On July 26, a different kind of happening interrupted the usual bustle of activity at this year’s Alzheimer’s Association International Conference (AAIC 2016) in Canada. Attending scientists became the first viewers (at a sneak-peek preview before the North American premiere) of a new kind of full-length documentary film — one that reveals untold truths about Alzheimer’s disease and emphasizes that the disease can largely be prevented by the individual actions of each and all of us.
“Monster in the Mind – The convenient un-truth about Alzheimer’s disease,” is the product of former medical journalist Jean Carper’s obsession with the disease, and is as much her own story as a story of Alzheimer’s itself, although one rarely shared.
In the film, Carper laments that while working as a journalist more than 30 years ago, she became “part of the propaganda machinery to sell Alzheimer’s to the public,” along with hopes for a soon-to-come cure. In a CNN documentary, she interviewed top researchers, who claimed that a cure for the horrifying disease was only a couple of years away. Since then, the idea of Alzheimer’s never quite left Carper. And when she found out that she carried the No. 1 Alzheimer’s risk gene, ApoE, her quest to understand the mystery of Alzheimer’s intensified. Most research funds go to straight to finding a cure; Carper’s personal crusade focused on prevention.
Featuring scientists and authorities in the Alzheimer’s field, the film takes the generally acceptable “truths” about Alzheimer’s disease and explores the flip side, finding surprising and genuinely encouraging information about the dreadful condition in return. Carper’s fear of the disease, running like a silver thread through the movie, allows her to explore not only the science but also the very idea of Alzheimer’s as the world’s most feared disease in the collective conscience — the “Monster in the Mind.” Carper lets us in on her own journey, unabashedly and bravely sharing her brain scan appointments and cognitive tests.
The film, with snippets culled from vintage science fiction horror movies, takes its viewers beyond the doomsday scenarios supplied by researchers and media equally: that by 2050 every other American over the age of 80 will have Alzheimer’s disease — an epidemic predicted by some to be worse than AIDS. Today, Alzheimer’s disease is viewed as the worst possible nightmare by a vast majority of people.
How did this equalization of Alzheimer’s and Armageddon happen? Was Alzheimer’s always viewed with irrational fear? Carper’s movie shows it was not — and should not be.
Before the 1970’s, Alzheimer’s was largely an unknown concept. Old age dementia was just “senility” and viewed as an unavoidable consequence of aging. Then, the National Institutes of Health launched a program to give the condition a face and name, involving Congress and encouraging pharmaceutical companies to search for a cure. Senility was re-named Alzheimer’s, and the fear that followed seemed to be an excellent tool for planting Alzheimer’s in the public mind.
Jesse Balenger, an Alzheimer’s historian at Drexel University in Philadelphia, speaks about the radically stigmatizing language used in the process of making Alzheimer’s a ‘hot’ research topic. Using expressions such as “the funeral that never ends” creates much more fear than is reasonable, he said. Other researchers note that Alzheimer’s patients are pictured as zombies.
Carper exemplifies what the fear of an Alzheimer’s diagnosis does to people by evoking an appalling case of medical maltreatment. In the Netherlands, a doctor was charged with routinely giving perfectly healthy people an Alzheimer’s diagnosis. The effects were equally shocking. One patient committed suicide. Many quit their jobs, sold their houses, and gave up their lives while waiting for the disease to come get them.
But, looking beyond the doomsday statements, what do researchers really know about the disease? Though Carper had focused on the disease for more than three decades, she was in for some surprises.
While it is often stated that an Alzheimer’s diagnosis today is about 90 percent accurate, studies show a different picture. An investigation of 852 brains of deceased people, diagnosed with Alzheimer’s while still alive, showed that only one-third had the brain changes, amyloid-beta plaque and tangles, that confirmed the diagnosis. Another third had both amyloid plaque and other changes, and the remaining third had something completely different that researchers do not even know what to call.
Peter Nelson, a professor of neuropathology at University of Kentucky, calls it an “Alzheimerification” of the field, stating in the documentary that Alzheimer’s makes up just about 40 percent of all dementia cases. According to Claudia Kawas, a professor of neurology at the University of California, Irvine, having plaques and tangles in your brain only doubles your chance of getting the disease; it doesn’t confirm it. In contrast, almost everyone having vascular destruction or hippocampal sclerosis — two types of dementia-related brain damage — develop dementia.
“If I had to choose between one of those, give me Alzheimer’s” Kawas said in the movie, referring to the much more aggressive nature of hippocampal sclerosis, on which very little research is focused.
So, despite what people generally believe, having Alzheimer’s-type brain changes does not guarantee that disease will follow.
Neither will genetic tests reveal any true risk for an individual, the movie points out. Professor Emerita Margaret Lock at McGill University, a medical anthropologist who Carper refers to as “the High Priestess of Alzheimer’s disease,” in fact, compares genetic tests to divination. She says that going to a fortune-teller will provide as much information as a test.
So if amyloid plaque and risk genes don’t cause Alzheimer’s, what does? Researchers agree that the short answer is “no one really knows.” And while the amyloid hypothesis — stating that the cause is buildup of amyloid in the brain — still dominates the research field, Carper shows that 99.6 percent of drug trials aimed at stopping Alzheimer’s by targeting amyloid-beta have failed. In the next moment, the movie features George Perry with the University of Texas telling the camera that removing amyloid from the brain can actually speed up dementia development — a scary thought, given the numerous clinical trials attempting to do just that.
What becomes increasingly clear, both when watching the documentary and reading an increasing number of other reports, is that environment and lifestyle are by far the largest determinants of dementia.
“People need to take personal responsibility about whether or not they develop dementia,” Majid Fotuhi, chairman of NeuroGrow Brain Fitness Center, said in the movie. That might seem as a harsh statement, but other researchers agree. A healthy diet, plenty of exercise, stress reduction and constantly exposing the brain to new challenges is the best recipe, by far, to avoid Alzheimer’s. Studies show that those factors, particularly exercise and brain training, actually reverse age-related brain shrinkage. We can grow bigger brains, but we need to work for them.
The idea that any individual can prevent Alzheimer’s is also mirrored by the fact that despite the predictions of a pending epidemic, individual dementia risk is going down. The predictions are solely based on projected growth of an aging population, but studies show that if risks continue to drop at the same rate as they are now — likely as a consequence of better lifestyle choices — only about half as many Americans age 80 or older will develop Alzheimer’s over the next 25 years as were forecast to.
Carper’s journey in handling her own fears of developing Alzheimer’s are brilliantly shared in this humorous, yet strikingly to the point, film. Viewers get to see that despite her ApoE gene, Carper is fit as a fiddle. No cognitive decline; no brain plaques.
“This is not just a movie, this is a movement,” Carper said when Alzheimer’s News Today spoke to her after the screening. The special premiere riveted about 125 of the world’s top-notch Alzheimer’s scientists, including some featured in the documentary. Carper said she was thrilled about the enthusiasm and support she received from the researchers.
“The movie got things 96 percent right,” said Lon White, one of the featured researchers, after watching the film. Another scientist said the film was 100 percent correct. Not only was the movie appreciated by the research community, scientists were surprised at some of the facts presented through Carper’s own research — for example, that Alzheimer rates are actually going down.
Alzheimer’s research has been very focused on finding a cure, and only recently has begun to show a focus shift to prevention, Carper said, explaining the lack of practical knowledge among scientists. But the field was difficult to penetrate, she said, even for someone like herself who has written books on the topic and spent decades learning as much as possible.
“It took me four and a half years to make the movie, and I thought when I started making the documentary, that I probably knew an awful lot about Alzheimer’s. But I was surprised at almost every turn,” she said.
Carper believes that much more funding is needed to research how environment and lifestyle affect risk for dementia, and to inform and empower people to prevent and delay dementia themselves.
“We need to think about dementia in old age not as a genetically hopeless condition, but as one that is very similar to just chronic diseases of aging like heart disease and arthritis,” she said.
Carper hopes her documentary will be influential in changing the view of Alzheimer’s among scientists and, more importantly, in changing expectations among ordinary people who are as frightened of ending up with Alzheimer’s as she once was. She is determined to continue working toward that goal.
While no distribution plans have yet been made, Carper hopes that the movie will be distributed broadly, reaching as many people as possible with its message that everyone can do something to prevent Alzheimer’s from targeting them.
Readers interested in learning more about the making of “Monster in the Mind – The convenient un-truth about Alzheimer’s disease,” or in other information, including possible plans for distribution, can visit www.monsterinthemind.com.