In this test, we took his brain on a demanding, cognitive test drive to assess his verbal, visual, and working memory, his language, his abstract skills, his processing speed, and many other aspects of his intellect. We discovered that although he was smarter than most people his age, scoring at the 98th percentile, he performed poorly on some tests of auditory memory, confirming his own suspicions. Because he was still functioning extremely well, I diagnosed him as having cognitive impairment — without specifying the cause — and put him on medications to help his memory. Over three years of annual testing however, he continued to decline on specific memory tests.
This concerned us both and my patient desired diagnostic clarification. Cerebrospinal fluid analysis revealed tell-tale amyloid plaques and neurofibrillary tangles, the fingerprints of Alzheimer’s disease. So, at the age of 67, my patient now had biological evidence of Alzheimer’s disease, although he continued functioning well at his law firm and few people suspected problems.
Even I, his neurologist, with 25 years of experience in cognitive neurology, could not tell from repeated conversations with him over three years that he had any real memory issues.
So, what was my verdict? Did he or didn’t he have Alzheimer’s disease? My answer has gotten more complicated over the years.
My patient was holding his own in life thanks to his tremendously versatile brain, which continued to be mostly resilient to the Alzheimer’s disease pathology. I told him he had mostly asymptomatic Alzheimer’s disease. However, the lay narrative of Alzheimer’s disease is unvarying and grim, and I worried that my patient would succumb to its nightmarish predictions.
I needed him to understand that an individualized approach is key to diagnosing, treating, and living fully with Alzheimer’s disease. For example, you could sit through dinner with another patient of mine, diagnosed with near identical spinal fluid analysis over a decade ago, discuss Yeats, Sinatra, yesterday’s news and today’s stocks, and leave thinking, “He has Alzheimer’s? No way!”
For one thing, the clinical diagnosis of Alzheimer’s disease hinges on functioning, which depends on performance expectations, varying from a seated Supreme Court Justice to a retired postal employee. The expectation each of us has of our memory and cognitive function is based on our specific set of circumstances, so context cannot be ignored when evaluating cognitive deficits.
To confound matters, even the assumption that plaques and tangles cause the symptoms of Alzheimer’s is now being questioned. Amyloid plaques are starch-like deposits found outside nerve cells, and neurofibrillary tangles are hair-like clumps found inside nerve cells, and the traditional thinking was that these deposits led to nerve cell death and ultimately, symptoms of Alzheimer’s.
A 67-year-old retired teacher with Alzheimer’s disease pathology, overweight, sedentary, with emphysema from smoking, strokes and heart disease will progress very differently from my tennis-playing, 67-year-old attorney patient without any heart problems — even if they had the same amount of plaques and tangles.
Both for instituting proper policies and for finding cures for various subtypes of Alzheimer’s disease, the need is to align the grim and unvarying societal narrative with the nuanced and complex scientific narrative. Bridging this divide is crucial for destigmatizing the disease and for providing the type of tailored treatment that will bring success in treating those with clinical symptoms of the illness.
My patient satisfies biological criteria for Alzheimer’s, and by some measures, clinical criteria as well. The truth is, however, that had he not had an extensive cognitive evaluation, routine testing would have found him — and continues to find him — cognitively normal.
But this man is now afflicted with what another patient of mine calls the “The Doubting Disease,” the psychological consequence of any hint of an Alzheimer’s diagnosis. Is his daily forgetting normal or is he experiencing symptoms of Alzheimer’s? He is constantly doubting himself.
Physicians should not dismiss memory and cognitive complaints from high-functioning patients who appear normal. Proactive treatment is best, before symptoms appear. Decisions about further testing and treatment should be made collaboratively. Patients with a diagnosis must be educated about the vast spectrum that is Alzheimer’s and illness variability, as well as proven methods to slow progression, including diet, exercise, and sleep.
As for my patient, he and I have agreed that he will be treated, aiming to bolster his cognition, and reduce risk factors of the disease, with a program tailored for him — for his own private Alzheimer’s disease. He continues working as a successful attorney, keeping his diagnosis a secret.
Source : Nbcnewyork
