People with Alzheimer's diagnoses face bad prospects. There is no cure, and no effective treatment for the symptoms that often accompany memory loss – disappointments and even hallucinations, which can make patients agitated or aggressive.
But it is possible that marijuana may give some relief.
A new study at the McLean Hospital in Belmont will test the drug's effect on dementia patients. And a local family with personal experience with dementia is making it possible to study.
While Alex Spier, a Foxboro resident, was struggling 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 awful to see the kind of memories that had been suppressed all his life back from him," Greg said.
The story of Spier's life is remarkable and there are parts of it that no one would like to relive.
At 14, 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 fields because he [had] I learned to be a watchmaker. He had the habit of fixing the watches for German soldiers in exchange for food and water, "Greg said." And my father had always been a wise person. After he repaired the clocks, he would spit them out. And so those watches would work for about 90 days and then they would have to be repaired again. "
After the war, Spier decided to come to America, settling in New Bedford. With little more than his skill as a watchmaker, he opened a jewelry store and created a huge real estate business. He has dedicated his last years to philanthropy.
"It was a well-lived life. It didn't end well," Greg said.
Spier was diagnosed with Alzheimer's disease in February 2017 and spent the next few months in rapid decline.
Alzheimer's rarely follows a linear pathway and the disease progresses differently in each patient. The most recent memories could be the first to go and the memories that remain can be processed in ways that become delirious. Some dementia patients may actually find themselves trapped in the past.
Spier progressed rapidly from memory loss to behavioral symptoms that were more difficult to manage, becoming agitated and aggressive. The worst part was to relive the memories of the Holocaust.
"It was devastating to see that he came back out, in reality he was just talking about both German and Dutch words, asking his mother, [saying]"Let me out of Auschwitz." It was horrible, "said Greg." My mother [found] he tries to get into his car one day at 2 am to escape. "
Dr. Brent Forester, the head of geriatric psychiatry at McLean Hospital, said that these types of psychotic reactions are generally referred to as "behavioral symptoms of dementia" and are particularly difficult for family members and health professionals.
"These are the problems that are running out," he said. "They guide the burden of the disease. They envisage placement in long-term care facilities such as nursing homes or assisted living facilities, because families basically can no longer manage."
For families like Spiers, Forester said that conventional medicine has little to offer.
"The FDA has to date never approved a single drug to treat one of the behavioral symptoms of dementia," Forester said. "Any medicine we would use to calm or reduce those symptoms is completely off-label."
With or without approval, families and doctors are reaching 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 of marijuana.
Dronabinol is generally prescribed to reduce nausea and stimulate the appetite for patients undergoing chemotherapy or who are living with HIV, but it seems that both stimulate the appetite and reduce agitation in the small group examined by Forester.
"There was no control group," he said. "We were just treating people and measuring pre and post-, and it seemed to reduce agitation."
"What is interesting to me," said Forester, "is that there is such an interest in finding something new that many of us [dementia] patients are treated with drobaninol without this data from their doctors because they are simply desperate for something that is probably safe and can actually help. "
But dronabinol was not available to Spier, and no other treatment provided any relief from his horrible disappointments. The family was, however, able to obtain edible marijuana from a clinic in Colorado.
"We thought, why not try it?" Greg said.
They were amazed by the results.
"The first night we gave him was the first night he slept all night, I would say weeks. It was remarkable," Greg said. "I mean, it was evident the first time. The next day was positive … we had a really good time … we could have a discussion with him that seemed to understand".
Forester has listened to other anecdotal stories of patients like Spier, who has found relief in medical marijuana in his last months. But despite the widespread availability of medical and recreational marijuana, doctors do not have the data necessary to prescribe it responsibly.
"If I had to tell one of my patients to go to the store, I wouldn't know what relationship between THC and CBD to recommend. I wouldn't know which of the many products you can buy on the counter would actually be useful or right for them," said Forester. "There are so many very detailed questions that are completely unanswered in this area."
Those questions remain unanswered, thanks to current federal marijuana regulations that prevent them from funding their studies, Forester said.
"There really is no capacity that I am aware of at federal level to get funding for this kind of research, given current federal regulations on marijuana use," he said.
But there are no restrictions on how to spend private money. Long before he became ill, Spier started a charitable foundation that also supports medical research. Greg said that "they try to find those studies that are not necessarily able to get funding elsewhere".
Now, the base is entering 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 planning the study, which will take place at McLean Hospital. Greg said it's hard to imagine a result that would have pleased his father the most.
"One of his little mottos was:" I want to leave the world in a better place than I found, "said Greg.
Between the Holocaust and Alzheimer's, life has been very far from Spier. Even in death, he found a way to repay.