“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

The post How the Driving & Dementia Roadmap helped Ron make an important decision appeared first on Your Health Matters.

Complex concerns come with determining when it’s time to hang up the keys: How can this topic be approached in a respectful way with loved ones? Can a plan be created for the future so that the person with dementia can continue to enjoy activities after they’ve decided to stop driving?

Dr. Mark Rapoport, geriatric psychiatrist, acting head of Geriatric Psychiatry at Sunnybrook, and one of the researchers behind a new Canadian online resource called the Driving and Dementia Roadmap shares insight into how individuals with dementia and those close to them can face this challenge together.

What is dementia?

Dr. Rapoport: Dementia occurs when a person experiences changes or a decline in memory, and the ability to think, problem solve, or make decisions, that are significant enough to affect their daily life and everyday activities. Although dementia is most common in older adults, it is not a ‘normal’ part of aging.

The Alzheimer Society of Canada says dementia impacts more than 600,000 people in Canada. It’s estimated that by 2030, one million Canadians will be living with dementia.

When is it time for a person with dementia to stop driving?

Dr. Rapoport: Some concerns around driving that are common with dementia can include forgetfulness or getting lost in familiar places. If a person is feeling unsure or anxious while driving or if there are any safety concerns expressed by family or friends about the individual’s driving abilities, it is important to seek information and the advice of a healthcare professional for next steps.

Some individuals with mild dementia may continue to drive safely and some may have to stop driving right away. It’s important to be aware that as the disease progresses, they will inevitably have to stop driving. It can be difficult to know exactly when driving has become or will become unsafe.

After receiving a dementia diagnosis, it is critical for the individual and their family to watch for changes in that person’s driving and consider whether they can continue to drive safely.

For people with moderate or severe dementia, driving is dangerous as the brain functions needed to react quickly and make rapid decisions for safe driving have deteriorated. By these stages, driving must stop.

What is the Driving and Dementia Roadmap?

Dr. Rapoport: The Driving and Dementia Roadmap or drivinganddementia.ca, is a free, online, and Canadian resource created to help older adults living with dementia, their family, friends, and healthcare teams, and provide them with information around the decision to stop driving.

The Driving and Dementia Roadmap was developed by researchers from Sunnybrook, Baycrest, and the Canadian Consortium of Neurodegeneration in Aging.

I have been working in the field of geriatric psychiatry for many years, and over time patients and families identified the need for easily accessible and credible information about driving and dementia and driving cessation. This is the first time that helpful materials have been curated into a one-stop-shop website that includes resources useful for all provinces and territories across the country.

The Driving and Dementia Roadmap website includes information, videos, worksheets, as well as strategies to help people living with dementia and their families navigate the challenging conversations, emotions, and planning that comes with the decision to stop driving.

Making a plan for the future

Driving cessation is a major life change for a person with dementia. There are often concerns about a loss of independence or identity.

It is important to include the individual with dementia in discussions about driving. This can help in creating a plan and making alternative transportation arrangements for when the person can no longer drive. The website provides strategies to ensure that the person with dementia continues to live a fulfilling life even after driving stops.

The Driving and Dementia Roadmap website doesn’t provide individuals with recommendations about their driving. It is for educational and informational purposes. Patients and families are strongly encouraged to reach out to a qualified healthcare provider with any concerns for their guidance, advice, and support as they navigate the driving and dementia journey.

Read the news release to learn more about the Driving and Dementia Roadmap.

For more information go to: drivinganddementia.ca

The post Driving and dementia: How to know when it is time to stop driving appeared first on Your Health Matters.