Aug. 9, 2023 – Four years ago, Pamela Smith, a 76-year-old retiree in Orlando, FL, became concerned about her husband’s driving.
Dick Smith had recently been diagnosed with mild cognitive impairment and was in the early stages of Alzheimer’s disease, Pamela said.
“I noticed he was wandering in the lane, and when I mentioned this to him, he would make corrections. We had his eyes checked – we thought maybe it was impaired vision – but his eyes checked out fine.”
A couple of times, Dick almost hit a concrete median on the highway. Once, he couldn’t figure out how to get out of a small parking lot.
“The scariest was when he was pulling away from a red light, he would make a right turn into ongoing traffic, not allowing anywhere near enough room for the cars that were coming fast. I would just hold my breath, waiting for a possible crash.”
Just as Pamela prepared to talk with her husband about turning over the keys — a conversation that made her very anxious –Dick himself realized it was no longer safe for him to drive.
“The final straw was when I was coming off our highway and merging into traffic, and I couldn’t judge the speed of that traffic, to the point that my heart actually skipped a beat or two,” said Dick Smith, 80, a retired health care administrator.
“I was mature enough to realize that I’d rather make sure we’re all alive and safe and no one gets killed, so I knew I had to give up driving,” he said. “I’ve always loved driving, especially long distances, so it was very painful. It’s still painful.”
A Common Problem
It’s fortunate that Dick was self-aware enough to recognize that he could no longer drive safely. Unfortunately, many people are remaining behind the wheel, even with cognitive impairments, new research has found.
The investigators studied 635 people with an average age of 77. The group included Mexican American and non-Hispanic White people. All had shown signs of cognitive impairment (loss of thinking skills), based on a test called the Montreal Cognitive Assessment. Of the people in the study, 61.4% were current drivers and about one-third of their caregivers had concerns about the safety of their driving.
Start the Conversation Early
Monica Moreno, senior director of care and support at the Alzheimer’s Association, said it’s important to recognize that each person goes through Alzheimer’s in a different way.
“We would never say that everyone living with any type of cognitive impairment should automatically stop driving,” she said. “It’s a very individual experience and a decision that the family must make together with the person living with the disease, and it’s unique and special to each situation.”
Senior study author Lewis Morgenstern, MD, a professor of neurology, epidemiology, emergency medicine, and neurosurgery at the University of Michigan, agreed, noting that some people with early mild cognitive impairment “are likely safe to still drive, and driving maintains their independence and role in the community.”
But families should stay alert to concerns because “it’s inevitable that, as Alzheimer’s disease progresses – and it is a progressive disease – the person will eventually no longer be able to safely drive,” Moreno said. At that point, according to Moreno, “telling a loved one he or she can no longer drive is one of the most difficult decisions for families to make, because driving is really a component of a person’s independence,” she said. “It’s how they stay engaged socially so they can meet with others – friends, family members, and so on.”
When we think about “taking away their keys or asking them to give up their keys, we think of the impact on the individual while they’re also experiencing other losses, and that’s huge,” said Moreno, who also heads the Alzheimer’s Association’s National Early Stage Advisory Group – a group of people with early-stage Alzheimer’s who do advocacy and education about what it feels like to be going through the process of having Alzheimer’s.
Moreno encourages families to start talking about driving as soon as the person gets diagnosed. Hopefully, during those early conversations, the person will agree to accept the feedback that the driving has become unsafe when the time comes. Morgenstern and his co-authors noted that developing an advanced driving directive when the person is still able to do so can be helpful.
Similar to advance directives for end-of-life care, an advanced driving directive is an “agreement between a person and trusted individual to have conversations regarding driving cessation” and allow the driver to designate another person to make driving decisions for them in the future.
Approaching the Conversation
The Alzheimer’s Association website has a section devoted to dementia and driving, including videos that provide conversational scenarios to help guide people through the delicate process of broaching the subject.
There is also a 24/7 help line operated by health care professionals that people can call.
“You can talk to a care consultant who can help you develop a plan for starting the conversation,” Moreno advised. “And then, after you’ve had the conversation, you can debrief with the consultant on what did and didn’t go well, so you’re working with an expert who can guide you through the entire process.”
If the Person Is Reluctant to Give Up Driving
If the person with dementia doesn’t agree, or doesn’t realize they can no longer drive safely, and you or another caregiver is unable to convince them, perhaps other family members can step in to try to do so.
Morgenstern advises caregivers to talk to the person’s primary care doctor about safety issues in cognitive impairment, including driving and home safety.
Consider an on-the-road driving test or driving school, or even occupational therapy, he said. The Alzheimer’s Association provides information about how to get a family member evaluated. It may be more effective if the person hears the difficult news from an expert outside the family.
If a person has reached a stage in the disease where it’s dangerous for them to drive but is unwilling to accept that, families may have to control access to the car keys, Moreno said. Some families disable the car by removing the battery or not having the wires connected so that if the person does find the keys and attempts to drive, the car won’t start.
“We know that later on, as the disease progresses, even seeing the family car in the driveway may trigger the person who wants to drive,” Moreno said. “I’ve talked to families who have parked the car around the corner or even sold the car if they didn’t need it anymore so that it doesn’t trigger a memory for the person with dementia.”
She stressed the importance of early conversations about driving, while the person is still able to engage in them. “That way, if the person refuses to give up the car keys when the time comes, you know that you are carrying out their wishes, and it can help reduce some of the guilt.”
Making the Transition
Moreno pointed out that in the modern world, services like Uber and Lyft can allow people to continue being independent and being taken to activities and places they love to go so they’re not isolated.
Pamela Smith was “nervous at the beginning,” because Dick criticized her driving. “It made me very tense, and it was an unhappy situation,” she said. “We had to have several conversations about that.”
Now, he keeps his head down and looks at his phone or does crossword puzzles. “I don’t want to harm our marriage by being critical,” he explained.
He advises people to “be mature and sensible” and agree to step out from behind the wheel before something bad happens.
“I was scared we’d lose our life savings, insurance, car, or our lives or injure or kill someone else, and that didn’t make sense to me. Even in my impaired state, I think I made a good decision, and the kids were astounded that I did that all on my own.”