Dementia & Driving: How Do You Know When It’s Time to Hand Over the Keys?

When you have a family member living with dementia, one of the hardest things to consider is when it’s time to take away the keys to the car.  According to occupational therapist Jenny Nordine, this conversation about stopping driving can be a difficult one, because it can feel like a loss of independence and potentially a loss of socialization. An added challenge: knowing when it truly is time to stop driving. For that reason, many families have turned to getting driving assessments to get a true sense of driving ability. 

Nordine, founder of a driving and safety consultancy called Driving to Independence, has been a resource for families navigating this difficult decision for over 20 years. Focusing on Arizona and New Mexico, she and her team help clients with cognitive, visual, developmental, and physical diagnoses. This help includes recommending adaptive driving equipment, vehicles, and lifts to accommodate client needs. She’s also an expert in driving assessments that help determine whether people with cognitive issues can continue to drive safely. 

Nordine joins Being Patient EIC Deborah Kan to discuss dementia, driving, and knowing when it may be time to get a driving assessment. Read highlights from the discussion or watch the conversation below.

Being Patient: How do you decide when it’s time for someone with dementia to stop driving? With the way dementia presents, some days are good, and some days are bad, so how do you determine if someone should be behind the wheel?

Driving to Independence founder Jenny Nordine: [It’s] a really, really hard decision to make, but we go through a full comprehensive driver assessment. That takes place in two situations. In our practice, we do it at the same appointment. We do a clinical assessment and a behind-the-wheel assessment. That clinical assessment is going to focus on the areas of the individual’s dementia that could be affecting their driving. We’re looking at memory, speed of processing, time and judgment of space, prioritization of information, their ability to divide their attention, and things like that.

We do some basic driving, roadside identification, and things like that. Then we’re gonna go out into our vehicle, and we’re actually going to drive or direct the individual through a predetermined route, that they must then demonstrate specific skills in order to pass the exam or pass the assessment. Those are not crazy skills, but they’re very common skills that one must be able to do.

Being Patient: What are some examples of these driving skills?

Nordine: We’re going to look at right turns and left turns, lane changes to the right and left, the ability to maintain a speed or be able to be within the range and appropriate range of speed on the speed limit, and managing lots of pedestrians driving through a parking lot— those sorts of skills that one must be able to do. We’re going to come back because, as you said, this condition really can sort of ebb and flow, as well as progress over time. We’re going to often make a recommendation that somebody come in for a consistency drive, especially if everything has gone really well at the assessment, which is great. 

We want to make sure that those good skills are demonstrated consistently over time. Naturally, we tend to make appointments when we know we’re our best, and so if somebody is a morning person, they’ll automatically make that appointment for their assessment in the morning. We want to then schedule that consistency drive later in the day to ensure that those skills carry over throughout the day.

Being Patient: How do you talk about taking away the keys? After all, driving is representative of independence.

Nordine: Exactly. It’s interesting to me that the ability to move about in our communities is so much related to socialization and freedom and independence, and it really doesn’t matter if we’re 16 or 76. That’s why we want to be able to drive, and so much of our driving is related to our ego. My suggestion is always making sure that we begin to have that conversation early so that somebody is able to understand the safety aspects of driving and the genuine concern that their family member has related to their ability to drive. 

Beginning to have those conversations early, when symptoms or signs of dementia or aging are initially identified. Then, really begin to put into place — even when somebody is continuing to safely drive — some skills that they may need to maintain that level of independence, even if they’re not actually behind the wheel. A prime example is learning how to potentially use public transportation in their area, or using a shared ride app. This may not be something that our older adults use on a regular basis, but learning how to use that early on in a diagnosis is going to help maintain that level of independence later.

“…the ability to move about in our communities is so much related to socialization and freedom and independence, and it really doesn’t matter if we’re 16 or 76.”

Being Patient: What is the number one sign where a person should not be driving anymore?

Nordine: Probably memory. Memory is so prevalent within the diagnosis. In dementia, aging, and Alzheimer’s disease, memory will tend to be sort of the original area that we begin to identify, and memory is so involved in driving. There’s a lot of things. We could talk about a lot of specifics, as far as, you know, divided attention. If I’m hungry, suddenly, now I’m seeing every fast food restaurant on my route. Memory is important. In our immediate memory, “What is the speed limit, even though I just passed that speed limit sign?” or, driving along and passing a bicyclist in a bike lane, and then immediately making a right-hand turn because that’s your route. You need to turn right at the next traffic light, but forgetting that that person on a bicycle was just there, and we need to be able to yield to them. 

The other area of memory is more long-term memory, remembering routes or remembering a destination. We may be so tied into a single route from home to the grocery store, but if there’s a collision that’s closed an intersection or road construction that changes the route, is that person still able to remember to get back home? Or how to adjust their route? Memory is a really big one because it encompasses so much of what we do when driving,

Being Patient: When you have a cognitive assessment, one of the things given to us is the clock, right? That’s so hard because there are so many layers of information going on, and they’re not literal. Is it the same with driving, though? Is there a way to make that assessment about whether or not a person has the capacity to think of a few things, many things at one time, like that clock test?

Nordine: There are a few different aspects to driving. The first thing is sort of vehicle control or vehicle operation, which in this group tends to not be an issue at all.

The second area is knowledge or recall of rules of the road, which generally is not a problem with this group, although we do see some issues with that.

Then the third area is really defensive driving techniques. Those are the three areas of driving that we all have to be able to actively and safely participate in.

It’s those ‘defensive driving’ and ‘rules of the road’ [areas] that we initially and typically we’ll see be an issue with this group. So, remembering the rules of the road: What do I do at a green arrow versus a solid green light, for instance? Or am I able to turn right on this red light at this intersection? But it’s also the defensive driving technique, in being able to anticipate what another driver may be doing.

We all have habits and have to get along with others out there on the road. People with dementia will tend to have a bit of what we would call “tunnel vision.” That’s not necessarily a visual issue, but rather that they know they are going to turn left at this upcoming traffic light, so they just go through that maneuver and forget that they have to yield to oncoming traffic or check a lane. There’s a lot that goes on all at the same time, not just getting from A to B, for instance.

Being Patient: Is anxiety a factor in driving ability? When me and my sister were worried about my mom driving, early in her journey, she was able to pass the test at the DMV, but she was very anxious in the car. It wasn’t her ability to drive, but it was that heightened anxiety where we thought, if you’re so anxious, you’re probably opening the door to having an accident.

Nordine: When we look at a list of things that a family member might begin to question whether or not somebody’s able to safely drive, it’s that heightened anxiety. Sometimes people will say to their spouse or adult children, “I’m just exhausted after I drive these days, and I don’t understand why.” Well, it’s that anxiety that they’re experiencing, or “I had two people honk at me when I was out driving today, and I just don’t understand why.” Those are absolutely signs that we see. 

Being Patient: What’s the difference between this comprehensive driver assessment you’ve spoken about and the driving test you get at the DMV?

Nordine: The difference between a comprehensive driving assessment with a certified driver rehab specialist versus the motor vehicle department is that the motor vehicle department is very black and white. If you pass this test, that’s all we need to do, or if you can demonstrate that you can parallel park or go around the block, you’re good to go.

A specialized comprehensive assessment, which we would consider a functional assessment, is much more in depth and is going to be able to identify a lot of the areas that you’re addressing or that you and your mom needed to consider. [It’s] the fatigue level that somebody is experiencing, or the unknown, the being able to drive outside of one’s normal driving patterns.

One of the things that we’ll often do when we go out to somebody’s home, as I gave this example: Is somebody able to remember how to get home? We will ask them to drive to three, four, or five common destinations that they may want to go to. At some point during that route, we will say, “Hey, you have to turn right at this next traffic light. We’re going to pretend that there’s a collision ahead, and this road is blocked. Now, can you find the route either home, or to the next destination that we’re looking for?”

That’s the essence of why a comprehensive driving assessment from a specialist can be to somebody’s advantage, because now we’re identifying that these are issues or that they are still safe to be driving.

Being Patient: Have you noticed any patterns in people with dementia that indicate difficulty driving safely?

Nordine: In general, what we want to start to look for is external signs [they] have difficulty in driving. This level of anxiety, or even as a passenger, you know, if you get into the vehicle with your spouse who has a diagnosis, and they forget to put their seatbelt on, again, those are sort of early signs, or that we can identify different dings or dents on the vehicle itself. 

“The essence of why a comprehensive driving assessment
from a specialist can be to somebody’s advantage
is because we’re identifying whether these
are issues, or that they are still safe to be driving.”

Clearly being pulled over by law enforcement, we sometimes will get referrals through that avenue, or, you know, having difficulty backing out of the driveway or backing out of a parking space. Those are all signs that the privilege of driving probably is really coming to an end at this point because we’ve got these very physical external signs.

Being Patient: Dementia aside, is there an age where you think that people should just stop driving?

Nordine: That’s a great question. I’ve been doing this for 22 years, and I can tell you that I have seen plenty of people in their mid-60s who should not be driving because we all age so much differently. I’ve had other folks in their 80s that are doing just fine. Just like adolescents mature at different rates, we can see that in our children or grandchildren, we age at different rates as well. Some of that’s a function of lifestyle, some of that’s a function of health and heredity and those sorts of things. I have absolutely seen folks in their mid-60s, unrelated to a dementia diagnosis, that do not demonstrate the ability to drive, and older adults who are doing great.

“Just like adolescents mature at different rates, we can see that in our children or grandchildren, we age at different rates as well.”

Being Patient: Who are the bulk of the people getting assessments at your organization?

Nordine: If we look at our practice, overall, we’re really seeing everybody along that lifespan spectrum. We see kids with autism and on the spectrum. We see people that have had brain injuries, strokes or spinal cord injuries. Then, of course, we see the aging adults with dementia. The vast majority of the referrals that we get are either from family members or from physicians when we’re talking about this. We get phone calls from adult children that just say, “I’m not sure my dad should be driving, but I don’t want to have to make that decision.” And that’s fine. 

“I’ve been doing this for 22 years, and I can tell
you that I have seen plenty of people in their
mid-60s who should not be driving because
we all age so much differently. I’ve had other
folks in their 80s that are doing just fine.”

That’s really a role that we take on to make sure that number one: it’s an objective assessment, that we’re looking at a wide variety of things that that can affect somebody’s ability to drive, or helping them with sort of remediation or skills that they may incorporate, that will maintain a level of independence longer, as well as the fact that if this individual is not safe to be driving, that’s a conversation that I’m having with him versus his daughter because that’s a really difficult position to put an adult child in. That can really disrupt that family unit. Now, Dad’s mad at that person versus me. At the Thanksgiving dinner table, it’s okay to be mad at me because of this loss of independence, but I really want to make sure that that family unit is intact.

Being Patient: Amen to that. That’s been our family, and I get it. It’s hard. If your child is telling you, you can no longer drive anymore. It’s humiliating. It signals a loss of independence. You can’t do anything right anymore. It’s a really, really difficult position to be in that a lot of us are in.

Nordine: Exactly.

Being Patient: We’re getting a question from our audience about whether choosing city driving over expressway driving is a good idea for her husband with dementia. Also, this viewer is in Virginia. Are there any people in the area to do this type of driving assessment?

Nordine:  It has to do, again, with the skills that this person has maintained. In some ways, expressway driving is easier because people aren’t slowing and turning or, traffic isn’t coming in and traffic lights aren’t changing and things like that. If you’re in the flow of traffic, there aren’t quite as many decisions to be made. The problem is that when a decision has to be made, it happens quickly because of the speed of traffic. City driving, although, could be a bit slower; there’s just a lot going on and a lot of distraction.

So, I’m not necessarily sure that restricting somebody to only city driving is necessarily going to keep him safe. Now, with regard to other evaluators that do the exact same thing that I do, I would really encourage people to look at the member locator of the website. Our professional organization is called the Association for Driver Rehabilitation Specialists. They have a member locator, and you can search by location and things like that. There are absolutely folks in Virginia. Good ones.

Being Patient: How do these driving assessments work? Do you get referred by the DMV or by a doctor?

Nordine: That really differs by jurisdiction. In Virginia, as our example, it could be very different. Here in the state of Arizona, which is where our main office is, we require a prescription from a medical provider, and then our medical review program of our motor vehicle department has a form that needs to be submitted in order to either clear somebody to drive following a diagnosis or to discontinue their driving privileges as well. Our documentation goes both to the prescribing provider as well as the motor vehicle department. 

To the provider, we send that form, and then the doctor, nurse practitioner, or whomever completes that form and forwards it on to the motor vehicle [department], and then their process goes from there. That differs quite a lot between different jurisdictions, so we’d have to figure that out in the specifics.

Being Patient: Rideshare apps, which you mentioned earlier, can be challenging for older people to use if they’re not good with technology. What are some of the solutions out there for people who can no longer drive?

Nordine: Interestingly enough, the shared ride apps have evolved and have taken on this issue as well. It used to be that you had to be standing someplace where you wanted to be picked up when you requested a car and things like that. The apps have evolved in that I can request a vehicle or a ride for somebody at a different location at a specific time. You’re absolutely right that it does become a little bit more complicated if I’m needing to arrange that ride, but it is possible to do. Again, that’s why we want to make sure that folks are learning these apps when you know early on in this process. 

The other thing that I often will recommend to family members is setting aside a specific time for this individual to run errands or make appointments and things like that. As adults, we don’t want to have to ask for help. If I say to my family member, “You know what, at two o’clock every Wednesday, I’m available for anything that you need to get done.” They just know that that’s their dedicated time with me, and I’ll drive them on whatever errand or whatever appointment or out to lunch or whatever it might be. So they’re not having to ask me for help each and every time. Sometimes, that’s just sort of a nice way to be able to bridge that gap.

The other thing is, my father may not want me to come along to some social event that he wants to participate in, in his social group, so making sure that we’ve got folks that, you know, in the community in those social groups are also quite willing to give a ride or pick somebody up. My father would be happy to provide a ride to somebody as they need to as well. Tapping into some of those resources is helpful as well. 

“As adults, we don’t want to have to ask for help.”

Being Patient: A friend of mine calls it a “care friend,” which I love. Socialization is one of the best things you can do for those with dementia, so the opportunity to spend time with others is of great value. To summarize, you would suggest that you don’t challenge your parents yourself; find a third party, like your organization, to say, I will do an independent assessment because then it takes you out of the conversation. Is that right?

Nordine: Right. If you are going to have a conversation, even the conversation of bringing up an assessment can be hard as well. So, really focus on the fact that you’re concerned about their safety. Not that they’re a bad driver, but rather, “We want to make sure that you’re safe out there when driving as well.” 

It’s also important to have those conversations at home, not when they’re driving. That can be a really difficult position to put everybody in if that anxiety goes up.

Being Patient: Tell us a little about your organization. Does your organization keep people driving as well? Or is it basically an assessment?

Nordine: Our main offices are in the Phoenix metro area in Tempe, Arizona, and then we have one dedicated therapist down in Tucson, Arizona, and then we have a third location with a dedicated OT practitioner in Albuquerque, New Mexico.

My company is called Driving to Independence. Our goal is not to take away that independence at all but make sure that people are independent as long as they can be. The fact is, some folks have outlived their ability to drive. As we age, we all change some of the habits that we have or the tasks that we do, you know. We may throw rugs out of the bathroom to make sure we don’t slip as well. This is just one of those things. But absolutely, if there’s a way that we can adjust somebody’s driving skill or their techniques or reduce where they’re qualified to drive and things like that, that’s absolutely the ultimate goal is to keep somebody driving as long as possible. 

“Our goal is not to take away that independence at all but make sure that people are independent as long as they can be.”

Being Patient: How frequently would they need to go to see you?

Nordine: We do reassessments probably annually for a whole group of folks, but that really is a much better judgment to be made through the medical provider simply because they know how fast the dementia is progressing.

Sometimes we’ve got probably three or four folks in our practice that we reassess every six or nine months, and then there’s other people that were you know, reassessing annually or every other year, so it that that’s really, it comes from the provider more than us necessarily. We might come up with a general recommendation.