Driving and Parkinson’s disease

For some people with Parkinson’s disease (PD), there may come a time when it is no longer safe for them to drive. This is a very sensitive and fraught issue since for many people, driving is equated with independence, and people with PD may assume that relinquishing driving means a further narrowing and limiting of their world. However, with the right tools, a person can continue to be an active and engaged member of society without driving. Gabrielle Blenden, MSOT, OTR/L and Peggy Barco, OTD,OTR/L, CDRS, SCDCM, FAOTA are occupational therapists at Washington University School of Medicine Program in Occupational Therapy in St. Louis, Missouri, where they work at the Driving and Community Mobility (DCM) Laboratory. They study the role of neurologic disease on driving and perform comprehensive driving evaluations to determine if a person’s driving abilities are intact.

Together with the APDA Greater St. Louis Chapter, they designed a Driving Retirement Workshop – a four-session program for people with PD and their families to help plan for maintained independence in the face of driving cessation.

Recently, I was able to ask Ms. Blenden and Dr. Barco about their work.

What symptoms of PD may interfere with the ability to drive safely?

Driving is a complex task that requires vision, appropriate motor skills, and higher levels of cognitive function to carry out safely. The most obvious symptoms that can impact driving ability for people with PD are typically motor difficulties such as resting tremors, rigid movements and difficulty maintaining stable posture, which may make it difficult to operate a vehicle safely. What is less obvious, and often more concerning, is that certain non-motor difficulties that can accompany PD may also interfere with driving. These include decreased contrast sensitivity which limits a person’s ability to see things in the dark, decreased proprioception, which impairs a person’s ability to know where their body is in space (such as a foot on the gas pedal), decreased visual spatial skills, which may affect the ability to know how the car is positioned on the road, and difficulties with cognitive function which can impact memory, processing speed, attention, and problem solving. In our own day-to-day evaluations with drivers who have PD, we often find that it is the cognitive impairment that most impacts driving. Drowsiness that accompanies later stages of PD and medication side effects can also impact the ability to drive safely. Non-motor symptoms are less evident than motor symptoms and have been shown to be a more serious risk to driving safety in some people with PD.

How does a person know when they should reconsider driving?

A good indicator of when it may be time to consider driving retirement is when there are notable difficulties and/or changes in any of the symptoms we mentioned above. Since many times it is difficult for someone to notice a decline in function in themselves, it is usually a family member, close friend, or physician who will notice significant changes in function. It is the physician who will recommend driving retirement or make a referral to a specialist who can perform a comprehensive driving evaluation. Since driving requires a combination of visual skills, motor skills and cognitive skills, it is important to monitor how all of these areas change when someone is diagnosed with a neurodegenerative disease like PD. If someone notices a significant change in function that might affect the ability to drive safely, this should be talked about with a doctor.

Another very important indicator of whether a person should be driving, is how well the person is currently driving. For example, have there been recent accidents or traffic tickets, small scrapes on the car, potentially dangerous actions observed by passengers in the car, or getting lost while driving, etc? Again, in such cases a doctor may recommend driving retirement or a comprehensive driving evaluation.

What is a comprehensive driving evaluation?

A comprehensive driving evaluation is typically conducted by an occupational therapist and involves a variety of assessments both in a clinic and on the road that investigate the various skills (vision, motor skills, cognitive function) needed for driving. A comprehensive driving evaluation can be ordered by your neurologist if you would like to continue driving, or if you, your family or your physician has concerns about whether your driving is safe.

Is it OK to limit driving instead of stopping completely – that is, only drive locally or during the day?

What we find is that as we age, most people normally begin to restrict their driving. For example, older drivers often prefer to not drive at night, drive in familiar areas only, and limit highway and rush-hour driving. Drivers usually are more comfortable driving in familiar areas that are close to home and driving during the daytime. The more frequently we drive places, the more familiar we are with the streets, traffic patterns, and routes, making it easier for us to navigate.  But even when driving locally, the unexpected situation can still occur (e.g. a detour, a car making an unexpected lane change, a person walking behind a car that is backing up).  Therefore, restricting driving to a person’s local area is not always sufficient. It really depends on both the type and level of severity of impairment that the person with PD is experiencing. Restricting driving is most useful when the type and severity of impairment will support the driver’s ability to follow through safely with the restriction. Advice from a physician and/or occupational therapist who works with driving can be beneficial in guiding such a decision.

An additional concern arises when drivers who need to restrict their driving fail to do so.  Usually those who fail to restrict when necessary have cognitive impairments which limit their insight into the need for restrictions.

If a person does have to stop driving because of their PD, what alternative means of transportation are available?

We are finding that the most common way people get around after they stop driving is with the help of family and friends. However, this is not the only option. Public transportation is a viable option for many. However, using public transportation requires some of the same skills one needs for driving, such as planning the route, adhering to a schedule, and navigating. Therefore, while it can be quite useful, using public transportation may not be an option for some people with PD who have cognitive challenges.

Many municipalities offer programs that provide an alternative to driving for older adults or people with disabilities. These include buses or vans that pick you up and take you where you need to go at a discounted rate or a donation-based fee. Interestingly, in our work with older adults, many are not as inclined to use these services as much as one would expect. The services must be pre-scheduled and can sometimes be cumbersome to arrange (so perhaps one can utilize these services when not on a tight schedule and have some flexibility with arrival time). There is increased interest in ride-hailing applications such as Lyft and Uber. These services are easy to arrange without the need to plan far ahead of time. However, the technology can be viewed by some older adults as challenging, In addition, these services are typically more expensive than public ride programs offered by municipalities.

If a person does have to stop driving because of their PD, what strategies can help them maintain their independence?

The COVID-19 crisis is teaching all of us about using alternative strategies that do not require driving to maintain independence — for example, online ordering of groceries and medications, telehealth visits with our physicians, and new ways of connecting to our family and friends using technology. We undoubtedly will continue to use these resources even after the COVID-19 crisis ends and all these new strategies can help increase the independence of those who do not drive.

Can you tell us about the Driving Retirement Workshop that you created?

The APDA Greater St. Louis Chapter approached us to help create a workshop to better inform people with PD and their caregivers of how PD can impact driving. Within Washington University School of Medicine Program in Occupational Therapy we have a Driving and Community Mobility (DCM) Lab. Working with the APDA Greater St. Louis Chapter presented a wonderful learning opportunity for our graduate occupational therapy students in the DCM lab to trial an innovative community-based project.  The occupational therapy students were very enthusiastic and took an active role in assisting in the planning of this workshop.

This interactive workshop was focused on the person with PD and his/her caregiver with the goal of presenting unique learning experiences. There were a total of four sessions in the workshop. The workshop presented the current data related to PD and its effects on driving and discussed how we stay safe on the road.  It then taught how to implement some of the more novel solutions to driving alternatives such as online grocery delivery services and ride-hailing phone applications.

During the workshop, some participants decided to arrange and trial a ride-share to one of the workshop sessions.  We saw many participants who had previously not been comfortable trying new services, start to do so. Those individuals who tried novel options were able to bring back a “critique of the service” to the rest of the group which served to stimulate more thought, discussion, and ideas. It was a great learning experience for all and we hope to offer this program again in the future in collaboration with APDA.

Tips and Takeaways

• PD motor and non-motor symptoms can interfere with safe driving.
• Talk with your doctor if you have concerns about your own driving. Your care partner or other family members may have concerns about your driving which should also be brought to the attention of your doctor.
• Your doctor may recommend driving retirement or a comprehensive driving evaluation by a certified driving rehabilitation specialist. You can use the AOTA website to find a specialist near you.
• Once it is time for you to stop driving, there are many strategies that you can put in place to maintain your independence.