Help & Support: Facing a Difficult Decision: Driving and FTD

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Following an FTD diagnosis, determining whether the person diagnosed can and should still drive becomes increasingly urgent. Early on with driving and FTD, persons diagnosed may still be able to drive, but at some point, driving will become impossible. Because no two cases of FTD are alike, there is no exact timetable dictating when driving should stop.

Driving is a complex skill requiring higher cognitive functioning; unimpaired vision, motor control, and coordination; and an ability to maintain attention. FTD can degrade each of those systems. And research shows that FTD has a negative impact on one’s ability to drive. In a 2007 study by the National Institute of Neurological Disorders and Stroke (NINDS), persons with FTD who were tested in a driving simulator ran more stop signs, were involved in more accidents, and had a significantly higher average speed than a control group.

Additionally, symptoms of FTD that may be less immediately apparent, such as impaired judgment and disinhibition, correlate with poorer driving ability. Families may struggle with the idea that their loved ones with FTD appear to retain the physical ability to drive, yet still encounter difficult situations on the road. Often, this is due to those less apparent symptoms.

Because persons with FTD may insist that they are still able to drive – indeed, they may not even be aware that they have FTD – care partners often face the difficult decision of when to take away their keys. Convincing them to voluntarily stop driving will likely not work. Many families find it helpful to turn to their loved one’s physician for their recommendation. Taking an independent driving evaluation, whether through a DMV or driver-rehabilitation program, can demonstrate that driving with FTD has become too challenging. Make sure that the evaluator is aware that they will be driving with someone who has FTD beforehand (sharing the Fast Facts sheet from AFTD’s website may help).

The loss of driving privileges can mean a significant loss of autonomy and freedom for the person with FTD. Even if their license has been revoked, persons with FTD may still push back against or ignore directives to stop driving. In such cases, FTD care partners should work to understand the source of their loved one’s frustration, but also realize that the person diagnosed may not be able to respond rationally. Avoid arguing, and focus on being proactive and anticipating behaviors to the extent possible.

Understanding what triggers a certain behavior can sometimes help to stop it. For example, if a person with FTD drove to a café for a cup of coffee each morning before their diagnosis, their care partner could take over that routine, with the person diagnosed in the passenger seat.

If an FTD care partner cannot identify any behavioral triggers, they can try altering the environment of the person diagnosed: hide or lock up their car keys, park in a different location, or even sell their car. Laws about driving with dementia – including whether a family member can be held legally liable if a person diagnosed gets into an accident – vary by state. It is important to familiarize yourself with your state’s laws on this issue, and to take the appropriate steps in response.

Decisions made around driving and FTD can be stressful for all involved. FTD caregiver support groups can provide emotional support and be a source of information from others who have experienced something similar. Whether your group meets virtually or in person, peer support is one way to know that you are not alone in this journey.

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