UCSF Neurologists Urge Doctors to Provide Patients ‘Honest Scientific Interpretation’ of Bogus Dementia Treatments
Americans are feeding the multibillion-dollar “brain health” dietary supplement industry in a desperate bid to stave off or reverse Alzheimer’s disease and other dementias. But such treatments are “pseudomedicine” and health care providers should discourage patients from pursuing them, say neurologists at UC San Francisco.
In a Jan. 25, 2019, opinion piece in JAMA, neurologists urge doctors to provide an “honest scientific interpretation” of any evidence, together with associated risks and costs, in conversations with patients and families inquiring about “brain-boosting” dietary supplements or other unproven treatments.
“Dietary supplements marketed for brain health are a pseudomedicine practice that patients often ask about,” said first author Joanna Hellmuth, MD, MHS, a neurologist at the UCSF Memory and Aging Center and a member of the UCSF Weill Institute for Neurosciences. “We have also seen a rise in personalized protocols to reverse cognitive decline and dementia. Unfortunately, these interventions currently lack data proving they are effective.”
Five million Americans are estimated to have Alzheimer’s disease and related dementias, according to the Centers for Disease Control and Prevention – a figure that is projected to grow to 13.9 million by 2060. To date, there are no drugs that have been shown to prevent or reverse diseases like Alzheimer’s, a fact that prompts many people to turn to questionable treatments with false claims.
The global market for brain health dietary supplements generated $3.2 billion in 2016, according to Research and Markets. It is expected to reach $11.6 billion by 2024.
“The landscape of limited treatments for dementia and wide access to information has culminated in a troubling increase in pseudomedicine,” said Bruce Miller, MD, senior author of the opinion piece and director of the UCSF Memory and Aging Center and the Global Brain Health Institute. “While unethical forces promote pseudomedicine, an educated community of doctors and patients can combat these practices.”
Glowing Testimonials Do Not Equal Data
The editorial urges doctors to educate patients about the difference between the glowing testimonials used in advertising over-the-counter dietary supplements and other direct-to-consumer pseudomedicine, versus the rigorous safety and efficacy data mandated by the U.S. Food and Drug Administration before a prescription drug goes to market.
“We recommend that providers point out that if any treatment was found to be effective for dementia, it would already be widely used,” said Hellmuth. “However, doctors should also make clear that they will continue to partner in patients’ medical care, if interpretations of suitable treatments ultimately differ.”
Underpinning much of pseudo-medicine is poor quality data that reels in patients attracted by “evidence” presented in a scientific-appearing format that lacks the essential features of a good study, the commentary explains. This includes the lack of randomization, in which half of a study’s participants receive placebo, so that its effects can be compared to the effects of the other participants receiving the treatment. These poor-quality scientific practices are particularly evident in treatment regimens published in “predatory open-access journals.”
“While high-quality, open-access journals exist, these predatory journals can lack editorial rigor in the scientific review process,” said Hellmuth. “These publications can provide a scientific cover for pseudoscientific interventions.”
Co-Author(s): Gil Rabinovici, MD, of the UCSF Memory and Aging Center.
Funding: National Institute of Mental Health.
Disclosures: Rabinovici receives research support from Avid Radiopharmaceuticals, Eli Lilly, GE Healthcare, Life Molecular Imaging; and consulting honoraria from Axon Neurosciences, Eisai, Genentech, Merck and Roche. He is an associate editor for JAMA Neurology. Miller receives research support from the Quest Diagnostics Dementia Pathway Collaboration, Cornell University and the Bluefield Project to Cure Frontotemporal Dementia; he serves as medical director for the John Douglas French Foundation, scientific director for the Tau Consortium, director/medical advisory board of the Larry L. Hillblom Foundation and he is the former president of the International Society of Frontotemporal Dementia.
UC San Francisco (UCSF) is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy; a graduate division with nationally renowned programs in basic, biomedical, translational and population sciences; and a preeminent biomedical research enterprise. It also includes UCSF Health, which comprises three top-ranked hospitals – UCSF Medical Center and UCSF Benioff Children’s Hospitals in San Francisco and Oakland – as well as Langley Porter Psychiatric Hospital and Clinics, UCSF Benioff Children’s Physicians and the UCSF Faculty Practice. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. UCSF faculty also provide all physician care at the public Zuckerberg San Francisco General Hospital and Trauma Center, and the SF VA Medical Center. The UCSF Fresno Medical Education Program is a major branch of the University of California, San Francisco’s School of Medicine.