Thinking About Implications of Mishandled Research into Alzheimer’s Disease and Related Disorders

As someone who has spent the majority of my academic career thinking about legal implications of age-associated cognitive impairments, I’ve often been tempted to write about the latest science-based “breakthroughs,” especially as they may relate to Alzheimer’s Disease.  But over time, I came to a personal belief that most of the research connected to prevention or cures for these diseases was likely to drift away, and not prove to result in productive science-based changes in the near future.  Thus, most of my research time in aging has focused on issues about care (both healthcare and social care), finances, and access to justice issues, for both affected individuals and their families and caregivers.  There is plenty to keep a law-related researcher on aging busy with this focus. 

As I grow older, and as the heritage from my own family suggests Alzheimer’s or related disorders will affect my generation directly, I do find myself looking more carefully at claims about scientific  breakthroughs on prevention or treatment.  My Fulbright scholarship time in the Fall of 2024 allowed me to do a lot of catching up on science-based developments. For example, my news feeds began sending me regular updates on potential drug interventions for a variety of age-related diseases, including diseases of the brain.   As I’m not “in” science research per se, I knew I was likely hearing only part of the science research picture, but the news was intriguing. Who doesn’t hope for breakthroughs that mean you may be able to avoid losing essential cognitive functions, especially the ability to think and communicate clearly?  For example, one of my long-standing concerns is about financial exploitation of older adults.   Therefore, an area of science-research that caught my attention is about studies suggesting that a measurable loss of “entorhinal cortex thickness” may be a factor in financial vulnerability in “cognitively unimpaired older adults.”  Similarly, it is exciting to hear that my own state of Pennsylvania is committing real dollars in a bipartisan focus to address “Alzheimer’s, dementia and related disorders.” 

Then the most recent sobering news items about science-based research interrupted my work, including:

• Articles focusing on problems arising in drug-trials testing potential medications aimed at intercepting the progress of Alzheimer’s Disease.  For example, see The New York Times article by Walt Bogdanich and Carson Kessler that appeared originally on October 23, 2024 on “What Drugmakers Did Not Tell Volunteers in Alzheimer’s Trials” about their susceptibility to brain injuries — including brain bleeds or brain swelling that could lead to death — while participating in testing.  
• The New York Times Opinion piece on Sunday, January 26, 2025, describing what the featured author, Charles Piller, calls a “legacy of lies” in Alzheimer’s science. See the electronic copy of  “The Devastating Legacy of Lies in Alzheimer’s Science” at  https://www.nytimes.com/2025/01/24/opinion/alzheimers-fraud-cure.html, which was also published as the lead story in the Sunday, January 26, 2025 print edition. 

 I have yet to see responsive commentary from the science researchers.  But, as a law-related researcher, here are some of the implications I can see from emerging news about  “mishandling” of the research connected to the causation and prevention of Alzheimer’s and related diseases:

A.  Lawsuits.  Of course.  Sadly so. 

B.  According to articles on drug trials for an experimental Alzheimer’s drug known as BAN2401, there are indications that volunteers were told that certain genetic profiles might predispose people not only to Alzheimer’s Disease, but also to brain injuries from the drugs, and yet participants may not have been told the results of testing on whether they had the risk-related genetic factors.  Such a non-disclosure practice raises legal concerns about whether there was “informed consent” by or for individuals entering the trials.  How did this happen?   

C.   In the most recent piece linked above, the author has indicated that a huge swath of formal research on Alzheimer’s causation and treatment is flawed.  The author indicates that a “team of brain and scientific imaging experts” helped him analyze “suspicious studies by 46 leading Alzheimer’s researchers.” Further, he says that “the experts identified nearly 600 dubious papers from the group that have distorted the field — papers having been cited some 80,000 times in the scientific literature.”  Certainly this description would seem to carry significant concerns about the accuracy of the research. But, from a legal standpoint, it also suggests that findings may lead individuals, families, caregivers, government entities, and potential funders, to be more likely to disengage from science-based analysis of brain function, treatment and care protocols for these admittedly complex diseases.  How will this research community establish reliable databases for the future? How does one trust new pathways for research, including the possibility of alternatives to the “amyloid hypothesis” for causation of Alzheimer’s?  One funding argument is to focus more on encouraging “healthier” lifestyle choices and behavior-modifications, but is that enough incentive if there is no “real” documentable hope of a better outcome? 

Such indications of bad research at a core level also play into the hands of a new national Administration that seems eager to dump and defund traditional science. 

The essential problem is that we need more engagement, not less, to truly have a hope of making society healthier, safer and better able to support dignity as we age.