Of course there is, but, as the expression goes, “It’s complicated”. Our contention is that Alzheimer’s is more of a disease of minds than a disease of brains. Conceptually, it is two words: an eponym attached to a socially agreed-upon (but contested), medicalized form of memory and other cognitive loss. Alzheimer’s is a frame, a label, a social construct embedded in a certain cultural and historical moment that has imbued it with meaning. To truly examine the question of whether there is Alzheimer’s disease, we must acknowledge that this ‘disease’, as we understand it, has existed for just over 100 years, and will continue to change and evolve over time in human minds. Indeed, over the centuries, the phenomenon of age-related memory loss has been causally associated with witchcraft, moral degeneracy, bad blood, and a dissipation of vital energy from the brain among other factors. It is only in recent human history that we have come to associate the condition with individual brain pathology, and the progressive loss of cognitive function in multiple areas.
Of course, the molecularly inclined would say with great conviction that Alzheimer’s is fundamentally a degenerative dementia, different than aging, and the most common cause of progressive cognitive impairment in the world. This story, which has been the conceptual bedrock of the field for over three decades, has begun to weaken in recent years. Why is this so? We have come to realize the disconnection between various microscopic findings in the brain and the clinical features shown by the patient. Most glaringly, people without cognitive impairment can have plaques and tangles, and persons with “clinical” Alzheimer’s can have an absence of such features. Even people with familial Alzheimer’s disease who carry rare autosomal dominant mutations demonstrate different brain biologies and clinical presentations. In all-too-rare moments of honesty, scientists in the field acknowledge that we know so little about the true nature of plaques and tangles and their related proteins. Yet the fact that these “pathological hallmarks” clearly don’t correlate with dementia does not stop us from making massive investments in trying to cure the disease through various approaches, most of which focus on amyloid immunotherapy. In this way, our conceptualization of “Alzheimer’s” as a disease akin to polio or malaria (with a single pathogen) has proven actively disruptive, and steered us away not only from other pharmacological approaches, but also other public health approaches capable of moving the needle on brain aging (e.g., smoking cessation, improved diets and access to healthy foods, toxic exposures, opportunities for physical activity, etc.).
Moreover, we so often hear that the most common cause of dementia is Alzheimer’s, and our militaristic understanding of plaques and tangles have caused us to view “it” as a singular condition separate from normal aging that “attacks” millions of people around the world. And yet science has established that “Alzheimer’s” is actually a highly heterogeneous set of age-related conditions. Indeed, the most common cause of dementia is “mixed dementia”, which shows a variety of neurodegenerative, vascular, and other components, depending on many genetic and environmental factors that affect individuals in different ways. The fact is Alzheimer’s disease is related to aging, and despite billions of dollars being spent, there is no definitive way to distinguish someone with so-called Alzheimer’s disease from someone with severe brain aging. As such, “Alzheimer’s disease” is much more effective as a political/fundraising slogan than as a proper scientific concept. We would much more appropriately speak of “Alzheimer’s diseases” (plural) or “Alzheimer’s syndrome”.
We sometimes make the light-hearted but serious point that our conceptual dissonance about Alzheimer’s disease has led to increasing “semantic ataxia” as we have “staggered” from one disease category to another. The “discovery” (better labeled as invention) of mild cognitive impairment (MCI) in the last decade was a huge contributor to this confusion. MCI is said to exist in the boundaries between normal aging and disease. Its proponents argue that it can be diagnosed not as a disease, but rather as a condition or a risk factor. Even so, countless people now possess or are possessed by this particular label perhaps not realizing that experts can’t even agree on its definition criteria. Some people with a label may feel they have escaped Alzheimer’s disease or dementia whereas other may learn that it eventually becomes a dementia and be affected by diagnostic creep. Not satisfied with that one label, we have since invented “pre” mild cognitive impairment, “early” mild cognitive impairment, and “late” mild cognitive impairment. All the while, we were very confused about impairments of activities of daily living in these conditions. Were activities of daily living normal or relatively spared?
The process of modifying the nosological construct of “Alzheimer’s disease” has continued with the recent creation of “asymptomatic Alzheimer’s disease” or “preclinical” forms. Now, we are in an era where we use biomarkers (amyloid and tau) that, as mentioned above, may not even be reliable (let alone validated) to label people yet again and potentially medicalize individuals who are not yet clinically affected by cognitive loss. These “pre-disease” terms were originally proposed as research categories, but they are being actively pushed by the Alzheimer’s Association and commercial interests that want to make money out of diagnostic testing using amyloid imaging and eventually sell powerful drugs to people who have no symptoms. Again, the goal posts of Alzheimer’s disease shift with cultural, economic, and political forces. To frame the game as being played on the moral high ground of addressing the suffering of others often avoids the more hidden game in which a privileged group of people who are vested economically or career-wise benefit with fame and fortune.
Indeed, as this “march to progress” on Alzheimer’s continues, immoral, illegal, and irresponsible behavior walk hand-in-hand. Drug companies are fined billions of dollars for illegally promoting off label use of drugs (this apparently being part of their business plan) and doctors seem happy to prescribe them, particularly after a good wining and dining. A recent report from the Alzheimer’s Association claims that billions of dollars more invested into basic research (which itself is having enormous difficulties with fundamental issues like replication of claimed breakthroughs) will lead to effective medications that will save hundreds of billions, if not trillions, of dollars. You know that when they make these projections they imagine that the cost of this magic bullet will be zero . Magic indeed.
Ultimately, because “Alzheimer’s disease” is a socially-constructed disease of the mind and not just a biological disease of the brain, it is about far bigger issues than just Alzheimer’s disease. The Alzheimer’s industry, or “Empire” as we referred to it in our book The Myth of Alzheimer’s , has generated enormous fears in aging people by conjuring powerful images of a “death that leaves the body behind”, a “mind-robber”, and a disease that “steals the self” and generates enormous caregiver “burden”. At the societal level, it has summoned up apocalyptic imagery of demographic tidal waves, silver tsunamis, or roving bands of demented zombies to auger an economic collapse that is inevitable without a cure. In our opinion, the Alzheimer’s field has cancer envy. They want the fear, and the money, and the prestige, and the attention that the cancer field gets; yet, they seem unaware of the well-documented concerns in oncology about overselling cure and declaring “war” on cancer. Even the appellation “cancer” itself has been acknowledged as problematic due to the heterogeneity that also is present in Alzheimer’s.
Further, the Alzheimer’s industry says we must “care today and cure tomorrow” as if pharmaceutical treatments will eliminate the need for caring people and communities. This is a critical time to reflect honestly on what we have learned in the last quarter century of research. The primary lesson is that “Alzheimer’s” encompasses many illnesses –it is an umbrella term for many age-related processes that we have fundamentally miscast as a ‘singular disease separate from aging’ to the public. Moreover, we believe that the merging of familial Alzheimer’s disease and sporadic Alzheimer’s disease and the effort to instill a “politics of anguish” around the condition, which was an intentional political move made by the National Institute on Aging in the 1970s to raise funds for an organization responsible for an aging population, may have been a mistake. We have learned that as one grows older, dementia becomes more common to the point we all might be affected if we live long enough. And we have learned that hundreds of billions of dollars invested in medications has led to very little except exaggerated false promises. Perhaps this reflection should lead to a little more humility. After all, aging and the brain and human caring are complex, and, as such, simplistic solutions are likely to be wrong. The past 25 years in the field have been characterized by one promised breakthrough after another to the point we must more honestly stand on the raised heap of these failed breakthroughs and call it a huge breakdown.
Yet we are learning that there are different approaches to responding to brain aging as human communities. The words “Alzheimer’s disease” are largely disappearing in some clinical and policy circles, except perhaps in the United States (and some other wealthier countries) where the false hope of simplistic reductionistic medical approaches remain in force. Elsewhere in the world, people and organizations (such as the World Health Organization and Alzheimer’s Disease International) are focusing more on “dementia” and finally looking to prevention not through vaccinations or promises of absolute cures but rather through public health interventions and collective action on known risk factors. It seems quite clear that attention to diet, exercise, cognitive activity, and social engagement has already reduced the incidence of dementia (as evidenced by falling dementia rates in countries like Sweden, Norway, and the UK) and that there is still much more progress to be made in this area. Again, the notion that “Alzheimer’s” can be a gateway to thinking about larger societal issues that have a bearing on quality of human lives deserves greater attention.
There is hope for human beings as we age with regard to our cognitive vitality. We can create communities where people support one another in better ways. Yes, we need dementia-friendly communities as the global movement associated with this concept rightly suggests. But these communities must be able to address people with cognitive challenges regardless of diagnosis, and the movement toward age-friendly communities must both be sensitive not only to those with cognitive dysfunction but to people of all ages. Global climate change and income inequity are the biggest contemporary challenges that we must address for the health and sustainability of our species. People with dementia are at risk for both ecological and economic disaster. Elders and children particularly share that vulnerability.
So yes, Alzheimer’s disease exists as a human phenomenon that causes suffering and as powerful construct, but its utility as a research and clinical concept is now failing and beginning to transmute. The two words remain a meme in the zeitgeist because the ‘disease’ is associated with a successful strategy to create fear, promise false hope, and gain social resources for those dishonest enough to perpetuate the myth. However, new stories are beginning to win in the public space, and with those new stories can come new values, attitudes, beliefs, and practices aligned with more humane caring for persons with aging bodies and brains, not to mention better science.