Life doesn’t end when driving does
A CIHR-funded online roadmap helps people living with dementia, and those who care for them, navigate the realities of giving up driving.
“I was waiting to make a right-hand turn and three or four kids on bicycles suddenly appeared,” says Ron Posno, who lives with Alzheimer’s disease. “That frightened me. Was my failure to see these kids coming because of my dementia?”
This incident was a turning point for Posno, leading him to stop driving, turn in his licence, and donate his car.
Driving is often considered a cornerstone of independence, allowing people the freedom to make decisions about where they want to go and when. But for older adults, a dementia diagnosis can change everything.
Dementia can cause slower reaction times, difficulties judging distances and speed, and disorientation. As dementia progresses, driving performance gets worse, leading drivers with dementia like Posno to hang up their keys for good.
As clinicians, Mark Rapoport and Gary Naglie know how difficult this can be. “It’s a major life transition to stop driving. It can have many negative health implications, like functional and cognitive decline, and can even shorten life expectancy,” explains Naglie, a professor of geriatric medicine at the University of Toronto’s Temerty Faculty of Medicine and Vice President, Medical Affairs and Chief of Staff, Baycrest Hospital and Long-Term Care.
“Patients show up in our office and at times we have to tell them: You have to stop driving,” says Rapoport, a professor of psychiatry at Temerty Medicine and staff psychiatrist at Sunnybrook Health Sciences Centre. Too often, these conversations happen past the point where drivers can be involved in the decision to stop driving, leaving them with little time to prepare.
To change that, the researchers developed the Driving and Dementia Roadmap: an evidence-informed online resource designed with partners with lived experience like Posno to support driving decision-making for people living with dementia, their caregivers, and their health care providers.
One portal is designed for people with dementia who are still driving. “Wouldn’t it be better to empower them to make decisions about when it’s time to stop?” Rapoport points out. Drivers can access information about how dementia affects driving, recognizing when it becomes unsafe to drive, how to get around without driving, and importantly, dealing with the difficult emotions that can come with driving cessation.
“We’ve got to get the message across to people with dementia of any form that you don’t hide in the bushes about it. You should talk to your family and friends about your dementia and how it’s affecting you,” says Posno.
Another part of the resource focuses on people with dementia who have already stopped driving. “We didn’t want them to stop living, to stop doing things that matter most to them,” says Rapoport. “There’s still life after you stop driving.”
A portal for family and friends of people with dementia provides guidance on having conversations about giving up driving, planning ahead, and what to do if the person with dementia won’t stop driving.
Since its launch, nearly 50,000 people from around the world have accessed the website, highlighting the demand for practical tools that address both safety and the emotional aspect of driving cessation.
As a next step in their work with drivers with dementia, the researchers will use in-vehicle sensor technology to monitor the driving patterns of older adults with mild dementia. The goal is to develop a more accessible and less costly alternative to the specialized on-road driving tests often used to determine if an older adult should still be driving.
This work is about ensuring that people living with dementia are involved early and meaningfully in decisions about driving. “If people with dementia are able to participate in the decision-making to stop driving, the outcomes tend to be much better,” notes Naglie.
This article was originally written by the Canadian Institutes of Health Research.
