I once discussed driving and dementia with my dear friend Richard, a well-educated, thoughtful man.

It is a fact that driving while impaired is a bad idea. Richard’s point was this: By definition, dementia is an impairment in our abilities. We should never knowingly put others in danger because of our abilities.

Dementia of any kind manifests itself differently in all people diagnosed. In FTD, we are often not aware of the degree to which we are impaired, or that we are impaired at all. If we accept these concepts, one would conclude that people with FTD should not drive.

So I do not drive. It is beyond hard. While my whole life has changed since I’ve been sick, the most impactful change has been the inability to drive. I have lost a career, ongoing professional training, regular daily conversations with peers, and positive outlets that facilitate growth and happiness.

Twelve years later, I’m still working on it. But, unfortunately, it looks like my driving days are gone for good. Can I get a ride?

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When I think back to when I was 16 and had just passed my driving test, I remember the feelings of joy and independence – feelings that increased 10 times over with the purchase of my first car, feelings that kept growing through the years. I was on my own schedule. I could pick up and take off on a whim. A huge convenience indeed!

That convenience became just a part of my life. No begging for a ride, just pick up and go. That’s all there was to it.

I WAS FREE!

Decades passed and driving was taken for granted, by me and by anyone looking for a ride. Now, fast forward…

NOT SO FREE!

I started getting lost and confused but was able to shrug it off as “not paying attention.” I was still able to cope, for a while, by being more vigilant and driving very cautiously. But as the third generation to have FTD in my family, I knew what was coming.
Thankfully, my family was able to convince me to stop driving. Issues that I saw as minor were not minor to them, and I began to realize they were not trying to take away my freedom – they were trying to protect me, because they love me.

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Here is a story of someone who is still able to drive:

I was 48 years old, living with FTD, when a neurologist finally reported me to the DMV. Previously, my husband, my kids, and some so-called friends all said I shouldn’t drive anymore just because I was diagnosed. I suggested that we let the DMV decide. I also contacted an attorney friend who helped me work with the DMV. I passed the written test and driving test. So I started driving again.

In the beginning I was nervous because any accident or traffic ticket would mean I would have to stop driving again. Currently I’m more relaxed and my husband rides with me every so often to make sure I’m still good. So just because you are diagnosed doesn’t mean you need to stop driving immediately.

So you can see that getting FTD does not automatically mean we cannot drive. It is all up to our abilities at a point in time.

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This article prompted the following responses from our community:

To whom it might concern: No one diagnosed with FTD should be driving, based on my experience of almost 20 years living with my husband’s bvFTD symptoms. If the patient is involved in an accident of ANY KIND, you can be sued and lose everything. He raced through a school zone one afternoon just as children were letting out of class. There was a police officer right there at the time. I was dumbfounded. This was before a discussion with his doctor. I told him that day he would never drive again. I was terrified. We could have lost our home, all of our insurance, not to mention the guilt of hurting a child.

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For all of you with FTD, here is a toolkit with information about dealing with a loss of your driving privileges.

Local Transportation Options

Gogo Grandparent 

• Website
• Website en español
• 1-855-464-6872

Silver Ride – A transportation service for people aged 65 and up

• Website
• 1 (800) 618-1246

Care.com – Transportation and in-home care

• Website
• There is no telephone number, and you must first open an account.

Check your Area Agency on Aging for services in your area.

Air and Train Travel Assistance
We have found these travel assistance resources to be very helpful if traveling via plane or train.

By Air

• TSA Cares is very helpful in providing assistance before and during the security screening process.
  • Website
  • 855-787-2227
  • The TSA also offers information on traveling with dementia.

By Train

• Amtrak offers accessible travel services to help people with dementia use their services.
  • ​​​​​​Website
  • 800-USA-RAIL (800-872-7245)

As always you can also visit the AFTD website for information, or get support from the AFTD HelpLine by calling 866-507-7222 or by sending an email to info@theaftd.org