alzheimer’s and there is no cure” can be the response. That response should not be the direction someone follows. We do much better by caregiving the loved one as well as possible, by love, kindness, understanding, and a tolerance for their altered behavior and emotions.
And note that your involved and thoughtful experience with how your loved one functions now and with caring for them may be more useful to you than the results of testing. Input from others who interact with him or her is often important as well. Of course, you must continue to understand that there are issues with him or her that result from what is happening to the brain.
Keep in mind, too, that Alzheimer’s and other dementias have extremely variable outcomes. One person may have an unchanged personality, as is true with Beverly. Another may develop a consistent angry attitude or be extremely sad. The person with dementia may become extremely different than what you knew before. Do not count on a diagnosis to tell you what the changes will b
For diagnosis, your loved one will likely need to undergo the medical and psychological evaluation/testing process. After that, it may be useless to continue with MRI and other scans, as these may not provide useful information anyway. And repeated psychological testing could be of value for placement or insurance. Still repeated testing may prove to be a form of harassment; be aware of how your loved one reacts even if you are not there during the testing procedure.
FOR THOSE WHO HAVE DEALT WITH THESE ISSUES, TELL US ABOUT YOUR EXPERIENCE.
An important function of this blog is for those have gone through the diagnosing process to tell us about that. What were your experiences? What did the medical system perform in the way of testing/evaluation? How did that change over time? And was any of it that worthwhile for knowing how to manage your loved one.
TESTING PROCEDURES (A bit more detail for those who are dealing with diagnosis)
Medical tests, including a physical examination and brain scans along with blood tests (and some other procedures) to eliminate alternative causes of impairment rather than a form of Alzheimer’s or another dementia. The physical examination and laboratory tests are worthwhile for ruling out infections, B12 deficiencies, and other possible causes of, or contributors to, dementia.
Brain scans can result in a positive diagnosis of Alzheimer’s, but the expense of scan is generally an issue. Brain scans with PET, CT, and MRI have some function, of course, particularly for information about stroke (mini-stroke particularly) history and other injuries to the brain, but often do not provide a clear positive diagnosis of Alzheimer’s. Repeat scans may show changes, as a disease process progresses, but the information may not be useful. The new PET scan for amyloid seems to be definitive, but it is reportedly $5,000 that insurance or Medicare is not likely to pay.
Advanced blood tests are likely to be effective but are still somewhat in the “research” phase.
Psychological tests and evaluation. The tests most commonly used are: a) the Mini-cog used by many physicians to screen for early signs of dementia, b) the Clinical Dementia Rating used by physicians (typically neurologists) and other professionals, and c) the Mini-Mental State Exam (MMSE), typically administered by a psychologist, social worker, or trained aide. A variety of other ratings and tests are out there, too much to discuss here. Also there are evaluations based on interviews with a close family member or friend, in which the focus is on the day to day functioning of the patient.
None of these “tests” alone is generally sufficient for a certain diagnosis of Alzheimer’s or of another form of dementia. Nor of the stage of dementia either. But, in combination, with psychological tests, these provide reliable and valid diagnoses in most cases.
The Mini-Cog is remarkably simple. The person is given the names of 3 common objects and asked to recall them after a slight delay. And the person is asked to draw a clock face and set the hands to a time stated by the professional.
The Mini-Mental State Examination is a series of tasks, including memory for 3 names of objects. The other elements include: knowing where the patient (city, state) is and what day and year; following a sequence of instructions; repeating a number sequence forward and backward; copying a simple geometric drawing, etc. A slightly revised version is available at several online sites, such as Dementia Care Central (dementiacarecentral.com). And administration online must be done carefully and objectively with final score done by the website. The range of 0 – 30 provides a useful quantitative measure with 24 as a common but imperfect cutoff. (Note that the most common error produced by this cutoff is that well educated, smarter people do well even though the Alzheimer’s is clearly there.) This might be especially tricky for some to do online. It is useful to know what areas of functioning are most impacted. Websites like Dementia Care Central will also discuss other psychological tests that are reportedly newer and better than the MMSE, but I have not seen them.
And there is also a modified Clinical Dementia Rating (CDR) that would normally be administered by a professional, but the modified version could be used by someone who knows the patient fairly well. Each scale has a 5 point range and the scores are summarized for an overall indicator of the stage of the disease. Dementia Care Central (dementiacarecentral.com) provides the rating scales and a scoring of answers given on line. It is critical here to be as objective as possible for each rating scale. The website will take entries and convert them to a numerical scale with a range of 0 – 3 with particular regions for Mild, Moderate, and Advanced Dementia. Personally I have found this useful, especially since she will not allow regular testing. But, of course, it is quite subjective and not useful with certain matters, such as placement or insurance/Medicare coverage.
Side Note: For all of us aging folks, it is useful to see what is in the Mini-Cog and especially the MMSE. We all have lapses of memory that we didn’t have before. And that gets us wondering about whether this is the path to dementia. Have someone administer the MMSE on you. If you struggle with knowing where you are (U. S., state, city, and particular building) or with what date (at least year and month), can’t sketch the little intertwined geometric figures, etc., then you should be wondering more seriously. Most likely what you will discover is that those little slips (forgetting where you put your keys, not being able to find a word or a person’s name) are all normal after all.