People diagnosed with Alzheimer’s face bleak prospects. There’s no cure, and no effective treatment for the symptoms that often accompany memory loss — delusions, and even hallucinations, that can make patients agitated or aggressive.
But it’s possible marijuana might provide some relief.
A new study at McLean Hospital in Belmont will test the drug’s effect on dementia patients. And one local family with personal experience with dementia is making the study possible.
As Foxboro resident Alex Spier was grappling with dementia, he began to relive his childhood memories of the Holocaust. His son, Greg, said that before Alzheimer’s disease, Spier rarely spoke of those days.
“It was just horrible to see those sort of memories that had been suppressed his entire life coming back to him,” Greg said.
Spier’s life story is remarkable, and there are parts of it no one would want to relive.
At 14 years old, Spier was fighting the Nazis with the Dutch Resistance when he was captured. He spent the next three years in three different concentration camps.
“He survived in the camps because he [had] learned to be a watchmaker. He used to fix watches for the German soldiers in exchange for food and water,” Greg said. “And my father had always been a shrewd person. After he would repair the watches, he would spit in them. And so those watches would work for about 90 days and then they’d have to be repaired again.”
After the war, Spier decided to come to America, settling in New Bedford. With little more than his watchmaking skills, he opened a jewelry store and went on to create a huge real estate business. He devoted his later years to philanthropy.
“It was a life well lived. It just didn’t end well,” Greg said.
Spier was diagnosed with Alzheimer’s Disease in February of 2017, and he spent the next several months in rapid decline.
Alzheimer’s rarely follows a linear path, and the disease progresses differently in each patient. More recent memories may be the first to go, and the memories that remain can be processed in ways that become delusional. Some patients with dementia can find themselves effectively trapped in the past.
Spier progressed quickly from memory loss to behavioral symptoms that were more difficult to manage, becoming agitated and aggressive. The worst part was reliving memories from the Holocaust.
“It was devastating to see that come back out. He was actually in the very end talking both German and Dutch words, asking for his mother, [saying], ‘Get me out of Auschwitz.’ It was horrific,” said Greg. “My mother [found] him one day at two o’clock in the morning trying to get into his car to escape.”
Dr. Brent Forester, the chief of geriatric psychiatry at McLean Hospital, said these kinds of psychotic reactions are broadly termed “behavioral symptoms of dementia,” and are particularly tough on family members and caregivers.
“These are the problems that are exhausting,” he said. “They drive the burden of the illness. They predict placement into long-term care settings such as nursing homes or assisted living facilities, because families basically can’t manage anymore.”
For families like the Spiers, Forester said conventional medicine has little to offer.
“The FDA to this day has never approved a single medication to treat any of the behavioral symptoms of dementia,” Forester said. “Any medicine we would use to help calm or reduce those symptoms is all off-label.”
With or without approval, families and doctors are reaching for the “off-label” options. Forester recently completed a study showing dronabinol (also known by its trade name marinol) seemed to reduce agitation in a small group of dementia patients. Dronabinol is a pharmaceutical version of THC, the main psychoactive ingredient in marijuana.
Dronabinol typically is prescribed to reduce nausea and stimulate the appetite for patients undergoing chemotherapy, or living with HIV, but it seemed to both stimulate appetite and reduce agitation in the small group Forester studied.
“There was no control group,” he said. “We were just treating people and measuring pre- and post-, and it seemed to reduce agitation.”
“What’s interesting to me,” Forester said, “is that there’s such an interest in finding something new that a lot of our [dementia] patients are being treated with drobaninol without any of this data by their physicians, because they’re just desperate for something that’s probably safe and may actually help.”
But dronabinol was not available for Spier, and no other treatments were providing any relief from his horrific delusions. The family was, however, able to get edible marijuana from a dispensary in Colorado.
“We figured, why not give it a try?” Greg said.
They were amazed by the results.
“The first night that we gave it to him was the first night that he slept through the night in, I’d say, weeks. It was remarkable,” Greg said. “I mean, it was noticeable the first time. The next day was positive … we had really quality time … we could have a discussion with him where it seemed like he could comprehend.”
Forester has heard other anecdotal stories of patients like Spier, who found relief in medical marijuana in his final months. But despite the widespread availability of medical and recreational marijuana, physicians don’t have the data they need to responsibly prescribe it.
“If I were to tell a patient of mine to go to the store, I wouldn’t know what THC to CBD ratio to recommend. I wouldn’t know which of the many products you can buy over the counter would be actually helpful or right for them,” Forester said. “There are so many very detailed questions that are completely unanswered in this area.”
Those questions remain unanswered, thanks to current federal rules about marijuana that prevent the studies from getting funded, Forester said.
“There really is no capacity I’m aware of at the federal level to get funding for this kind of research given the current federal regulations around the use of marijuana,” he said.
But there are no restrictions on how private money can be spent. Long before he got sick, Spier started a charitable foundation that also supports medical research. Greg said they “try to find those studies that aren’t necessarily able to get funding elsewhere.”
Now, the foundation is getting into marijuana research.
The Spier Family Foundation is funding a study that will explore marijuana as a treatment for the behavioral effects of dementia. Forester is designing the study, which will take place at McLean Hospital. Greg said it’s hard to imagine an outcome that would have pleased his father more.
“One of his little mottos was, ‘I want to leave the world a better place than I found it,’” Greg said.
Between the Holocaust and Alzheimer’s, life took a lot away from Spier. Even in death, he’s found a way to give back.