Rethinking Alzheimer's Research: Why Partnerships are Better than Lab Rats
At first glance, you may think that the tall, lanky man with white hair sauntering across campus is there to teach a class or go to a faculty meeting. But when he walks into the classroom, he takes his seat in the front of the class facing the professor. In more ways than one, he’s no ordinary student.
Ron needs to do some things differently than his classmates in order to be successful. At 81 years old, he has macular degeneration. Canada recognizes this condition as a visual disability and so the Accessibility Department at Kings College has helped Ron access some tools as a special-needs student.
For example, he gets an extra half-hour on exams. His materials are printed in a much larger font so that he can read them more easily. And the school provided him with voice-to-text software so he can more easily type papers.
When he first went back to university, administration there tried to convince Ron to audit the classes rather than enroll as a student. If he audited the classes, Ron would be able to attend lectures but he wouldn’t have to take tests, do homework or write papers.
He would hear nothing of it, since the reason he was going back to school was to learn and to be challenged. Determined to stretch his capacity and capabilities, Ron’s only definition of failure was failure to try. He had spent much of his career in public policy and was eager to delve into Political Science and Disability Studies.
In the beginning, Ron’s grades were not great. Mostly Cs and Ds. But he studied, memorized, discussed and wrote and by the end of his first semester, had earned an A on his final exam.
But Ron’s not just an older man with bad eyes.
Six years ago, Ron was diagnosed with Alzheimer’s.
“The secret, I think, is in the attitude. You either can or you can’t. Either way, you’re right. When a doctor tells you you’ve got Alzheimer’s, you can either rub ashes on your face and sit on the couch waiting to die while your brain turns to mush…or…you can do something about it.” - Ron Robert
Like many other people who are living with a diagnosis of some form of dementia, Ron received very little support or advice from his doctor at the time of diagnosis. No treatment program. No hope.
In another country, like Australia, his doctor may have been more helpful. There, the medical community has started to partner with people living with Alzheimer’s. Researchers and physicians are as interested in studying how to treat Alzheimer’s as they are in developing a cure.
For patients in Canada and the United States, the story is different. With few exceptions, people who are diagnosed with Alzheimer’s walk out of the doctor’s office with a drug prescription and a sad pat on the back.
But Ron knew that he didn’t have time to wait for scientists to develop a magic pill or laserbeam therapy. He had watched his two brothers die from Alzheimer’s and vowed to do everything he could to avoid the same fate.
So Ron did what most people would do: he went online. Hour after hour, he combed through mountains of suggestions, advice and ideas. Take these supplements. Do puzzles. Do crafts. Exercise. The sheer volume of information was daunting. Ron was willing to do anything to stave off Alzheimer’s…but what really worked? Despite the endless amount of information available at his fingertips, there was no way for him to separate the hype from the hope.
The ideas and suggestions that he found were interesting but without methodological data collection and consolidation, they were largely useless to a pragmatic person such as Ron. He wanted to see studies and surveys and the scientific method. This was the fight of his life and he wasn’t about to leave the war planning to random online sources.
Unable to find what he was looking for outside of himself, Ron turned inward. He listened to his intuition. His intuition told him that the brain was like a muscle and that if he didn’t use it, he would lose it.
So he started treating his condition with with purposeful learning. The first year after his diagnosis, Ron learned Spanish and French. At the end of that year, however, Ron felt that the “treatment” wasn’t working as well as he wanted it to so he enrolled in University.
Since then, Ron’s self-directed treatment protocol has expanded to include extensive physical exercise, creative expression and most importantly, socialization. He didn’t design this on purpose but rather he built on his existing strengths, abilities and interests.
He has always enjoyed long walks and so he has continued to walk. Ron walks at least five kilometers a day, sometimes ten or fifteen. His wife calls him Forrest Gump because when Ron starts walking, he’s thinking of all the other things on his mind and forgets where he’s going. But he never gets lost. This is one of the benefits in living for a long time in a smaller community: he can always ask somebody how to get home.
He has always enjoyed working with his hands and so he has continued to work with his hands. Woodworking is a particularly enjoyable hobby of his and he spends a lot of time out in his workshop, puttering. Unintentionally, Ron is exercising his fine motor control, depth perception and spatial reasoning “muscles” every day.
One of the most vital components of Ron’s individualized treatment program is socialization. Attending classes and study groups, he meets new people all the time. The fact that most of his classmates are sixty years younger than he is makes it that much more enjoyable.
"A lot of older people should get to know the younger people. I find that very therapeutic. And the kids love it, too." - Ron Robert
Older people tend to label Millenials as self-involved, shallow or any of a handful of other negative adjectives. Ron, however, finds them to be the exact opposite. He revels in the new friendships he has developed with these young people whom he finds to be compassionate, intelligent and brave.
In an ideal world, scientists would be studying Ron. They would be doing cognitive assessments and brain scans on a regular basis to track changes and identify what is working. For now, however, Ron is essentially studying himself.
He is convinced that all of this — especially going back to University — has held his Alzheimer’s at bay. His long-term memory has actually improved although he finds that his short-term memory gets a little bit worse every day.
Earlier this year, Ron spoke to a group of about 200 researchers at an Alzheimer’s symposium. When it dawned on him that exactly zero of the researchers were living with an Alzheimer’s diagnosis, it got him thinking: why are people with Alzheimer’s excluded from research?
Ron may be diminished but he is not incapacitated. He can still do many things, and so can the hundreds of thousands of Canadians living with this diagnosis. Persons living with dementia, like other disabled adults, must be involved in scientific research not as lab rats but as lab partners. Lab rats are sacrificed. Partners contribute.
Ron has discovered that many of his classmates who are living with other types of disabilities feel the same way: like they are guinea pigs. Researchers come and ask questions and then send them on their way while the “professionals” retreat to their laboratories.
Most of the researchers are medically trained and to an extent they behave as if they own the research, as if they own Alzheimer’s. But Ron and other disabled persons disagree. They want to be able to help themselves as well.
The medical community must come alongside persons living with Alzheimer’s and other forms of dementia to see what non-pharmacological treatments are working for individuals. Certain things are working for Ron and other certain things are working for other people but that data isn’t being collected and analyzed. Hundreds of people around the world are living rich and full lives a decade after being diagnosed. Figuring out what they are doing, turning that data and information into knowledge and power for other people who have been diagnosed…this is a key area where Alzheimer’s researchers can contribute. Not just studying the brain (which is very important!) but also the methods that people are using to successfully keep the condition at bay.
Until researchers choose to partner with them, persons living with dementia must continue to learn, to fight and to grow. We all know, individually, what we are capable of doing. Find something you’re really interested in and do it!