University can be hard. It’s even harder when you’re 81 and have Alzheimer’s

Three years ago, Robert was diagnosed with Alzheimer’s, a degenerative, fatal brain disease that is the most common form of dementia. He lost two brothers to the disorder. He recalls they didn’t do much to try to counteract it; they just let Alzheimer’s consume them.

Robert is fighting back.

At 81, he is enrolled at King’s University College in an attempt to slow Alzheimer’s. Robert thought if he exercised his brain and repeatedly challenged himself mentally, he could maintain the quality of his life. Maybe even improve it.

“Alzheimer’s actually is almost like a blessing for me,” says Robert, who spent much of his working life as a political journalist.

“I was retired; doing nothing really. I was bored silly. Then I got diagnosed with it and I thought, I can’t just sit around and let it take over. I’ve never believed in just rolling with the punches. I’ll punch back.

“Now, I’m going to university. I have to get up in the morning and go out and catch the gall-darn bus. Then I come here and I meet all of these young people and the professors. They’re great to talk to. Then there’s the courses. I’m finding them fascinating. It’s like a new door opened.”

More than half a million people live with dementia in Canada, with Alzheimer’s accounting for about 65 per cent of those. With an aging population, that number is expected to double within 15 years. Irreversible, Alzheimer’s destroys brain cells, impairing thinking and memory. Other symptoms can include changes in mood and behaviour.

Robert noticed his life was taking a medical turn when he started losing his sense of direction. He lived only 10 minutes from his golf course but the easy drive, one he’d made countless times, began leading him to unfamiliar neighbourhoods.

Robert saw these puzzling detours as a big adventure. But when he started forgetting things around the house — even taking out the garbage was a memory challenge — his wife encouraged him to get tested.

Even though Robert had a family history of dementia — his sister and uncle also died with a brain disease, and he suspects his father was also a sufferer — he felt both shocked and lost when he was diagnosed, particularly because of the finality of the doctor’s pronouncement. The physician phoned and essentially dismissed him with a “You’ve got Alzheimer’s. You’re going to lose your driver’s licence,” Robert says.

There was, says Robert, “nothing about where to go or what to do next. There was no counselling.”

Entering a world of uncertainty, Robert relied on his instincts. He developed habits that Alzheimer’s researchers believe are among the most important to possibly prolong brain health and reduce the risk of dementia in the first place.

At university, he tries to stimulate his brain by writing essays and exams; he didn’t think school would be helpful unless he was challenging himself to pass. He exercises daily — experts say cardiovascular workouts are particularly helpful — and he easily mixes and mingles with students a quarter his age. Researchers say socializing is also beneficial.

“He’s effectively helping to build a more resilient brain, so that the disease has a harder fight because he has a richer neural network,” says Nicole Anderson, a senior scientist at the Rotman Research Institute, Baycrest Health Sciences, who studies maintaining brain health as part of her research.

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Robert walks five to 15 kilometres daily. The strolls along streets and through parks free his mind to formulate ideas for school assignments.

“I get deep in thought all the time and I get lost so often, it’s unreal,” he says. “But people are great. They’re always willing to help and point me in the right direction so I never really feel lost. I feel confused but that’s normal and that doesn’t bother me.”

That willingness to ask for help — fellow students will walk him to class sometimes — and self-effacing humour are two of the gregarious octogenarian’s coping tools.

When he laments that Alzheimer’s, and deteriorating eyesight, have forced him to give up carving bird decoys and cabinet making, hobbies that helped fill some of his retirement hours, any hint of self-pity is quickly washed away with quip, a twinkling eye and a throaty laugh.

“I wouldn’t touch a power saw at this stage,” he says. “I’d likely cut my hand off and then I’d forget what I did with it.”

Robert found the path to academia when he did his own research on dementia. With no effective medication to stop Alzheimer’s, he read that learning languages was one way to stimulate the brain and, perhaps, slow its progress. So he studied French and Spanish on his home computer for a year. He felt it did nothing for his brain.

That’s when he decided to return to school. Robert first visited Western University but, easily flummoxed by directions, he was intimidated by its sprawling campus.

Instead, his daughter suggested Wilfrid Laurier University, a much smaller school in Waterloo. Robert had surrendered his driver’s licence, but he could live with her in Kitchener and take classes there. Laurier’s academic advisers encouraged Robert to audit courses but he wanted to tax his brain with homework and exams. He loved his year there but commuting from London every Sunday and returning Thursday — Robert’s wife, Catherine Cornelius-Robert, drove — wasn’t ideal, especially in the winter.

Then he discovered King’s, affiliated with Western. Its compact campus was perfect, as was the support it offered students with disabilities.

Robert also has macular degeneration — he figures his eyesight is about 50 per cent of what it was — and the school set him up with a special computer and software at home that allows him to dictate his essays. He also receives accommodation in the form of extra time and a quiet, private space when writing exams.

But what Robert is doing is not easy.

He is taking two courses — politics and forensic psychology — and there is extensive reading for both. Due to his struggles with short-term memory, Robert says he often has to read a passage three times before it sinks in. Sometimes, he’ll be studying a textbook and if there are academic citations embedded in the narrative, it can distract him and cause him to forget the preceding content.

“My short-term memory is terrible,” he says. “I can listen to something and be very interested and then I’ll forget what it was until someone reminds me. What bugs me is the most is I worked so hard to develop a vocabulary and now I can’t remember the words I learned. I pause a lot when I speak because I forget words and I have to substitute a different word. Some days I’m frustrated. Other days, I’m just slightly annoyed and I’m fine.”

While some who suffer with Alzheimer’s become reclusive or attempt to hide it — or their families try to keep it secret — Robert decided to be completely open. He hopes it will encourage others to make the most of their lives even if they have been diagnosed. His example may also, he believes, help break down the stigma associated with dementia.

A 2017 survey commissioned by the Alzheimer Society of Canada found that 58 per cent of Canadians believe people living with dementia will experience being ignored or dismissed, 27 per cent believe their life would be over if they had dementia and 20 per cent would avoid seeking help for as long as possible, perhaps to avoid embarrassment.

Spend time with Robert, though, and you’ll probably hear him declare: “I may be diminished but I’m not incapacitated.”

“People say, ‘You don’t look like you’ve got Alzheimer’s.’ But what the hell does Alzheimer’s look like?” he says.

“I feel it is part of life. As you get older, you have all kinds of bumps in the road. You don’t avoid those. If you have a problem, you have to adapt. You don’t give up.”

Robert does public speaking on behalf of the Alzheimer Society and appears in its educational material and awareness programs. He has become a role model for what living with the disease can be and how people with it are perceived.

“He’s an anomaly in some ways because, of course, not everyone goes back to university,” says Mary Schulz, director of education for the Alzheimer Society of Canada. “But he’s not in others,” she says, noting many people with dementia remain actively involved in society.

“We hear from people with dementia all the time that what really frustrates and annoys them and sometimes almost immobilizes them is the impression they get that the minute they’ve had a diagnosis of dementia, people fast-forward to the later and the end-of-life stages of the disease.

“So if I were diagnosed tomorrow, as capable as I am today, all of that is wiped out in the blink of an eye with a diagnosis of Alzheimer’s disease or another kind of dementia, yet nothing has fundamentally changed from today to tomorrow.”

Schulz says that while Robert is “imploding” stereotypes, it’s important not to oversimplify what people like him are doing.

“I wouldn’t want a casual observer to look at and say, this dementia thing is no big deal, people can go to university,” she says.

“It can be somewhat of a Herculean task for someone with dementia to go back to university, engage in their communities, become an advocate for people with dementia — whatever it might be — but the point is they can still do it, especially if they are given the right support.”

On this day, late in the second semester, Robert is seeking some of that support. He has settled in at a desk at The Write Place, a workshop in King’s Student Life Centre. Students can come here for help with essays and assignments. Beside him is tutor Lisa Kovac. She is helping him finish his final politics paper. Kovac is blind.

In a remarkable example of how technology — and determination — can help overcome barriers, the two work together editing a draft of Robert’s paper on the participation of Indigenous Canadians in Parliament.

Robert wrote it using dictation software called Dragon NaturallySpeaking. He’s typed all his life but now has trouble finding some of the punctuation keys, and his eyesight offers little help. He is able to make corrections with Keys U See, a large print keyboard that has black lettering on bright yellow keys. Even with the oversized lettering, Robert wears magnifying glasses. When he’s reading printed reference material, depending on the font, he will sometimes also look through an additional hand-held magnifying glass.

Robert then transfers his finished paper to a USB flash drive and takes it to Kovac, who plugs it into a laptop equipped with JAWS — Job Access With Speech — that allows her to listen to Robert’s essay. She also has a Braille display. Using it and the speech synthesizer allows her to make suggestions. Mostly she offers ideas about phrasing and sentence structure to improve clarity, which Robert writes out in longhand for later reference at home.

“This shows people that you don’t have to let whatever you have limit you,” Kovac, who has a master’s in English, says to Robert.

“A lot of people think it’s a really scary thing to have Alzheimer’s and people who have it, a lot of them, stop doing things. And you’re just out doing completely new things, which is lovely.”

Robert, though, first had to overcome some hurdles. He was deeply afraid to ride the London Transit buses, apprehensive that he’d board the wrong one, misread the schedule or get off at an unfamiliar street. So he wrote out the directions and referred to them often. He was also worried about his stamina so he began a walking program to get in shape for school.

Robert is in lectures and tutorials about eight hours a week, spread over three or four days. During his politics tutorial, an onlooker might think him out of place with his tightly cropped grey hair, cane hooked on the desk beside him and ballpoint at the ready. But Robert is fully invested in the course, this day offering his opinions on everything from lessening society’s wealth gap — recalling ideas for a flat tax and guaranteed annual income former federal Conservative leader Robert Stanfield once discussed with him over lunch — to modern monetary theory. The other students clearly value his opinion.

“He has experience in most things we talk about in class,” says Trevor Moore, 21, who always sits beside Robert and helps him with his note taking. “It’s very insightful to hear what he has to say, especially in politics.

“There are people he’s worked with that helped implement programs that we’re now learning about.”

Robert could probably teach units of his politics class. He worked for prime minister Pierre Trudeau and he once counted several provincial premiers, including Peter Lougheed and Tommy Douglas, as pals and colleagues.

Although he rubbed shoulders with Canada’s ruling elite, Robert didn’t have any post-secondary education. Having grown up in a poor neighbourhood in Halifax, he quit school at 15 to dig gas-line ditches in B.C. That lack of formal schooling was always a nagging insecurity for him; particularly after he became an adviser for Trudeau in the 1970s. It was in the back of his mind when he found himself verbally sparring with the sharpest political minds in the land.

Robert had stumbled into journalism. After leaving the Okanagan, he moved in with the family of a friend in Saskatoon. The father in the home mentioned that a local radio station needed someone to write a commercial, for Penny Matches. Robert gave it a shot and voiced it. That ended up being a successful audition and, at only 16, he began filling in on news coverage.

“What a fluke,” he says. “Imagine doing that today?”

As sometimes happened in those days of being-in-the-right-place-when-needed journalism, Robert, with his smooth baritone voice, moved up the ladder until he was covering provincial legislatures in Western Canada. He honed that vocabulary he was so proud of by memorizing a monthly magazine feature called “It Pays to Increase Your Word Power.” He says he got his Reader’s Digest degree.

Reporting allowed him, on occasion, to interview Trudeau. During those one-on-one sessions, Robert would challenge Canada’s leader, suggesting the PM was alienating the provinces west of Ontario because he was preoccupied with Quebec. Trudeau appreciated his audacity and, in 1974, Robert got a call from the PM’s people with a job offer. After almost 25 years in journalism, mostly in radio, he would head up what was known as the western desk of the Prime Minister’s Office.

For three years, Robert took the pulse of Western Canada by meeting premiers, cabinet ministers and people on the street. He wrote reports for Trudeau on developing issues and acted as his advance man when the PM was planning a western swing. He basically tried to forge more of a connection between the west and the PMO.

“I’d come back from trips out west and I’d have to brief Mr. Trudeau. I was like a ball of sweat because I knew he already knew everything that was going on.”

After that job and a communications stint with the government, Robert, a Métis of Mohawk and French descent, moved on to do research studies with Chiefs of Ontario, a decision-making collective for Ontario’s First Nations. One of the studies centred on how Indigenous crafts people could make a living with their artistry. After he did that, he was asked to implement his plan.

That led to Indian Art-I-Crafts of Ontario, a non-profit based in Brantford, and to the launch, in the mid-’90s, of the Canadian Aboriginal Festival in Toronto, with Robert and Cornelius-Robert as co-founders. It was initially based in the SkyDome and lasted almost two decades. Robert and his wife also started the Canadian Aboriginal Music Awards in conjunction with the festival.

Eventually, with escalating costs, the money ran out. Robert and Cornelius-Robert even put their Brantford house up as collateral against the festival’s debt to try to save it. They ultimately lost their home. That’s when, about four years ago, they moved to London and began renting a townhouse.

“Holy mackerel, Toronto is a very expensive city to do anything in. It’s really unfortunate it didn’t last,” says Robert. “A lot of the vendors would make more than 50 per cent of their annual income out of that festival.”

Those long-eroded memories, particularly from his time on Parliament Hill, have been triggered by hearing names and events from the past in his politics class.

While it’s anecdotal and based on self-reporting, Robert is adamant that university is helping his dementia.

“If nothing else, I’ve held it at bay,” he says. “But I think I’ve done more than hold it at bay because of the long-term memory coming back. My short-term memory is still really bad. But I’m not as forgetful around the house and my vocabulary is coming back gradually.”

Robert still struggles with dates, names and numbers. He can’t, for example, remember his own phone number. But there is an obvious joy in his step as he makes his way around campus.

“I’m just finding that being alive socially helps a helluva lot. The social aspect of university is just as important, if not more important, than the learning part.”

Saskia Sivananthan, chief of research at the Alzheimer Society, says whether lifestyle changes can slow the disease remains an open question.

“The evidence around dealing with a cognitive decline is still building,” she says. “We do have some of the pharmacological treatments. Those help more with symptom management. For some people, it can stabilize the decline. With some of the other factors — the social activity, the diet, physical exercise, cognitive training — there is evidence to show that it can help support stabilizing the decline, but we need more evidence.”

Cornelius-Robert, 58, is convinced her husband has “definitely” slowed the advancement of the Alzheimer’s by attending university.

She has, for example, noticed that Robert seems more aware of directions. When they are driving around London he’ll recognize streets and suggest where to turn, using signposts he’s picked up while riding the bus.

She says her husband of almost 29 years is also more engaged around their home and much happier.

“The (students) are such great people to be around, it keeps him more enthused, more alive, I think.”

Anderson, the Baycrest scientist, says lifestyle changes can’t eliminate brain disease — Alzheimer’s will ultimately prevail — but by keeping an active mind and body, a person can “function at a higher level despite the fact they have brain pathology.”

She equates it to bodybuilding for the brain. Learning new things, she says, builds neuroplasticity, which helps your brain change over time and creates new connections between neurons.

Following Canada’s food guide — with its emphasis on fruits, vegetables, whole grain foods and proteins from sources other than red meat — can also help, as can quitting smoking. Essentially, what is good for the heart is good for the brain.

Anderson said if she could only recommend one lifestyle change, it would be to start or increase exercising. Even a walking program stimulates the birth of new neurons in a part of the brain called the hippocampus, a critical area for memory.

In hearing about Robert’s case, she surmises that “he’s getting the benefits from the academic learning but I bet the fact that he’s exercising is making that more effective.”

On campus, Robert frequently stops to chat with younger students. He says they’ll sometimes ask him advice about relationships, share opinions about a lecture or offer encouragement.

“I’m like the campus grandpa,” he says, a role he knows well. Robert has three children from his first marriage, 11 grandchildren, six great-grandchildren and one great-great-grandchild.

After politics class, one student, 28-year-old Tanys Taylor, catches up to Robert to tell him it is her fourth time returning to school and she finds him an inspiration.

“It’s a beautiful two-way street,” says a beaming Robert. “I love this generation. You remind me of the hippies. You care so much about social justice. That gives me optimism for the future.”

Robert feels he has benefited from his return to school so much that, even with worsening arthritis that has weakened his legs, he has decided that he wants to graduate. He’s going to try to achieve that with the students with whom he is currently studying. There’s been on-campus administrative talk of nominating him for an honorary degree so he can speak at commencement, but Robert wants to slog it out and earn his bachelor’s.

That will mean increasing his load to three courses a semester and taking additional summer classes but once he applies his Laurier credits, he should be able to get a BA in political science after two more years. So far, he’s been handling the workload.

After a slow start adapting at Laurier last year, he turned an early D grade in a political science course into an A on his final exam. This year, he says he is doing “very well” in politics but struggling in his psych course though he remains confident he will pass.

King’s offers a bursary for seniors that covers three credits’ tuition each year for students older than 60. There are 18 seniors enrolled. Robert is the oldest.

“I want to cross that stage with the kids,” he says. “I just want to be part of their whole experience. Walking across the stage by myself at my age doesn’t mean anything. Walking across with these kids, that gets me excited.”

Dean of students Joe Henry says the younger students learn life lessons from having Robert on campus.

“It reframes for many students what living, truly living, with Alzheimer’s looks like in our community,” he says. “I think it changes people’s perceptions in so many ways about what it means to age and how you can indeed have a fulfilling and productive life while also having this disability.”

Robert says he is “a fanatic” about spreading his message of hope off-campus as well, often sharing his experiences with others diagnosed with Alzheimer’s.

“A lot of them are really depressed,” he says. “So I try to encourage them to do something. Anything, but something. Don’t just let it take over. Sitting at home, watching television alone … that’s the most boring bloody thing you can do. It lulls you into letting your brain slip even more. You’ve got to keep the brain active. Don’t sit around thinking, Oh my God, I’m dying.”

He and Cornelius-Robert, from the Oneida Nation of the Thames, are also trying to start a program that would deliver health services to Indigenous people with Alzheimer’s.

“There’s a lot of reluctance in Aboriginal communities when doctors start talking to them about Alzheimer’s,” Robert explains. “First of all, they don’t like the term Alzheimer’s; they don’t really understand it. And they’re nervous about being sent to a home. Especially the older ones because they went through the residential schools, went through the Scoop in the ’60s (when children were removed from Indigenous families). They went through hell.”

Robert is well aware Alzheimer’s will ultimately win the battle for his brain.

“If it’s going to happen, it’s going to happen,” he says. “So I feel every day I get up, I’ve got to do something worthwhile. That’s important. I owe it to me, I owe it to my wife. I owe it to my children. It’s like a duty. If I last 10 years or two years, it’s going to happen whether I worry about it or not. So there’s no sense worrying.”