After the Dementia Diagnosis: When to Stop Driving: One-of-a-kind Canadian tool helps to make the hard decision

Older woman being helped out of a taxi cab.

ln honour of Alzheimer’s Awareness Month, CABHI will feature new content each week over the month of January.  

An early diagnosis of Alzheimer’s disease is one’s best chance for treatment. However, some people are hesitant to seek medical attention because they are afraid of losing their driver’s license – a main source of freedom and independence.

To that end, a team of researchers from Baycrest, Sunnybrook Health Sciences Centre, and the Canadian Consortium on Neurodegeneration in Aging (CCNA) have developed the first-of-its-kind Driving and Dementia Roadmap to help older adults living with dementia make informed decisions about when to stop driving.

Researchers at Sunnybrook learned that people with even mild dementia experience a decline in their driving skills compared with healthy drivers. In fact, drivers with dementia face double the risk of crashing, subsequently compromising themselves and other drivers.

A truly Pan-Canadian resource, the Roadmap provides information about transportation alternatives in each province and territory. Need transit for people with disabilities in Nova Scotia or Quebec? Curious about subsidies for getting to medical appointments in British Columbia? The Driving with Dementia Roadmap will help.

“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; 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.

“When my brother had to stop driving, he was so frustrated and angry, because that loss of freedom embarrassed him. Suddenly he was dependent on family and friends to get him to church, to the swimming pool, to the grocery store,” recalls Adam Hartford, his brother’s caregiver. “We were already trying to manage his shock and grief after he was diagnosed with dementia; the anger was unexpected. The Roadmap helped us find information and solutions when we needed them most.”

A chapter of the Roadmap focuses on how to deal with the emotional responses associated with giving up driving and provides a worksheet that helps establish a circle of support; another lists ways of keeping productive conversations going, ensuring that the person with dementia is always comfortable asking questions or seeking help.

For those living with dementia and who are still driving, worksheets help assess safety and skill level and even identify warning signs for drivers who aren’t yet willing to hand over their keys. For example, slowing down for a green light is one indicator that a driver isn’t easily processing the difference between green, yellow, or red lights.

Processes for taking away or suspending someone’s driver’s license vary by jurisdiction, but almost always involve consultations with healthcare professionals, sometimes after a family member or first responder raise safety concerns. Such conversations are difficult for everyone; family members are worried, the person about to lose their license might be angry, and physicians don’t enjoy doing it.

The Driving and Dementia Roadmap is an excellent tool to ease the emotional impact of making this tough decision for those who are still driving, for those who need support after their license is gone, and for family members who are trying to navigate the frightening and uncertain dementia journey with their loved one.

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