Ron Posno was diagnosed with dementia in 2016 and almost immediately became involved in his local Alzheimer’s Society so he could learn more about living with dementia and find support.
“You can’t deal with it by denying it,” says Ron. “It’s important to get real about what’s happening. If you’ve fallen and broken your wrist, you’re not afraid to get help. It is a bit like that. Get real, get help and get ready. Find out how your life is going to evolve. Be prepared, not scared.”
Through his involvement with the Alzheimer’s Society, Ron was introduced to the Driving and Dementia Roadmap (DDR), a free online resource that was developed by researchers at Baycrest, Sunnybrook and the Canadian Consortium on Neurodegeneration in Aging (CCNA). Its goal is to empower older adults living with dementia to make informed decisions about when to stop driving.
Ron and his wife, Sandy, were watching one of the video resources about driving, dementia and safety in the community from the DDR website in preparation for a workshop, and that video helped Ron come to a decision.
“I decided right then and there that I was going to stop driving,” he says.
While the decision was swift, it was not insignificant. Ron says he has always loved driving, describing himself as a very active driver who first learned by driving farm equipment when he was young.
“I competed in rally driving early in my 20s; I was an airplane pilot. Driving has always been a large part of my life,” Ron says, adding driving has been part of his and Sandy’s relationship and experiences together as well: they’ve driven across the country several times, and all through Europe.
But Ron has known, since he was diagnosed with dementia, that he was going to have to stop driving eventually.
“To me, it has always been a question of when am I going to stop, not if,” he says. So, when he and Sandy were watching one of the DDR resource videos on how dementia can impact one’s driving and how the risks will inevitably increase, it resonated strongly.
“I decided to stop driving because I couldn’t stand the risk of possibly being responsible for hurting somebody when I was driving,” he says.
Planning Ahead
Doctors say driving is about much more than getting from point “A” to point “B.”
“Driving gives an individual a sense of identity,” says Dr. Mark Rapoport, geriatric psychiatrist, acting head of Geriatric Psychiatry at Sunnybrook and one of the researchers behind the DDR website. “Driving helps a person be more independent, enables them to be a part of social circles, and go to activities they enjoy.”
Dr. Rapoport says the DDR provides strategies that can help individuals and their families plan ahead.
“It may be that a person gets around with the help of family, friends, rideshare, or various transportation support services,” says Dr. Rapoport. “We want people to keep living their best lives, even after they stop driving.”
Ron says one thing that, for him, has made the decision more manageable is that Sandy drives, and he has several friends who live nearby and can drive him places as well. Sandy says it’s required some adjustment to their schedule, but overall, it’s been a smooth transition.
“We had to start thinking, whenever we scheduled things, one driver. Our scheduling has changed considerably — booking appointments so both of us go at the same time, or doing the groceries together instead of Ron doing them alone,” she says. “It’s working out quite well, though. Nothing to worry about, just small changes.”
Dr. Rapoport adds that: “The DDR encourages people with dementia and their families to have a more robust transportation plan that avoids having all the driving taken over by one family member.”
Sandy says she found the DDR resources for family members and loved ones of individuals with dementia an accurate reflection of what individuals and families are going through during this decision to stop driving.
“There are excellent suggestions in the videos for how people can approach this conversation about driving with a loved one who has dementia,” she says. “How a friend can do it, how an adult daughter can do it. And all the frustration that the person with dementia can experience as part of the process — I think that’s good for anyone in the family to see.”
The DDR has also been recognized by the World Health Organization (WHO) as a dementia resource on the WHO’s Global Dementia Observatory Knowledge Exchange Platform.
“Among many other topics, the Driving and Dementia Roadmap helps users understand how dementia can impact driving; identify when it becomes unsafe for individuals living with dementia to drive; deal with the emotional aspects of driving cessation; and adjust to life without driving once the decision has been made,” says Dr. Gary Naglie, geriatrician, researcher and Vice-President, Medical Services & Chief of Staff at Baycrest.
Dr. Mark Rapoport says this resource meets a need for patients and families that wasn’t there before.
“In my work in the field of geriatric psychiatry, over time I found that patients and families identified the need for easily accessible and credible information about driving and dementia and driving cessation,” he says, adding the DDR is the first time helpful materials have been curated into a one-stop-shop website that includes resources useful for all provinces and territories in Canada.
Making the decision to stop driving
“Driving is part of my identity, not just in terms of my independence, which is very important, but also, I’ve always thought of myself as a good driver,” says Ron. “I’ve enjoyed driving and it did become part of who I am. That’s a huge issue for me, and for other people.”
When he thinks of advice that he would offer about how to make the decision to stop driving, he says there isn’t an easy answer, but he does say individuals with dementia need to acknowledge that it’s “when, not if” they will have to stop driving.
Ron says part of what makes the DDR website such a “phenomenal resource” is that it’s helping people understand and make personal choices about their own driving ability in a way that’s non-threatening and supportive.
And he says, in addition to the DDR website, the Alzheimer’s Society of Canada provides excellent support for people with dementia as they navigate their diagnosis.
Where to find more information on the DDR website resource
People with dementia, as well as family members or other loved ones, can access the resources available on the DDR website for free, but should also be in contact with their healthcare provider for guidance, advice and support in making the decision about driving and their overall dementia journey, as the website is for educational and informational purposes.
Ron and Sandy are grateful to the team of researchers who created the resource and helped them come to the decision that it was time for Ron to stop driving.
The Posnos add they continue to enjoy life and their daily activities. Ron says, they simply plan ahead.
“What we do now is focused on what we can do.”
To learn more about the DDR website resource: drivinganddementia.ca
Read: Driving and dementia: How to know when it’s time to stop driving
