Van Buren volunteered to start leading “Life Reimagined” workshops for AARP. Then he started getting his own life in order.
He lost 40 pounds and got his blood sugar levels under control. He got a CPAP machine and slept eight hours a night for the first time in as long as he could remember. He felt physically better and noticed improvements in his memory, too. He no longer struggled to finish his sentences.
After two successful careers in psychology and aviation with minimal personal expenses (there’s no need to turn on the lights, buy groceries, or fill up a car when you’re 35,000 feet in the air), Van Buren was better off financially than the average older person. He could afford a caregiver, but wasn’t yet ready to give up the privacy of living alone, nor do his current symptoms require round-the-clock care. Instead, he got Alexa, the virtual assistant in Amazon’s Echo.
“I come in and say ‘Alexa, my keys are in blah blah blah.’ So when I’m searching for my keys, I say ‘Alexa, where did I put my keys?’ and she’ll tell me,” says Van Buren. “She runs everything in my house: electricity, air conditioning, even my doors.” iPhone calendar reminders are also a must, as is the GPS system in his car that reminds him where he’s going and how to get there. He still drives, but is aware that his days behind the wheel are limited, and has been using Uber to get around more often.
“A couple weeks ago I went to church with my clothes inside out,” Van Buren said. “Everybody in my church knows I have Alzheimer’s. They took me aside and said, ‘Brian, your clothes are inside out,’” he says. “Had I lived with somebody, they would have recognized that.”
Isolation was the next thing to tackle. Van Buren’s home had a guest bedroom and an extra bathroom, so he signed up as a host with Couchsurfing, an international network of people who offer space in their homes to travelers for free. Hosting, he reasoned, would let him have the independence he valued and someone to talk to.
On his Couchsurfing profile Van Buren describes himself as “well grounded with a very outgoing personality,” with interests including cooking, theater, traveling, and the Dementia Action Alliance Advisory Council. Under the section “One Amazing Thing I’ve Done,” he put 11, including meeting Princess Diana and Tupac Shakur. In April he hosted his 112th guest.
There are some things that the disease has already made impossible. Van Buren had a relationship recently, he says, but it disintegrated under the strain of his periodic and uncontrollable bouts of depression, paranoia, and anger, common at this stage of Alzheimer’s. So, he says, dating is probably out.
His dementia has a manic component. In 2017 he bought four televisions over a single weekend. In the same year, he bought three new cars. Antique stores were a problem.
A life coach in Charlotte helped him set limits around his spending. In 2018, he didn’t visit a single antique store. He and the coach meet weekly now to talk about things: his emotions, his frustrations, the management of his increasingly complicated life. “What’s her name?” I ask him.
“Okay. Wait a minute, let me think,” he says, closing his eyes with the effort of recall. “See, I can’t remember it. That’s what happens. If I think about it for two or three minutes…” He trailed off, then shook his head, not so much in frustration as in wonder. “I see her every week.”
When Van Buren meets new people, he hands them a business card. “Please be patient with me,” it reads. “I have dementia and may: Repeat questions. Forget what you have told me. Take longer to make a decision. Thank you!”
The card is from the Dementia Action Alliance, a nonprofit advocacy group that works with patients, caregivers, and communities to improve services for people with dementia. Van Buren now sits on its advisory board. He is a frequent speaker at conferences, podcasts, and anywhere else he can stand up and offer the message he clung to at his lowest point, the one that saved him: Life is not over yet. You can live with this disease.
There is no denying that dementia, even on good days, is frustrating and disorienting, for patients and family caregivers alike. As he readily admits, Van Buren’s relatively secure financial situation is an advantage: When his condition progresses, he will have the resources to hire caregivers, enabling him to stay in the home he loves. If that’s no longer a safe place for him, he will have access to quality alternatives. Van Buren’s post-diagnosis path is only one of millions, each with their unique sets of challenges and privileges.
Still, examples like Van Buren’s offer alternatives to what Dementia Action Alliance executive director Karen Love describes as “the tragedy narrative—that once you are diagnosed it’s all downhill from there, you need to do your end-of-life planning.”
The longer people remain in public life following a dementia diagnosis, the more visible the disease becomes, and the easier it is to get communities to understand why it’s worth making the small adjustments that ease life for people with that condition. That can mean anything from training customer service employees to speak slower and offering pared-down menus at restaurants, to instructing police on how to recognize when a person accused of shoplifting or public disturbance has a cognitive disability.
“How many people are not going out of the house because we as a society haven’t given them the tools they need?” Love asks. “The biggest change, the biggest tipping point I think, are baby boomers.” An outsized generation that has demanded alternatives to virtually every system and challenge it has encountered will likely also do the same for aging and dementia.
There is no negotiating with the biology of degenerative brain disease. There is room, however, to rethink what life looks like after a diagnosis—to see it as the beginning of a different and unexpected phase, rather than simply the start of the end.
“My life was stagnant for 20 years” before diagnosis, Van Buren says. For him, the gravity of the diagnosis shook him out of a decades-long funk, and gave him a new purpose: to show people what life with dementia can look like. “You can thrive, not just live. I travel all around the world, still,” Van Buren told me just weeks before he departed for South Africa with a friend who also has dementia. “You can do everything.”