Trust at Stake

by, Eilon Caspi, ChangingAging Guestblogger

Woodcarver: Eilon Caspi
Photographer: Jason R. Campbell

Truth is like a vast tree, which yields more and more fruit, the more you nurture it. The deeper the search in the mine of truth the richer the discovery of the gems buried there, in the shape of openings for an ever greater variety of service – Gandhi

I strongly support efforts to cure Alzheimer’s disease and other forms of dementia. These scientific breakthroughs would bring tremendous relief and hope to millions of people currently living with these conditions and many more who will develop them in the future.

It is estimated that 5.5 million Americans of all ages were living with Alzheimer’s disease in 2017. By 2050, the number of people age 65 and older with the disease may nearly triple to a projected 13.8 million, “barring the development of medical breakthroughs to prevent or cure Alzheimer’s disease” (2017 Alzheimer’s Disease Facts & Figures, Alzheimer’s Association). Such sorely needed breakthroughs would also bring great relief to millions of family members and friends who currently support and care for these individuals.

However, there is an increasing recognition among a growing number of experts that these efforts must be done in a more responsible, balanced, transparent, accountable, and ethical way than has generally been done to date. It is imperative to be truthful with the public about the current actual evidence-based likelihood for cure of Alzheimer’s disease and other forms of dementia. The public has the right to know.

Giving realistic hope for cure is needed if we are fully committed to “Authentic Partnership” with this population (a term coined by Professor Sherry L. Dupius, Murray Alzheimer’s Research and Education Program, University of Waterloo, Canada).

Frequent but unrealistic promises for cure of Alzheimer’s disease as “just around the corner” have been a commonplace and “business as usual” in the past several decades.

Numerous thought leaders have recently expressed their deep concern about these misleading and unethical claims; some of whom have stated that such promises are a strategy for massive fund raising efforts aimed predominantly at curing the disease.

For example, Professor Peter Whitehouse, a prominent geriatric neurologist, cognitive neuroscientist, and global bioethicist, who has seen thousands of people struggling with brain aging throughout his career, makes a strong case as to why he believes “We are giving people false hope.” He explains,

“False hope is a better fund raiser than realistic expectations. Organizations that comprise the Alzheimer’s empire thrive because the Alzheimer’s myth is a cash cow that keeps on giving. Many of us in the field worry that the pursuit of truth has been eclipsed by the pursuit of raising funds.”

In accordance, Dr. Paul Raia, a national expert who worked for nearly 30 years in various leadership positions at one of the founding chapters of the Alzheimer’s Association wrote me recently,

“There is a deliberate attempt to mislead the public and a misdirection of funds. There will not be any single cure, because there are many different diseases that combine to cause many forms of dementia. Prevention could significantly reduce the number of dementia cases…”

My recent article – Trust at Stake: Is the “Dual Mission” of the U.S. Alzheimer’s Association Out of Balance? – provides a comprehensive description of these concerns, the growing recognition of the “unbounded complexity” of Alzheimer’s disease, the major challenges involved in curing it (not to mention dozens of other forms of dementia…) as well as the far-reaching negative consequences these unrealistic claims have on the daily lives, support, and care provided to millions of people living with dementia and the support and education sorely needed by their family and paid care partners.

Shortly after my article was published on August 25, 2017 (only the 150-word abstract of the article was publicly available at that point), I was told by a colleague of mine, a co-chair of a leading and innovative national dementia-friendly education and advocacy organization (i.e. “the organization”) that the National Office of the U.S. Alzheimer’s Association contacted two of the organization’s board members and at least two of the organization’s partners about their concerns and “thinly veiled threats” to withhold funding to their organizations and companies if “the organization” would publish information about my article in its e-News (which it has already done at that point; the e-News stated that I raised “a crucial question” in my article). I was told that these board members and partners “voiced their concern about upsetting the Alzheimer’s Association.” In the words of my colleague at the organization, “The bullying reach of the Alzheimer’s Association hit “the organization.”

A few days later, a colleague of mine who is living with dementia and a leading national advocate for this population, wrote me that the Alzheimer’s Association is “squashing the article wherever they see it.” He added that it has become toxic and people have removed it from their websites and social media due to pressure by the Alzheimer’s Association.

He encouraged me to make the full-text version of the article publicly available as, in his words, “this will have a bigger impact.” Other colleagues told me that many people want to read the full-text article but are unable to do so because they do not have subscription to a university library database.

Thanks to a generous donation made by an individual who for years was caring for a parent living with dementia (the donor asked to remain anonymous), the full-text article is now publicly available online free of charge. (Citation: Caspi, E. (2017). Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance? Dementia: The International Journal of Social Research and Practice. Published Online Ahead of Print.)

What makes it so that the predominant biomedical research focus on cure and the frequent but unrealistic promises for cure as being “just around the corner” represent one of the biggest problems in a field dedicated to serving, supporting, and caring for this population?

For several decades, the gross imbalance has been systematically diverting precious societal resources – many billions of public (tax payers) and private donor dollars away from psychosocial research aimed at improving the safety, quality of care, support, and quality of life of people with dementia as well as from prevention of abuse and neglect of these individuals in the community and long-term care homes. As importantly, it diverted funding away from evidence-based person-directed care and timely support and education that should be provided to these underserved individuals and their family care partners.

After reading my article, Dr. Paul Raia wrote me:

“Too much attention is given to the quest for the ‘magic pill,’ too little attention is being given to prevention through healthy lifestyle, too little money and research is put into treating symptoms of those living with dementia with behavioral interventions, too little money is put into supporting families as caregivers, and too little effort is put into regulating services like adult day heath [centers], assisted living and dementia care in nursing homes. In all of this, the Alzheimer’s Association has focused on the wrong targets and exploited the general public lack of information.”

Another colleague of mine who lives with dementia and is an advocate for this population wrote me, “It is useless to direct our energies to the Alzheimer’s Association…they are just too powerful with their funding and ability to kill off anyone who dares to question them.”

A couple of weeks ago, when I asked my colleagues at “the organization” if they would be willing to share the link to the full-text version of my article within the organization’s network, I was told that the board of the organization expressed their wish that “the organization” would not “appear to be agitating the Alzheimer’s Association” (the comment was made in reference to the earlier dissemination of a link to the abstract of my article in the organization’s e-News) and therefore it would not be possible.  

Which made me wonder…

What about the dozens of millions of people living with dementia and their family members who are very frustrated, upset, and “agitated” by the fact that for decades sorely needed (including life saving) support services and educational programs are not provided to them because precious societal resources and funding (many billions of $) have been diverted away from these services and programs in the excessive quest to cure Alzheimer’s disease?  

Interestingly, one Webster dictionary definition of the word “Agitate” is: “To discuss earnestly.”

Unfortunately, the fear of certain organizations and individuals to publicly “say it as it is” and “speak truth to power” (the National Alzheimer’s Association has been described to me by my colleagues as an 800-pound gorilla) serves as a persistent barrier for our society’s ability to have a sincere and open national discussion about the most effective ways to serve and support people living with Alzheimer’s disease and other forms of dementia and optimize their psychological well-being and brain health.

It is worth noting that shortly after the publication of my article, a co-chair of “the organization” wrote me “I thought the article was very compelling and very realistic.” Another co-chair wrote me: “Kudos for such a terrific article!!” “Excellent job” and “This is an important body of work.” The person added that the organization “110% supports you.” Later on the co-chair wrote me, “Few people are willing to speak truth to power.”

The day we see the truth and cease to speak is the day we begin to die – Martin Luther King Jr. 

The National Alzheimer’s Association knows the truth. I wrote the article to the general public, people in earlier stages of dementia and their family members, policy makers, federal funding agencies (such as National Institute on Aging), foundations, and private donors in hopes that they will become more informed when they develop their strategic plans and funding priorities.

A notable example is Bill Gates’ recent donation of 50 million dollars from his personal money towards efforts to cure the disease: Bill Gates’ Newest Mission: Curing Alzheimer’s Disease, CNN, November 14, 2017.  

In addition, numerous celebrities are systematically identified and recruited by the National Alzheimer’s Association often for the cause of curing Alzheimer’s disease. For example, the National Alzheimer’s Association Annual Report (Fiscal Year 2016; pages 37-40) lists no less than 146 “Celebrity Champions,” who, according to the association, “enthusiastically embrace our vision of a world without Alzheimer’s disease.”

To what extent these individuals are fully informed when they decide how to contribute their time, resources, wealth, and influence to addressing Alzheimer’s disease and other forms of dementia?

The biomedicalization of Alzheimer’s disease and other forms of dementia frequently perpetuates the misconceptions and harmful stigma commonly associated with living with these conditions.

According to the Alzheimer’s Association, “stigma is the use of negative labels to identify a person with a disability or illness. Stigma around Alzheimer’s disease exists, in part, due to lack of public awareness and understanding of the disease.” The association adds, “facing stigma is often a primary concern of people living with Alzheimer’s and their care partners.” True.

Is it possible that the National Alzheimer’s Association, an organization claiming to “drive the national conversation about Alzheimer’s,” intentionally stigmatize the very population it serves? Does it suffer from Dementism?

Dr. Stephen Post, bioethicist and author of the book The Moral Challenge of Alzheimer’s Disease and recipient of the Pioneer Medal for Outstanding Leadership in Health Care, wrote in the year 2000,   

“The convenient propensity to think more highly of some lives than others must be restrained by some principle of equal human worth.” He adds, “The term Ageism [i.e., “discrimination based on age”] does not capture the specificity of resentment against the deeply forgetful. We therefore need a new term, and I here suggest ‘dementism.’”

In her ChangingAging post called Confronting Dementism (January 21, 2015), Lynn Casteel Harper, M.Div. a writer, minister, and chaplain, writes about barriers for a dementia-inclusive world:

“Bioethicist Stephen Post uses the term ‘dementsim’ to describe the prejudice against the deeply forgetful. Dementism reflects a deep cultural sickness that combines a bias against old age (agesim) with a bias against impaired cognition (cognitivism). The result is a highly pessimistic and reductionist attitude toward persons with dementia. They are their disease; they are shells, husks, the “living dead”; they can have no quality of life. The disease is “the death that leaves the body behind,” which feeds the notion that dementia creates a category of sub-humans, not unlike zombies.”

Is it possible that the National Alzheimer’s Association knowingly stigmatize people living with dementia as a means to control the national conversation about Alzheimer’s disease and serve its mission to “conquer” the disease?

Sounds unlikely…right? Especially given the Alzheimer’s Association’s helpful webpage called Overcoming Stigma and 2-minute video called Alzheimer’s Stigma 2013 (informed by the great work of the Alzheimer’s Association Early-Stage Advisory Group).

This possibility was recognized over half a century ago by Erving Gofffman, professor of sociology and author of the book Stigma: Notes on the Management of Spoiled Identity (1963). He stated, “Stigmatization can serve as a means for formal social control.”

Christine Bryden, an author and advocate who is living with dementia, observed that using negative images that are stigmatizing to people living with dementia serve a fund raising purpose. She says, “the stereotype tugs at the heartstrings and loosens the purse strings.”  

A couple of recent examples that make one wonder whether this might be the case include the biased, deterministic, tragedy-oriented narrative, fear-fueling, stigmatizing, and disempowering PBS film Alzheimer’s: Every Minute Counts (January 25, 2017) (that, not surprisingly, concludes with a plug for medical research funding) and the Alzheimer’s Association’s recent stigmatizing and damaging campaign called Pure Imagination Project.

For a balanced, informed, and responsible analysis of this film and campaign, see ChangingAging post Alzheimer’s: Every Person Counts: A Call for Action (January 23, 2017) and Anne Basting’s recent ChangingAging post called Stealing Hope (December 29, 2017).

Another film is called Monster in the Mind: The Convenient Un-Truth about Alzheimer’s Disease, which was screened on July 26 2016 at the Alzheimer’s Association International Conference in Canada. The film is a product of Jean Carper, a former medical journalist who 30 years ago was “part of the propaganda machinery to sell Alzheimer’s to the public.” It describes the transformation she went through as she learned more and more about the disease over the years. It contains critically important messages to the public such as those that could enable to move beyond fear tactics as a powerful strategy for massive fund raising for cure and unrealistic promises for cure into the realm of informed action aimed at prevention of the disease.  

A recent article by Dr. Peter Reed, Dr. Jennifer Carson and colleagues in AMA Journal of Ethics provides a compelling discussion of the far reaching negative impacts of “the tragedy discourse of dementia” (which currently is largely driven by the National Alzheimer’s Association) on perpetuating the stigma experienced by this population. It also describes the major missed opportunities caused by it; ones that prevent the implementation of large-scale initiatives and funding that would enable this population to live their life to the fullest despite having substantial cognitive disabilities. (Citation: Reed, P., Carson, J., & Gibb, Z. (2017). Transcending the tragedy discourse of dementia: An ethical imperative for promoting selfhood, meaningful relationships, and well-being. American Medical Association Journal of Ethics, 19(7), 693-701.)  

Pfizer’s historic decision to discontinue its efforts to develop treatments for Alzheimer’s disease (announced on January 6, 2018) is an important landmark that may signal a paradigm shift; the decision warrants a closer look elsewhere (as more information will be released to the public about it in the future) not only because of the possible losses it may represent but as importantly the rare opportunity for positive and meaningful fundamental changes it could bring to this underserved population.

Should we be surprised about Pfizer’s decision?

The collective view of dozens of researchers in U.S., Canada, and U.K. as was reported in detail in the groundbreaking book Alzheimer’s Conundrum: Entanglements of Dementia and Aging by Professor Margaret Lock (published in 2013) suggests that the answer is “No.”

Why?

Some of the fundamental premises underlying the majority of research studies aimed at finding a cure for Alzheimer’s disease have been called into question in recent years. Examples include, the “Localization Theory;” “the Amyloid Cascade Hypothesis”; Insufficient strength of correlation between amyloid plaques and cognitive dysfunction; the fact that “a good proportion of individuals who harbor plaque (the substance commonly hypothesized to incite the molecular cascade that results in Alzheimer neuropathology) continue to be cognitively in good health;” and the fact that the leap from clinical trials in animal models (such as mice) to humans is substantial and not always fully appreciated and openly recognized.

Dr. Allen G. Power, M.D., author of the two books: Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, asserts:

“If you are waiting for the magic pill . . . .This is probably 50 or 70 illnesses with different combinations of causes, lifestyles, life events, and other diseases feeding into it. There is not going to be a magic bullet coming any time soon. I hope that we’re gonna have drugs that can modify the progression of the disease . . . The truth is that right now we need to care for millions of people who are going to have dementia and what happens is that we put all of our money into this basket of cure and we are putting no money into improving the care for millions of people that need it. So we need to change the balance, I am not saying we should stop doing drug research . . . but we need to drastically change the balance because it’s just not realistic to give 98% of our donation $ to try and find that pill and do nothing for these 5 million people that need something today. I am not saying that to create despair or discourage you. I am saying this to empower you.”

He then added:

“Go out today and change the life of someone with dementia. Don’t wait for the pill because there are things we can do right now that can re-engage people and create life worth living.”

In accordance, Dr. William H. Thomas, M.D., Founder of the Eden Alternative; author of the book What are Old People For? How Elders Will Save the World, states:  

“I would be willing to bet there will never be a simple, well tolerated medical cure for dementia. Why not? The human brain is an astonishingly complicated organ and its workings are vastly more complicated than the simple chains of cause and effect on which most medical treatment rely. Nonmedical approaches to the well being of people living with dementia can go far beyond anything any pill has to offer.”

Professor Margaret Lock concludes her well-researched and eye-opening book by stating:

“In the haste to find cures, less often marked is another problem, namely a shift of attention away from social, political, and environmental factors, including poverty, inequality, discrimination, and racism – factors deeply implicated in disease causation. These are the variables that thus far have received the least attention in the Alzheimer’s disease world.”

She adds:

“A public health approach to aging and Alzheimer’s will have a much greater effect in reducing the incidence of Alzheimer’s disease worldwide than will the technologically oriented molecular approach currently being heralded as a paradigm shift.”

While Pfizer’s decision may at least partially reflect the repeated and very costly failures of “promising” compounds, moving from one extreme (predominant focus on use of public and private dollars for cure) to another (Pfizer’s decision) is likely unhelpful either.

A collective scientific and public health pause to deeply, genuinely, and openly reflect about the fundamental premises underlying all previous, current, and future efforts to cure and prevent Alzheimer’s disease and other forms of dementia may ultimately prove as a more reasonable, responsible, and promising approach.  

Such reflection might even lead to realizing Marcel Proust’s observation by which, “the real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”

Only through the full commitment to engagement in this deep transformational reflection (to ensure full transparency and accountability, key steps in the reflection process must be open to the public; tax payers and private donors who pay the lion share of drug treatments) it would be possible to regain the public’s trust, which is necessary if we are serious about creating an “authentic partnership” with people living with dementia.  

“There is one thing that is essential to science more than intelligent methods; that is, the genuine passion to find the truth, whatever it may be” – Charles Sanders Peirce, American philosopher and scientist who is considered “the father of pragmatism.”