Time to Look Upstream and Hold the US Alzheimer’s Association Accountable for Its Actions

The US Alzheimer’s Association provides critically important support services, education, programs, and referral services to countless individuals living with dementia, their families, and care professionals. It is making a real and meaningful difference in the lives of these people.

However, over the years, the association engaged in a series of unhelpful and harmful activities for which it was rarely held accountable. This article “connects the dots” (that are often scattered as isolated cases in research articles, books, expert opinions, and media reports) by identifying about 30 such activities.

The purpose of the article is to inform the public and policy makers about these activities in hopes that it will lead to meaningful changes in the ways this powerful organization operates. This, in turn, could enable the association to realize its full potential in better serving its constituency.

These activities include:

Promoting false hope as a major fundraising strategy by repeatedly making unfounded promises that a cure for Alzheimer’s disease is just around the corner.

Focusing primarily on ending Alzheimer’s disease while dedicating inadequate attention to several other forms of dementia. The very name of the association illustrates this issue.

Increasing the stigma associated with living with Alzheimer’s disease while using war rhetoric, "tragedy discourse" (including zombie metaphors) and scare tactics as described in the film Monster in the Mind. A more balanced and hopeful narrative has been beautifully described in the powerful book On Vanishing.

Together, the fear message – routinely coupled with unfounded promises for cure of Alzheimer’s disease – tremendously benefits the association’s fundraising efforts.

 Launching massive, well-funded campaigns, often weaponizing people living with memory loss and their families, to get Medicare coverage for failing and potentially risky Alzheimer’s drugs such as Aduhelm. Then, when Biogen stopped selling the drug, blaming Medicare for it.

Ignoring and silencing the opinions of its own scientific advisors and despite substantial internal conflict about it within the association, strongly supporting and advocating for Alzheimer’s drugs with insufficient evidence. The public expects more from an organization claiming to be “driven by science.”

Communicating unbalanced, inaccurate, and misleading views with the public and policymakers about a drug that is scientifically unsound (Aduhelm).

Ignoring leading educators living with dementia who say that to make unfounded promises about an Alzheimer’s drug manipulates people and plays on their heart strings and that doing so erodes the public trust in the Alzheimer’s Association.

In fact, leading professionals who worked for the Alzheimer’s Association for decades say that the association deliberately attempts to mislead the public and misdirect funds while exploiting the public lack of information.

Ignoring previous failed promises and keeping funds rolling in simply by hyping the next drugs in the pipeline.

For decades, the Alzheimer’s Association strongly pushed the idea that Amyloids cause Alzheimer’s disease but so far research was unable to demonstrate that amyloid build-up causes the disease.  

Related to it, the Alzheimer’s Association, in its awareness and fundraising campaigns, routinely disregards the fact that many people who have significant amount of amyloid plaque in their brain do not develop dementia while many people with no amyloid in their brains have dementia.

The association largely ignores what many scientists are saying about the Amyloid hypothesis and continues to predominantly bet on this “lame horse,” as one scientist called it. Another scientist said, the “amyloid deposition is clearly like the outcome of a car crash, but the investigator ends up looking at the debris instead of what happened to bring about the crash.” The scientist likened it to “clearing up a car crash and assuming that will prevent future injuries.”

The association supports an Alzheimer’s “cabal” that limits progress in the search for effective treatments for people living with Alzheimer’s disease and other forms of dementia.

Currently, a work group of the association are trying to re-draw the boundaries of Alzheimer’s disease while a third of the members are directly employed by industry (including pharmaceutical and diagnostics corporations) and another third have significant conflicts of interest. The American Geriatrics Society described these financial ties to industry as “wholly inappropriate.” The association does it without adequately considering bioethical concerns and the potential negative effects (such as overdiagnosis of Alzheimer’s and subjecting people to treatments with limited benefit and potential for harm). 

The fact that a significant portion of people living with Mild Cognitive Impairment will not develop Alzheimer’s disease (some people may even improve over time) is often downplayed in the association’s educational, fundraising, and advocacy work.

The association promotes the questionable idea that Alzheimer’s is a singular disease unrelated to aging despite growing recognition that it may be a spectrum disorder and intimately related to brain aging processes. A singular disease model makes fundraising easier.

In its awareness and fundraising campaigns, the association downplays the fact that the prevalence of mixed pathological diagnoses (e.g. Alzheimer’s disease, Vascular dementia, Lewy Body Dementia) is high.

The association also downplays the fact that a significant portion of people who are diagnosed with Alzheimer’s disease end up going through post-mortem brain studies (autopsies) showing that Alzheimer’s was inaccurately diagnosed.

The association receives millions of $ from pharmaceutical companies but says that there is no conflict of interest. According to the L.A. Times, during fiscal year 2023, the association received $4.9 million from pharmaceutical, biotech, and diagnostic and clinical research companies.

Instilling in the not-for-profit Alzheimer’s Association a for-profit business approach and acting as a political powerhouse in congress.

Not pursuing as a #1 priority a common sense, responsible, and ethical population-based public health / national prevention strategy and not fully acting on the fact by which “up to 40% of dementia is attributable to potentially modifiable risk factors.”  

Despite serious concerns and neglectful care in the assisted living sector where 70% of the residents have some level of cognitive impairment (40%-50% have dementia), the association has been reported to engage in limited advocacy efforts focused on polices to protect people living with dementia in this for-profit but weakly regulated long-term care sector. 

The National Alzheimer’s Association, also known as the 800-pound gorilla, doesn’t hesitate to use its power when it is being criticized and when it feels threatened. For example, the association engaged in activities that were perceived as retaliatory, vindictive, and aggressive by Alzheimer’s Association chapters that decided to break away from it.

The National Alzheimer’s Association limits innovation at the chapter level due to strict uniformity of and de-emphasis of care approaches. Organizations such as CaringKind in NYC (formerly the Alzheimer’s Association, NYC Chapter) serve as an example of the scope, quality, and far-reaching positive impact that true person-directed innovation can bring about to the lives of people living with dementia and their families. In the words of Jed A. Levine, former President and CEO, CaringKind (September 4, 2018):

 “The Alzheimer’s Association’s cure narrative that prioritizes fundraising for research over care was a driving force when CaringKind disaffiliated from the National Association in 2015 and returned to our roots as an independent organization.” He added, “Research is certainly important. But we cannot forget those who struggle with the challenges of dementia. CaringKind never will.”

The association insensitively banned a leading national advocate living with dementia in ways that were described by him as hurtful. The advocate said that the association “threw me under the bus and ran me over multiple times.” As I’ve written about this incident, a greater sensitivity is expected from an organization serving people living with dementia.

In accordance, Kate Swaffer, co-founder and co-chair of Dementia Alliance International (DAI), wrote about the collective need to demand inclusion of individual advocates who are living with dementia and that they will no longer be ignored and silenced. This expectation is consistent with a person-directed approach described as authentic partnership with this population.

While growing, only a small number of people living with dementia (such as the late Dr. Richard Taylor in his powerful film Live Outside the Stigma) dare to publicly criticize the association’s practices. In the words of one advocate living with dementia who wrote me: “It is useless to direct our energies to the association and they are just too powerful with their funding and ability to kill off anyone who dares to question them.”

The association has made threats against individuals and organizations who shared and posted my journal article Trust at Stake in which I have criticized the association’s unbalanced mission.

One advocate living with dementia shared how the Alzheimer’s Association used several of her colleagues as its “golden child” only for these individuals to experience the eventual let-down, depression, or loss of self-esteem when they get replaced by the newer “golden child.” The way she described it was that the association can “chew up and spit out people like watermelon seeds.” She added, “Not everyone can recover.”

Related to it, several other people living with dementia have shared their expectations regarding thoughtful, professional, and respectful succession plans from advocacy roles in organizations dedicated to serving this population.

In closing, for many years, the Alzheimer’s Association appears to operate under the assumption that the public and policymakers won’t notice how it gets away with it all. The association seems to assume that people won’t connect the dots and become aware of the massive opportunity costs these practices exert on people living with dementia, their families, their community, and our society. 

After following the Alzheimer’s Association’s practices for a couple of decades, I am left wondering: 

When will we stop watching others pulling an “endless parade of people out of a rushing stream” and start looking upstream to see how the Alzheimer's Association repeatedly helps push them in?

Eilon Caspi, BSW, MA, PhD

Acknowledgments

Daniel George and Peter Whitehouse for their helpful suggestions for improvement of this article.

They are authors of the following books:
American Dementia: Brain health in an unhealthy society (2021):
https://www.amazon.com/American-Dementia-Health-Unhealthy-Society/dp/142...

The Myth of Alzheimer's: What you aren't being told about today's most dreaded diagnosis (2008):
https://www.amazon.com/Myth-Alzheimers-Todays-Dreaded-Diagnosis/dp/03123...