The Dementia Epidemic: Medicalizing Sickness, Maximizing Profits, Harming People

"When I was younger, I could remember anything, whether it had happened or not; but my faculties are decaying now and soon I shall be so I cannot remember any but the things that never happened.”-Mark Twain

“I fear that a view that talks too much about internal biological processes makes people passive victims of their medical disorder which takes away their control….  Forgetfulness, lack of motivation, noise intolerance, social anxiety, low mood, distractibility and concentration difficulties are all part of the human experience.  Each of these have become increasingly pathologized….” - Dr. Suzanne O’Sullivan, neurologist

Dementia is a terrible and far too common disease, one that is escalating in the modern age despite promises of innovative testing and treatment.  The myth of dementia is that by medicalizing it—creating numerical diagnostic tests and drugs to define and treat dementia—we will reduce disease burden in the population and help those suffering from cognitive decline.  None of this is proven to be true; its medicalization is both deceptive and harmful, even if alluring to those suffering from the disease. 

This is because dementia is a lifestyle illness; areas of the world that eat well, are fit and communal, and stay away from environmental/pharmaceutical/food toxins tend to have little to no dementia. While an investment in lifestyle interventions, as well as non-medical financial succor for patients and families with dementia, would improve outcome, the myth of medicalization has only increased cost of care and placed dollars in the pockets of doctors and industry, not into the hands of those who need it most: patients and caregivers.  In many ways dementia exemplifies that trajectory of our healthcare system, with bloated spending and unrealistic interventions powering a deep dive into medicalizations, not care.

Background

In 1965 Congress, under the leadership of President Johnson, passed the Medicare law.  Fiercely opposed by the AMA, which had become the powerful hegemon of the entire healthcare landscape and inaugurated a fierce advertisement campaign to stop “socialized medicine,” the law passed only after it granted extraordinary concessions to organized medicine, especially with regard to compensation for specialist doctors and their unassailable authority to order tests and procedures and set rates in ways that most improved their bottom line.  If Medicare saved countless lives and enabled elders to be forever secure in their health, it also broke the bank when it came to healthcare spending by opening the floodgates of high-priced corporate specialization.

In 1965 America spent $40 billion on healthcare, or $200/person each year.  The average age Americans lived to was 70, and that number had been increasing as more children survived thanks to a better food supply and enforced sanitation regulations.  Survival of younger people drives population longevity up even if people are not necessarily living longer lives, and too, with young people dying much less than even 30 years prior, more people would grow old, which further nudged longevity up while also increasing the number of older patients.  Hence, after 1965, due to factors more tied to public health measures than medical technology that prevent young death, longevity slowly increased, peaking at 77 a quarter century after Medicare’s implementation.

At the time of Medicare’s birth, the notion of dementia had not yet exploded onto the geriatric scene; in fact, dementia was not recognized as a disease in 1965.  People talked about senility of aging, or memory loss of aging, but those were all considered normal as people aged, not a measurable definable disease.  In America people had always become very old; the average age of the founding fathers not shot (Hamilton) or killed by a doctor (Washington) was in the lower 80’s, higher than the overall life expectancy in 1965 or even today.  People who survived childhood or youthful deaths (especially women having babies) always lived long in this country, it’s just we didn’t diagnose them with dementia. With increased survival of the young and the consequent increase of the older population, memory loss fell onto the medical radar, and dementia made its appearance not as a natural consequence of age but rather as a definable disease.

Now dementia is one of the most potent drivers of healthcare cost and chronic illness.  It is estimated that 7 million Americans suffer from some form of dementia at any given moment, with a cost of 800 billion dollars a year, only a portion of which ($230 billion) is paid by Medicare.  Not only were we seeing more elders dotting the landscape but too, as Nortin Hadler reminded us in his book Rethinking Aging, the medical community has medicalized all the normal ramifications of age, including memory loss, thus putting dementia and even pre-dementia in the scope of medical profiteers.

Indeed, dementia is different than mere memory loss; it is life-altering for the patient and family alike, something palpable and horrific.  But by medicalizing it and transforming it into a numerical diagnosis (we diagnose it with a poorly validated memory test based on a numerical score invented by drug companies) that can be “fixed” with doctor visits, tests, and drugs, we are dehumanizing it, deflecting our attention from patients and their families and sewing a very expensive and dangerous deception that tests and drugs will fix them.  This, then, is the pernicious myth of dementia, its medicalization, which revved up in the past 30 years once drug companies saw profit in its identification.

The idea of diagnosing and staging dementia through numerical scales only occurred when pharmaceutical companies concocted potions to “treat” dementia.  As we will see, at the time of Medicare and for several decades after, ascertaining the presence and extent of dementia in an older individual, especially when conflated with normal memory changes of age, fell to the doctor, patient, and family.  Physician clinical acumen, notably primary care doctors with a strong relationship with their patients, and caregiver/patient self-assessment defined dementia and progress.  But once Big Pharma and its academic medicine allies (along with the pharmaceutically-financed Alzheimer’s Association (AA) and the American Academy of Neurology, which sought a disease to help prop up its member doctors, which we describe and document in our book Return to Healing) realized that clinical assessments would not sell drugs, they invented several memory scales (including a 70 question test used in most pharmaceutical company studies, a 4 point improvement felt to be proof of drug benefit) to more “scientifically” define and stage dementia.

As with many numerical diseases, clinical dementia—what doctors/patients/families perceived to be true—dissolved within the numerical jungle embraced by drug companies and neurologists.  A patient could be doing well, but if the numbers said otherwise, or visa vera, then the patient/family/doctor fell prey to numerical absolutism; they were wrong, the number was right.  And so, neurologists prolifically tested older people, especially those with memory problems, and an epidemic took shape, one in which new drugs and tests and more visits defined its scope and promises.  Even today, dementia tests, most of which are barely validated, are part of the quality indicators on which doctors are judged.

But all this testing, all these specialty visits, all this drugging only creates a smoke stream that obscures the true determinants of dementia risk and its treatment: lifestyle.  None of the miracle drugs has done more than improve measurable scales, not what doctors/patients/caregivers perceive.  As Dr. Suzanne O’Sullivan states in her wonderful new book The Age of Diagnosis: How our obsession with medical labels is making us sicker: “Early dementia diagnosis may be at a record high…but there is still no treatment that will stop the disease from progressing.  The fate of a person given an early diagnosis of dementia cannot be changed.” 

And that is assuming the numerically-derived testing is even accurate, which it is not.  A false-positive test can, O’Sullivan states, persuade a well patient with perhaps some memory issues to believe they have dementia and act as such.  She discusses that another new measurement tool, a blood test APOE-e4 that is alleged to predict who may have a family predisposition toward dementia, is similarly inaccurate, and that people “who test positive for the dementia gene might be weighed down by the thought of impending dementia entirely unnecessarily,” because most won’t develop dementia, especially those who focus on healthy lifestyles which seem to be the most salient predictors of who will get dementia worldwide.  But all of these promises that we can diagnose the disease through testing, and that we can treat disease by improving test scores, has increased cost and hope without any evidence of efficacy.

The diagnostic swamp of testing expanded more once Big Pharma concocted drugs to improve a protein called amyloid, a protein more common in the brains of people with dementia than those without the disease.  Amyloid blood tests and PET scans—collectively which cost $10,000 just to get started—now define dementing disease and treatment.  PET scans have been famously inaccurate when it comes to their value in detecting dementia; older studies showed that over 50% of people with a positive PET scan won’t develop dementia, and most people who will develop dementia have a negative PET scan.  Newer drug company studies demonstrate an 80% accuracy rate of PET scans in people with some memory issues, but those studies are tainted by the fact that they do not adequately study healthy older people many of whom have positive PET scans, as well as being limited by “referral bias” which means that most people who elect to join studies of memory loss likely have some personal concerns about memory loss, thus preventing us from truly assessing the prognostic accuracy of these scans on elders without cognitive issues.  A simple fact of their inaccuracy lies in a little discussed statistic: while 30% of all people over 70 will have a positive PET scan, only 5% of people over 70 will develop dementia, making the predictive ability of these scans very low.  As Dr. O’Sullivan states: “Every single ordinary human experience is reflected in some change in the brain.  Neural correlates have been found to people’s preference for certain chocolate brands.”  In other words, using a scan to ascertain some hidden truth in the brain is wrought with severe limitations.

Not only will this new leap into technology deceive many people who have some normal memory loss of aging into believing they have or will develop dementia, but it has instigated an expensive barrage of testing and drugging that may well do far more harm than good. As with much of our healthcare system, the myth of dementia medicalization shifts money away from patients/families to doctors and industry, taking needed money away from where it is needed most: lifestyle interventions, daycare centers, caregiver support.  The cost of care has continued to increase after 1965, but outcomes are if anything worse, and those who truly need real help do not get it.

Dementia is but one diagnostic morass that is escalating our nation’s healthcare spending without producing palpable benefits.  How high is the cost of care now?  In the year 2000, 35 years after Medicare, America spent $1.3 trillion on health care, or $4,630 per person each year, spending that increased consistently every year after 1965 (when we paid $200/person for medical care), with more money sliding into the pockets of specialists who perform procedures, and into the hands of drug and device companies who work with these doctors to create an illusion that all this money improved health and longevity.  Yes, Americans lived longer in 2000 than in 1965, 77 years on average instead of 70, but that was primarily thanks to fewer young deaths and the ramifications of their long survival, with many more older people dotting the demographic landscape translating into statistically longer longevity.

But 25 years later, in 2025, with more specialization and high-priced drugs and procedures and promises, longevity has bounced up and down but largely not changed (still about 77 years, same as the year 2000) even as our spending on healthcare has skyrocketed to $5.3 trillion, or $15,500 per person.  The result of all that spending has not increased longevity—we lag far behind most of the industrialized world that doesn’t spend nearly as much on healthcare and even farther behind areas of Blue Zones that spends almost nothing on their health—but has led to more chronic illness, more medical epidemics, more measurements as a definition of disease, more drugs and procedures and specialists.  And now dementia, not felt to exist in 1965, and being a moderate issue in 2000, is one of the most crippling and expensive diseases in America.

Dementia is ascribed to many causes, but no one quite understands its etiology or even the process that leads to rapid brain death, which is what defines all dementias.  It is not merely memory loss of aging, or even the benign senility described by doctors in 1965, but a profound disruption of cognition, of thinking, of control.  Many possible triggers exist, and observational studies tie dementia to anything they can correlate with it, but we still can’t delineate the true cause.  Perhaps it is our diet, microplastics, heavy metals, or overmedicalization.  Maybe our drive to dramatically lower everyone’s cholesterol, sugars, blood pressure spurred a cascade of brain cell death, as our aging brains need cholesterol and pressure and sugar.  Maybe it’s polypharmacy.  Maybe it’s a virus, or something we still have not identified.

But if our medical system can’t find the cause of dementia, that hasn’t stopped them from sewing a narrative otherwise.  The $250 billion we now spend medically on dementia is not meant to help caregivers, or subsidize exercise programs and daycare centers, but instead to pay specialists and radiologists and industry to push unverified tests and procedures and drugs on patients and their families, to create a condition whereby the only help those with dementia have access to are medicalized distractions and false promises.

It should be evident from the $800 billion price tag of dementia reported above that $570 billion is not covered by our insurance companies—which only pays for specialist visits and tests and drugs—and thus is a burden financed by the disease’s victims, mostly caregivers who will receive no help from insurance for a nearly impossible job.  If exercise and diet are most efficacious at preventing the onset of dementia and mitigating its progression, if daycare centers and caregiver support are what is most crucially needed by patients and families, none of that is in the scope of our healthcare system’s lens.  Only tests and drugs, labels, doctor visits, promises.  That is the price we pay for the myth of medicalizing dementia.

Early Promises

A little before 2000, perhaps closer to 1995, when specialization and high-priced drugs and medical labels were only starting to take off, and when the healthcare system cost about $4500 a person, I started my first job in a medical practice. We primary care doctors were not as rare and almost extinct species back then—almost half my residency class went in to and remains in primary care, whereas today even one person entering true primary care a year is unusual—and the vector of spending had not yet shifted to specialists and drugs.  I worked in a Portuguese community and yes, we did see some dementia, but it was not alarming in either scope or severity, with most people in the community caring for their own elders and seeking gentle treatments for memory loss, not drugs or tests or specialty visits.

But drug company prowlers were a common presence in our office, and soon after I started they peddled a drug called Cognex, something that increased brain acetylcholine levels and was touted as a dementia cure.  I was asked to speak at our local hospital about it along with the town’s neurologist.  But when I read the drug company study that extolled Cognex, the drug did not seem effective at all.  It did improve some contrived memory test minimally for a short period of time, a test I later learned was invented by the drug company that made Cognex, but caregiver score—how many caregivers or patients felt they were better with the drug—was no different with drug or placebo, about 30% in both.  I said as much in my talk, but the neurologist used drug company talking points to focus on the drug’s ability to improve the contrived test score by 4 questions out of 70 in 39% of people taking it, whereas placebo improved the score in 30% of people.  That 9% advantage did not translate into a better caregiver score or any palpable clinical benefit noticed by anyone, and it shrunk to 0% by the end of the one-year study.  But everyone in that room flocked to the neurologist, excited by his promises of cure, especially when he used deceptive relative numbers (“Cognex decreased dementia by 25% compared to placebo,”) that wowed the audience.

That was my first lesson that specialists who promise cure with drugs and who focus on numerical measurements and not clinical reality are more appealing than naysayers like me who are more honest.  Promises of cure with pills and tests and visits, increased specialization of approach, all of that took over from the more sensible approach I had first known in that Portuguese community.  It was no different than the patent medicine swindlers of long ago: promises often trump harsh realities, quick fixes are more palpable than the hard work of lifestyle change and caregiver efforts.

The proliferation of drugs that followed Cognex and in many ways mimicked it—from Aricept and Exelon, to Namenda, to combinations of them—has now overtaken the landscape.  Studies show them to be no better than Cognex, entirely ineffective compared to placebo when true barometers of cognition are used.  Sometimes they improve behavior with dementia, sometimes they make it worse, but any memory improvement is likely no more than that of placebo, just a tiny and unrecognized blip on a memory test for a few months in a few people, and these drugs have side effects that are common and often debilitating.  But they are being prescribed by neurologists at a tune of billions of dollars a year.  And added to that price tag is the cost of neurologists and academic memory centers focused on dementia, demanding expensive testing and visits to initiate and monitor drugs.  Coincident with all of this has been a rise in the number of people with dementia, not a reduction, and a worsening of dementia symptoms and progression, not a decrease.  The cost, however, has skyrocketed, landing in the pockets of neurologists, pharma companies, and x-ray facilities, all due to the medicalization of a disease that we still do not understand but which we know is best treated with lifestyle and with non-medical financial help.

The deception of dementia is even deeper than that. We now precisely label you with a type of dementia—Alzheimer's, Pick’s, Lewy Body, frontal-temporal—although the demarcation lines of brain cell death cannot be so precisely defined.  That is a hallmark of corporate specialization: precise definitions of disease that seem more scientific than they are, and which don’t impact treatment. Virtually every drug company study does not extend more than a year (when the small numerical advantage evaporates) and not a single study shows that neurology visits and frequent scans help mitigate or slow or even prevent dementia.  With all this spending, with all these promises, with all this precise labeling and specialization, there is more and worse dementia, not less, and both the medical and non-medical (uncovered) costs are escalating, as is the extent of human suffering and economic loss completely ignored by our technological medical system.

The Escalation of Medicalization

Recently a very wonderful couple told me that the wife would be seeing a “memory expert” at the University of Maryland.  About 70 years old, she still drives and works and cares for herself, but she has become gradually more confused over the past few years, more befuddled at times, something that seems related perhaps to anxiety or lack of concentration, but which her conscientious and loving husband fears is dementia.  I told them we can’t diagnose or even treat memory loss or dementia, and instead we will target her anxiety and concentration issues as well as emphasizing important lifestyle changes.  If this was dementia, I said, time would tell, and the fact that it seemed to be progressing very gradually and gently over years was a good thing.

The academic “memory experts” they visited, starting with their nurse practitioner who ordered the first $10,000 of testing, told them (contrary to what I suggested) that we have tools to diagnose dementia and then to very precisely treat it.  They promised that if their “experts” unearthed the cause at this early stage and initiated treatment that she might not progress or ever develop life-changing dementia symptoms. 

It all sounded so caring, so scientifically thorough.  And who could argue with an academic specialist at a major respected medial school who promised a precise diagnosis and cure to a frightening disease?  The problem is that compared to 1965, or even to 2000, academia now rested in the hands of industry.  The AMA’s cooptation of medical education and medical practice, which started in 1911 and accelerated after 1965, depends on industry to fuel it: corporate money to drive medical research and finance/write medical articles and to pay the salaries of academic physicians. And today, those corporate funds largely flow from drug companies to academic medical centers, whose studies performed by academic doctors finance the specialists and CEOs of large university medical centers.  The renowned specialist doctors at this prestigious medical center memory center were deeply tied to industry, and despite their “expert” status, and despite their promises, I remained skeptical.

The new buzzword within the dementia medial community (and as we will see later, the cardiology community too) is amyloid and that is what these “experts” explained to my patients. My naïve approach to dementia—lifestyle changes, reassurance, addressing issues like anxiety and concentration and polypharmacy—was backwards they inferred; science now allowed them to dig into the brain, find the cause, and stop dementia in its tracks.  “We just have to determine if she has amyloid and, if so, to remove it.”  So simple and reassuring, so scientific, so modern-age!

Amyloid is a protein that can become dangerous if it grows unfettered in the wrong places.  Or so we think.  It is present in the brains of many older people—their hearts and other organs too—and seems to be more prevalent in the brains of those with dementia than those without it, although drug-company academic researchers have not explored enough brains in those without dementia to state this fact unequivocally.  Before the medical world created drugs to “treat” brain amyloid, few doctors felt inclined to measure it.  But now, thanks to PET scans and expensive labs tests, we can tell a patient—as these “experts” told my patient—that they can find people who have early dementia (because their brains will have amyloid) and treat it by using novel drugs to dissolve brain amyloid.

As we already discussed in a prior blog, that is the theory, hardly something that has been proven.  Yes, as we noted, more people with dementia may have abnormal PET scans and amyloid tests, but many people with abnormal tests won’t get dementia, and many people who will get dementia won’t have abnormal testing.  What’s most concerning is that we don’t know the role Amyloid plays; we only know that it seems to correlate with dementia in some people.  But is it causative?  Does amyloid become tangled in the brain and instigate dementia by directly killing brain cells?  Maybe it proliferates as a result of what causes dementia—a extraneous residual from the unknown process that drives brain cell death—but does not actually cause it.  Maybe it is created by the brain to protect it from what is causing dementia.  Maybe it’s a red herring.  We just don’t know.  Just because it’s there does not mean it causes dementia.  It may, but we will need many more years of study and a host of non-pharmaceutical long term randomized trials to know.  And yet, the experts have already decided: amyloid is the cause, it is measurable, and now it’s treatable.  This is the flaw of modern medical science; we can create an entire industry to create unproven “facts” we use to sell drugs, to medicalize a disease far beyond what science and our own understanding should allow, to create and then declare war on fabricated epidemics.

The treatment for brain amyloid, as we showed in our other blog, is a drug that costs about $50,000 a year and requires tens of thousands of dollars of surveillance testing annually while it is being given.  Initially it failed FDA approval because of several common devastating side effects (including frequent brain bleeds) and no evidence of efficacy.  Yes, it removed amyloid, but it did not seem to improve cognitive issues and it led to strokes through bleeds.  And so, after the FDA rejected the medicine, the drug companies extended their study, found a tiny improvement in the 70-question test among those taking the drug (even without any improvement in caregiver score), and shuffled the FDA’s staffing to achieve approval.  Now we have a drug that removes amyloid and so the “experts” are insisting on early testing and treatment, with promises of cure and total whitewashing of the severe and life-altering side effects and the lack of proven benefit other than lower amyloid scores an a meaningless blip on a drug-company memory score in a few people.

We have created a multi-billion-dollar industry in measuring something that may or may not be relevant or even predictive, whose removal may cause far more harm than good, and which has no evidence of long-term efficacy.  Before doing the hard work of determining if this drug is at all beneficial, before determining its true harms over many years including the ramifications of bleeds in the brain,  before even fully understanding the role of amyloid in dementia, we have financed a leap into the murky waters of numerical medicalization, promising vulnerable people something that is perhaps deceptive, is clearly self-serving, and which likely will cause harm at huge financial expense to society.

The cost of medicalization

The Amyloid leap, both in the brain and the heart, is certain to enrich many people.  It will escalate cost of care dramatically and perhaps help a few people, something we cannot possibly know now.  Will it cause massive harm?  Will anyone taking these drugs who watch their amyloid melt away notice any cognitive improvements?  Will we scare thousands of people without dementia who have amyloid into believing they have or will get dementia, that they need dangerous/expensive drugs and endless surveillance for a phantom diagnosis, a diagnosis that will escalate their anxiety and decimate their hope?  Medicalization comes at a steep price, as dementia tells us.

Without a doubt all of this technological “expertise” will lead to more drug ads, more demands for specialization and testing, more drugs, more harm.  The reason that people on these drugs must get regular CT scan is that they bleed often.  What if they are already on blood thinners, which cardiologists demand of all patients with afib?  How do other medicines interact with these new drugs; will they increase bleeding risk, or perhaps drive other side effects?  The drug company studies don’t answer any of these questions, but that does not stop our “experts” from promising unheralded success from a deep dive into dementia medicalization.

The greatest tragedy of all this is that we are drifting even farther away from what those with dementia really need: lifestyle and caregiver support.  We know this from many studies.  Exercise, diet, stress reduction, sleep, communality, and brain exercises all help prevent and slow dementia, not drugs.  We don’t need tests for that, nor should such treatments be reserved only for people with a dementia diagnosis since these interventions are beneficial for all elders.  But as our medial society finances the dangerous dive into shark-infested medicalized waters, as it pays for all those who seek to make promises and to reduce a complex disease to facile numerical measurements, it turns from those with dementia and their families and rewards industry and doctors instead.

Dementia, then, tells us a lot about our healthcare system, one whose cost escalated from $200/person in 1965 to $4000 in 2000, to $15,000 today as we have become sicker and more dependent on unproven technology.  We are not living longer, we have more disease, we are overtreating everything and reducing all disease to numbers that can be “cured” with drugs and procedures.  But we are not healthier, just the opposite in fact.  And we are turning our back on the true determinants of health like lifestyle and non-medical support.  We may never be able to change a system that is fueled by deceiving people into spending money for what best enriches doctors and industry, but we can alter our microenvironment, ask tough questions, embrace approaches that we know work, even if they are not as glamorous as finding and melting amyloid or improving a bit on a convoluted memory test.  The money is pushing us down a precarious precipitous, but we as doctors and patients can find a gentler and more effective path through the woods.