This story was published in The San Diego Union-Tribune on May 21, 2019.
Most nights for the past 38 years, married couple Bart and Karen Newsom have watched “Wheel of Fortune.” Recently, Bart has become agitated by one of the advertisements.
“There is a commercial that bugs me,” he said. “It’s a supplement, and they say it helps with memory. But I read about the studies that they did on the internet, and the studies which show it’s not effective at all.”
Bart’s wife Karen has Alzheimer’s disease. “I started noticing a change in her 10 or 11 years ago,” he said. “Before that, she was one of the strongest and most independent women I’ve ever met. She was just wonderful.”
A thriving online marketplace of dietary supplements is capitalizing on these vulnerable consumers. Some of these companies have fraudulently marketed their supplements as prevention, treatment, or even cures to cognitive decline.
In February, the U.S. Food and Drug Administration (FDA) and Federal Trade Commission (FTA) sent 12 warning letters to domestic and foreign companies selling 58 products that made false or misleading claims about their efficacy in the use of dementia.
In one warning letter to Gold Crown Natural Products, the government cited the company’s fraudulent claims that their colostrum supplement was shown to benefit patients with Alzheimer’s disease.
The U.S. government called out false advertising on another one of Gold Crown’s Natural Products, Melatonin, which fraudulently claimed that “many experiments have been conducted on this and it is proved that melatonin supplements are used to cure Alzheimer’s disease.”
These FDA letters request a written response within 15 days as to the steps which will be taken to correct the violation, and failure to comply may result in seizure or injunction.
Dr. Howard Feldman, professor of neuroscience at the University of California, San Diego, says the FDA was acting to protect the public interest. “People are now vulnerable to the kinds of claims that are made without substantiation,” he said.
Feldman is in a position to know. He is the director of the Alzheimer’s Disease Cooperative Study, the largest and longest study of treatments. Since 1991, his research team has tested treatments and interventions to see whether or not they will work in the prevention or treatment of Alzheimer’s disease.
According to a county report published in 2018, Karen Newsom is among more than 84,000 of San Diego County residents age 55 or above living with dementia or Alzheimer’s disease. This number is predicted to increase by 36 percent by 2030.
When Feldman was practicing as a clinician, he observed that his patients frequently came to their appointments with a sack full of medications and dietary supplements. “Individuals at risk or with Alzheimer’s typically are older and may be on multiple medications. The potential for interactions with supplements is that much higher,” he said.
While many people assume that dietary supplements are harmless, this is not always the case. Some supplements are known to interact with medications, which can make the drugs less effective, dangerous, or even deadly.
Also, because the FDA does not regulate dietary supplements, there is no oversight to ensure that the materials listed in the ingredients are as advertised.
For many families affected by Alzheimer’s and dementia, the period after a diagnosis can be especially stressful and emotional. Amy Abrams, director of education at Alzheimer’s San Diego, sees this every day in her early stage support groups and classes.
“By the time they’ve come to a class with us,” she said, “they’ve done hours and hours of online research and are just overwhelmed by it.”
She understands the desperation to find something that works. Despite all the research, there are only a few FDA-approved prescription medicines that can treat the symptoms of Alzheimer’s and none to stop or reverse the course of the disease.
“We tell them how we don’t know about Alzheimer’s all the time, so it sows this doubt,” Abrams said. She said she imagines people thinking: “‘If the scientists don’t have a cure or understand then why proteins accumulate, then who is to say that this person who has found a miracle cure hasn’t understood it better? ’”
The Newsoms decided to stick with the advice of their doctors in the treatment of her cognitive decline. The couple, however, tried one type of dietary change. “I used to feed her a lot of coconut oil,” Bart said, noting that they both liked the taste. “Nothing we tried really worked.”
As a caregiver, Bart has made Karen his focus, but it hasn’t been an easy road. He is now 66 and she is 73.
“When Karen was first diagnosed with dementia, I gave notice at my job and I retired so I could be with her 7/24,” Bart said. “It was kind of stressful because you have to be pretty vigilant all the time. You never know when she’s going to get upset or agitated. There are all these little things to do for the activities of daily living. You have to be there.”
After seven years of caregiving at home, Karen fell and broke her hip. She spent a few months at various rehab facilities. Recently, she transitioned to an assisted living facility in Encinitas for patients with dementia. Bart visits daily from La Mesa.
Every night at 7 o’clock, Karen gets her medicines and they watch “Wheel of Fortune.”
At the heart of Bart’s agitation over the supplement commercials is his anger that the company is selling false hope. After all, he understands why people turn to alternative treatments. “People are vulnerable, and they want to reach out and get something that will help.”
Abrams also bristles that “people are peddling cures under ever rock.” She urges families and patients to be careful consumers of information and evaluate the source.
“I’d love for people to turn to organizations like ours to reach out and ask for information,” she said. “There are resources out there.”
If you or a loved one want information on Alzheimer’s or dementia, please visit Alzheimer’s San Diego or Alzheimer’s Association—San Diego/Imperial Chapter for free resources and support.
Amialya Durairaj is a health-writing consultant at Little Octopus LLC. Her work has appeared in The Washington Post, SF Gate, and The San Diego Union-Tribune.