When should someone with dementia stop driving? This resource helps seniors decide

Ron Posno enjoyed the freedom of driving a car.

He says was hooked the minute he sat down as a teenager in a family friend's old Ford truck and started the engine.

"I loved it," said Posno, 83, of London, Ont.

But now, more than 70 years later, Posno has decided to hang his car keys up for good. He says the decision came after two kids on bikes passed in front of his car unexpectedly while he looked over his shoulder before merging into a busy intersection near his home.

"Well that terrified me, because if I had started, I would have run into them, no question."

He says he knew that he would eventually have to stop driving after being diagnosed with dementia in 2016. But it wasn't until he had the recent scare and watched a video on driving and dementia that Posno realized it was time.

"I don't really ever want to be in an accident where it hurts somebody or worse — to kill somebody — when I have a choice. So I'm getting out of driving now," he remembers telling his wife, Sandy.

Decision can be emotional

Posno's decision to stop driving isn't usually what happens with people with dementia, doctors say.

Often, physicians see people when their dementia has progressed into the later stages and driving is no longer safe, said Dr. Mark Rapoport, a geriatric psychologist and acting head of geriatric psychiatry at Sunnybrook Health Sciences Centre in Toronto.

"So we have to be the bearers of bad news that driving has ended," he said.

After years of those often difficult conversations with patients, Rapoport and colleagues from Sunnybrook, Baycrest Health Sciences and the Canadian Consortium on Neurodegeneration in Aging created a new online resource.

They call it the Driving and Dementia Roadmap. It's a website with information, videos, worksheets, and other materials to help someone understand the importance of giving up driving — and when to do it. There's also information for care providers on how to broach the subject.

Doctors say there is a huge need for this type of resource, as the number of Canadians with dementia is expected to grow substantially in the next decade.

LISTEN | Dementia and driving: 

Since it launched in October, doctors involved with the roadmap say it has been popular with Canadians looking for more information. It also has attracted the attention of the World Health Organization, which selected it as a credible dementia resource.

It's information that is badly needed, said Dr. Gary Naglie, professor of geriatric medicine at the University of Toronto and vice president of medical services at Baycrest.

He says it can be very hard to tell a patient they can no longer drive, as it brings up many emotions.

"I've been fired more than once by patients after I've had to do this. It's just a very difficult thing to do," said Naglie, who helped create the roadmap.

"It certainly made me keenly aware that people's understanding of this issue is extremely limited."

Why there comes a time to stop driving

Dementia is an umbrella term that is used to describe symptoms affecting brain function, often characterized by a decline in memory, planning, judgment, language, as well as physical changes like loss of co-ordination. It commonly is diagnosed in those 65 and older, but those who are younger can also be diagnosed (though less common).

Canada's population is aging, and projections show that the number of people with dementia will grow. In 2020, 597,000 Canadians were living with dementia, according to the Alzheimer Society of Canada. That number is expected to almost double by 2030.

Dementia is a chronic condition, and physical and mental symptoms generally worsen over time.

Most people in the early stages of dementia can still drive. But as dementia progresses, it will start to put the person at risk of potentially dangerous driving behaviours like slower response times or driving through stop signs or red lights, notes the Alzheimer Society of Canada.

Since dementia can also affect someone's memory, it could lead them to get lost while driving. Visual perception is also altered over time, so backing into a parking space or gauging the distance of other vehicles can become challenging, said Naglie.

The progression of the condition is why he says it's so important to have conversations about driving or other aspects of care early in a diagnosis.

Researchers have shown that if a person with dementia is part of the care planning early on, then you get "much better results," Naglie added.

"We can't keep doing what we're doing, which is not talking about it, because I've seen the consequences of that. I've experienced the consequences of that. It's not fun for anyone and it's a terrible result for the adult with dementia," Naglie said.

Instead, he recommends using the roadmap to:

• Broach the conversation about driving with the individual with dementia.

• Make a plan for when they're no longer able to drive.

• Manage when the person with dementia won't stop driving.

All provinces and territories require doctors to report medical conditions that affect driving.

In Ontario, a person with dementia may be also required to do what is called a functional driving assessment to keep their licence. Family members and the individual can also request this medical assessment and on-road evaluation.

'We're on their side'

Nellemarie Hyde, an occupational therapist and program supervisor at Saint Elizabeth Health Care in Toronto, is part of that assessment.

She says the process isn't always easy for seniors with new medical conditions like dementia.

"They're generally always very nervous. Sometimes they're angry or annoyed at having to do this. Our goal, we tell them right from the get-go, we're on their side [and] we want them to do as well as they can," Hyde said.

For many, driving isn't just about going from point A to point B, Rapoport says. Driving can be connected to a person's identity and autonomy.

"It's also a harbinger that other changes are coming. It's one of the key areas of transition in dementia, very similar to preparing for a transition to long-term care," he said.

Posno says he misses the freedom of just hopping into a car and driving himself to a doctor's appointment or the grocery store.

"But do I regret having to do it? No way."