How do you begin to write about the dreaded Alzheimer’s disease in a way that’s informative, absorbing, and, dare I say, entertaining to the reader? The only thing that comes to mind is the hilarious 1970 movie, Where’s Poppa?—so-named for the question a quirky, demented mother (played by Ruth Gordon) incessantly asks her son Gordon (George Segal). Finally at his wits’ end, Gordon breaks his promise to his long-deceased father and commits her to a nursing home. Spotting an old man equally lost, Gordon brings them together, and as they stand looking at each other he says, “Mamma, here’s Poppa.” Filmgoers left the theater smiling, perhaps with the hope that the two might live happily ever after.
Yet most of us have seen the reality of the aging brain afflicted with dementia, where there is very little joy for the victim or those closest to him or her. What kind of relief is there, not only for such a condition, but for the fear of contracting it that almost everyone past a certain age harbors, especially those with family histories of Alzheimer’s disease? It’s my opinion that the medical establishment, which has an inherent conflict of interest between financial gain and societal well-being, shouldn’t be allowed to make this determination on its own.
Our brains, while similar to those of other primates, are highly specialized in developing a capacity that allows contemplation of self, along with the ability to conceptualize and then communicate the most abstract ideas—including fear of our ultimate demise. With all of the exquisite capacities of this unique organ come problems. Its efficiency tops out quite early in life, starting a slow decline after the peak of fertility as the part of the brain that incorporates new information starts to actually shrink, slowly at first and more rapidly as we age. Antagonistic pleiotropy is the model that places this process in the context of evolutionary biology, whereby the selection process that dictated the energy devoted to the young human brain also defines its decline (called “senescence” or biological aging).
While the “selfish gene”—referring to Richard Dawkins’ metaphor for the gene-centered view of evolution—may not care about dementia, we individuals sure as hell do. We care so much that we obsess about the name we can’t recall of a person we just met an hour ago, and fear that we’re about to embark on the slippery slope towards becoming lost in a complex world our genes could never have anticipated. What the gene-centered view also never anticipated is this thing called culture, its momentary status defined by the spirit of the times, and all of the elaborate and unrealized ways our lives are defined by it. Our particular Zeitgeist seems to be defined by the quest for prestige and power, accompanied by the accumulation of wealth, which affords us a feeling of control over our health and well-being.
Our selfish gene also never anticipated language, and its current incarnation where words have taken on such a power that finding the exact one for a given use is a highly remunerative profession. This applies to both commerce and another human artifact, politics. Thus the name given to a law that deprives us of our inherent rights is the “Patriot Act.” More recently we have the Patient Protection and Affordable Care Act (PPACA, abbreviated as ACA). The name of the law tells us it provides protection and caring for the sick, and affordability for all. It’s also called “Obamacare”—so branded by its critics and since co-opted by its proponents—and even more generically, “the healthcare law.” In a sense the myriad monikers are fitting for a law so voluminous that, in pushing for its passage, Speaker of the House Nancy Pelosi said, “we have to pass it so that you can find out what’s in it.”
There is a single element of the ACA related to aging and memory decline that I have explored extensively (references and documentation are available at my website). Other than being of Medicare age, having experienced the long decline of dementia of close family members, and knowing scores of people in my same age group, my training is in psychology, including advanced public health and epidemiological studies. Not having pursued a career in the profession, however, has freed me to be an outsider, to assume the role similar to an ombudsman in evaluating institutions inherently blinded by group affiliation to their own excesses.
These excesses in the area of dementia in aging have consequences to our most expanding demographic, including the vast majority who will never get Alzheimer’s. The commercialization of cognitive impairment is best illustrated by articles and popular books offering techniques to prevent it, such as The Alzheimer’s Prevention Program: Keep Your Brain Healthy for the Rest of Your Life. The author, Dr. Gary Small, is a highly respected professor of psychiatry and aging at the University of California Los Angeles and the director of the UCLA Longevity Center. I viewed his recent lecture to a packed hall at UCSD where he elaborated on his Alzheimer’s prevention program. What a promise: to avoid the dreaded brain disease through diet, exercise, relaxation techniques, and so on. If only it were possible!
There are real problems with this approach—a departure from the scientific ethos that had evolved over centuries of searching for truth, often at great personal sacrifice. When faced with the intractability of the ravages of aging, specifically the universal decline of memory, even those in the highest strata of medical science such as Dr. Small will now market a book that includes an unproven program for prevention. Selectively citing from the thousands of studies every year, he forms a narrative that supports his set of comforting illusions that resonate with the public’s natural desire for a longer, more vibrant life.
This brings me to the ACA, which has a provision that those who avail themselves of a procedure called the Medicare Annual Wellness Visit shall be evaluated for cognition. This means that if, in the opinion of a primary care physician or his or her assistant, there’s an indication of memory decline greater than the norm, this will be noted in the patient’s records along with possible referrals. This assessment not only can be done, but must be done according to the law, with no permission required of the patient.
My objection is that this assessment can be the first step on a path towards delivering tens of millions of older individuals, many of whom are coping quite well with aging, into the waiting arms of those who would treat them with nostrums that may or may not have any meaningful benefit, and that could have adverse psychological effects. The problems with this assessment requirement are best described in the following statement from an extensive review of Mild Cognitive Impairment (MCI) published in Dialogues in Clinical Neuroscience in 2004:
Although clearly valuable as a research tool, it may be debated whether physicians in clinical practice should consider a diagnosis of MCI for individual patients. Because MCI is a heterogeneous entity comprising a variety of neuropathological and psychiatric disorders, and because dementia is not an inevitable outcome, the term may carry too little prognostic and diagnostic weight to legitimize its widespread use on a case-by-case basis. Furthermore, the lack of universally agreed upon criteria and the public’s unfamiliarity with the concept could result in increasing uncertainty, anxiety, and misunderstanding.
This difference in usage between research tool and clinical procedure is rarely discussed among non-professionals.
The earliest decline in cognition is in the incorporation of random information such as names, places, or numbers that have a tenuous relationship to conceptual memory, which is deeply entrenched. These isolated signs of cognitive decline say little about the ability of the individual to function or even the prognosis for future dementia. In a personal communication with UCSD neurological researcher James Brewer MD, PhD, I shared my own experience of being tested for this condition. After disagreeing with some of my conclusions, he wrote: “No need for a MoCA (a standardized test of short term memory). Your engaging writing skills are excellent evidence of successful cognitive aging (complexity of journal entries is part of what has been used to characterize individuals in the Religious Orders Study).” He was referring to an ongoing study of aging and cognition among Catholic priests, nuns, and brothers living in different parts of the United States.
So our ability to preserve complex thoughts and then expand on them is a different and more meaningful attribute than recalling isolated words. Even so, there certainly are neurological diseases that cause severe memory loss. While there is presently no cure or even treatment to postpone the severe stages of these diseases, it’s certainly feasible that such could be developed—and there are countless talented scientists like Dr. Brewer who should be commended for their dedication to the task. I highlight the normal decline of memory in aging, however, because there is a dearth of those who defend existing coping mechanisms that preserve well-being of those elderly who choose it. For those in the early stages of one of the degenerative, irreversible neurological conditions, this could only be a temporary amelioration of the emotional effects of the disease, but coping mechanisms of trivialization or denial—leavened by humor—should be an option left open to the individual, rather than negated by government policy.
Let me be clear: there are doctors who form relationships with their patients where cognitive assessment is just a part of what one physician described as the “art and science of medical care.” Adviser, confidante, conduit of treatment to preserve life, health, and safety—this is the ideal relationship that is in no way aided by the ACA requirement. Moreover, a rare, abrupt drop in cognition should certainly be referred for immediate follow-up, as treating such an acute event overshadows the potential harm of this mandate for the vast majority of those with degenerative or normal memory decline.
My position should likewise not be confused with an earlier medical paternalism, where doctors withheld the truth about the severity of a patient’s prognosis. But what I describe could become just as inexcusable, the physician imposing his or her diagnosis without the patient knowing that a condition is being evaluated. The simplistic, one-sentence mandate in the ACA—“clinicians must assess individuals aged sixty-five and older for cognitive impairment as part of their annual wellness visit”—has potentially harmful emotional consequences and should be allowed to stand only after open discussion. This article only identifies the problem; finding a solution will take serious consideration that must include input from the aging patients, with the outcome adhering to the ancient rule of medicine, “first do no harm.”
The initial step in dealing with this issue has to be transcending vitriolic partisan sound bites over the ACA in general, and exposing the spinmeisters who transform words into emotional triggers to arouse either fear or hope in their target audience. The Democratic Party, with cooperation from the medical-pharmaceutical industry, decided to include “affordable” in the name of the healthcare law to preempt the reality of its full cost and to obfuscate the cultural transformation inherent in the redefinition of how people deal with sickness, aging, and death. With the cooperation of our short-attention-span media, this most profound legislation became just another big game in the ongoing rivalry between Team Conservative and Team Liberal.
Sound bites have to be universally recognizable, and elicit an emotional response. So words such as “iatrogenic,” meaning “harm done by doctors and medical treatment” have become obsolete. This word should not be limited to the adverse effects of pharmaceuticals or the rampant antibiotic-resistant bacteria that cause thousands of deaths in hospitals, or even the malfeasance of professionals. It should be a term, a rubric, under which people evaluate the full societal effects of medical advances and treatment. The legislative process of the ACA was not divisive as a symptom of our rabid partisan divide, but was exacerbated because a reasonable discussion was displaced by what was construed as a battle between enlightenment and ignorance, between the communitarianism of universal healthcare vs. selfish free-market individuality.
My aunt Lena, who died last year at the age of 109, may have visited a doctor a dozen times in her life. She didn’t have yearly examinations but did get quick treatment for shingles that prevented chronic pain, and she would have gotten the vaccine had it been available. While her sister, my mother, did start to show signs of dementia at about the age I am now, Lena remained sharp into her second century, even playing an invented game of three-handed bridge with my wife and me. But finally, in her last years, her memory started to go. When I last saw her, in spite of not knowing exactly who I was, she knew her feelings towards me, and she was perfectly able to express them without need for words. She and the others in the assisted-living facility, if evaluated by a physician, certainly would have been assigned a Medicare billing code, with follow-ups scheduled at regular intervals. Aunt Lena would have enjoyed the visit, but she would have had the same pleasure from anyone with a good heart who dropped in to chat. And if a doctor felt obligated to treat her condition, it’s hard to imagine it would have made anything better; she was one of the lucky few who died peacefully in her sleep, with what would have to be described as a profound stage of dementia.
To improve healthcare we, as a people, a country, and a species—whose evolution never included individual perpetual thriving—must consider the ACA as it reflects our very humanity, which, whether we like it or not, is limited in duration no matter how much medical care we avail ourselves of. Over the course of history, we have discovered ways of dealing with the individual pain of existence, whether through transcendent belief, political ideology, or yes, even humor. No law that impacts these deep cultural pathways should go unexamined.
At this point no doctor can prevent memory decline, or the other signs of our inherent mortality. We, as citizens, must find a way to view medical science with neither unwarranted reverence, nor denial of the benefits that have come from such knowledge. We must look with reasoned skepticism at all of the unarticulated assumptions that have accrued with medical advances, and learn to accept, each in our own way, the reality of our transitory existence on this earth.