The Pulse: Taking The Keys From A Loved One With Alzheimer's

Dec 15, 2016

For older people, driving can mean the difference between freedom and dependence. But what happens if Alzheimer’s or another form of dementia begins to take hold? When do family members know it’s time to take away the keys? This week on The Pulse, we explore the options for families having this tough conversation. 

“It’s very sad to see such a brilliant man having trouble with the simple things," says Saunderstown resident Barbara Bourn, whose husband Tom has Alzheimer’s Disease. She tells her story in her cozy living room, with a friendly German Shepherd mix named Rocky at her feet, remembering the "...things he used to enjoy. It’s sad. Some refer to it as 'the long goodbye.'”

Before her husband’s  diagnosis, when he was still driving, she noticed some changes in his behavior.

“He’s a gentle soul, he’s very easy going, very kind, but toward the end he got to the point he couldn’t remember how to get to certain roads.”                                                                 

Bourn remembers the exact moment she knew he wasn’t safe to drive anymore.

“He thought the car behind him was too close so he slammed on his brakes. And I said, ‘That’s it. You’re done. No more.’”

For Bourn, that was the extent of the conversation. Her husband Tom agreed.

When decisions aren't as clear
For other families, the decision to stop someone from driving isn’t as clear. Rhode Island Hospital Alzheimer’s specialist Dr. Brian Ott treats Tom Bourn. He says that in the early stages of dementia, when a patient might notice some memory problems, they might still be absolutely fine to drive.

“Surprisingly, memory isn’t a particularly important aspect of driving. There are people who have mild dementia who drive perfectly well and don’t get into any accidents or have problems so long as they have some guide to help them where they need to go.”

Ott says it’s the other cognitive functions that play a more important role, like attention or planning. And for people with mild dementia, Ott’s running a study to determine just how their driving might be impaired, and whether they can learn to do better. It starts with a camera placed in the car.

“We’re using a device called Drive Cam which is a commercial device that video records unsafe driving incidences. They’re triggered by G forces.”

Half the study participants get to review their driving videos, and Ott says some of them have been able to improve their skills, just by watching what went wrong. But some people with early dementia are at higher risk for getting into crashes. And it can be hard to tell how many older people fall into that category.

“There is evidence that the prevalence and incidence of dementia is on the decline over the past few decades, but countering that the baby boom generation is going to be living to late years. And we’re all going to want to keep driving. So there is going to be an increasing pool of very active elderly people. So I don’t think this issue is going to go away.”

Ott says it’s not necessary to screen every older person for Alzheimer’s, but more people will develop the disease as baby boomers age. And if you’re worried about your memory, you should see a doctor. That doctor can refer patients here, to Lifespan’s Occupational Therapy clinic.

Testing a driver's abilities 

(Sound effect: video of a driving simulation)

This is a driving simulation lab. I’m sitting at a steering wheel, in what looks like the front seat of a car, watching a video of my imaginary car on the road. Another car pulls out suddenly in front of me. The video stops and some questions appear on the screen asking me what action I’d take. Break hard, veer right? Break hard veer left? Occupational therapist Janet Rivard Michaud evaluates drivers’ performances on these tests.

“So we look at everything from attentional skills. Can they direct their attention? Can they divide their attention between two pieces of information? For instance, can they look out the front of the window and still see the kid coming across from the side of the road?”

Michaud says most test takers don’t want to be here. No one wants to lose the independence driving affords. But sometimes, drivers aren’t aware they’re having problems.

“In Alzheimer’s, sometimes folks don’t really recognize their deficits and that’s a really difficult scenario for the person, the family and the doctor. Here what we can do is we can show them concretely, here’s what you did on this. It took you two and half minutes to do that trails A test of connecting the dots. Don’t you think that’s a little slow?”

Sometimes the test results are mixed, says Michaud. In that case, there might be some things families can do to help a driver be a little safer on the road, like adding extra mirrors, or a GPS device. If someone scores poorly, Michaud can report that information to the DMV. But she, personally, can’t take away someone’s license.

“So the decision-making process whether someone can drive or not happens between the person and their doctor, the person and the DMV, or the person and the police.”

(A note from Lifespan: "...in accordance with HIPAA, RIH Rehab will only contact the DMV if they were the source of referral for the test, OR with the client’s request and written authorization. In all other circumstances, a copy of the evaluation goes only to the referring MD, and to the patient/client him or herself if requested in writing.") 

“Every community in Rhode Island every police force in Rhode Island has a senior issues liaison," says attorney Tom Enright.

Who gets to decide?

Enright is with the Providence firm Partridge, Snow, and Hahn. He’s on the board of directors of the Rhode Island chapter of the Alzheimer’s Association and helped draft the state plan on Alzheimer’s. He says families can approach this police liaison for help with a driver they’re concerned about. Or:

"You can go to the doctor and the doctor under the law has the option of reporting safe driving issues direct to the DMV without negative consequence. They’re free to do that," says Enright. "Family members are allowed to reach out direct to the DMV and let them know there’s an issue.”

The agency might choose to hold a hearing about that driver’s ability. Enright says the state Alzheimer’s planning committee is reviewing the DMV’s procedures for Alzheimer’s and driving now. They're trying to determine whether any new regulations might be needed, even though the DMV does have internal procedures in place.

Mainly, Enright says he wants families to know their options. Because the conversations between a loved one who wants to keep driving and family members who want to keep them off the roads aren’t always as smooth as Barbara Bourn’s experience with her husband. 

In the driver's seat 

“He still has his tendencies to want to drive," says Barbara Bourn. "But for the most part, he realizes it’s time. It’s time.”

Bourn says it’s an adjustment, moving from the passenger seat, where she usually rode. “I loved being chauffeured around, yes.”

But she accepts her husband’s disease is progressing, and she’s in the driver’s seat now.