In a blog article published by the Older Persons Advocacy Network of Australia, dementia advocate Gwenda Darling shares her perspective on losing her driver’s license due to her FTD diagnosis.

Driving is a cognitively demanding task that is directly impacted by the symptoms of FTD. While it is possible for some persons diagnosed to drive early in the progression of the disease, the progressive difficulties created by symptoms will eventually make it too difficult.

“A few weeks earlier, I had been sitting at a set of traffic lights – I saw the light go green and I drove off,” Darling wrote. “But it was a green arrow not a green light. I hadn’t processed the difference. A couple of days later, I merged onto the freeway. I thought: ‘why is that person honking at me?’ Then I realized I was still in second gear.”

Darling’s doctor told her that she would need to notify the road authority. In doing so, Darling faced an occupational therapy test that she knew she would not pass.

“I made the decision that I was going in with my head held high,” Darling wrote. “Yes, I gave up my [license], but I did it my way.”

But as Darling highlights, giving up driving is easier said than done – there is a profound sense of loss and grief that comes with it. In giving up driving, one loses a significant degree of independence.

Even when transportation-related support services are available for persons diagnosed with FTD and other dementias, they are often limited in scope. Darling’s local health department operates community transport cars for people with conditions and disabilities, but she notes that there are only three cars: one makes trips for chemotherapy, one for dialysis, and the other takes people to the local doctor. To go see specialists, Darling must rely on support workers through her home care package, paying a flat rate based on the distance she needs to travel.

“When you are forced to give up your [license], you need to find a team of people who can support you at the times you need to go,” Darling said. “I’ve been in situations where I literally haven’t known what to do. Once, my dog got bitten by a snake. I had to stand on the highway, trying to flag someone down.”

Despite the challenges that she may face, Darling highlights that there are still options out there for persons diagnosed. The local community Facebook page, as Darling notes, can be a useful resource where people can ask for assistance from friends and neighbors. Darling says that she keeps in contact with a local cab driver that she calls the night before she needs assistance to see if he has availability.

While giving up one’s license is a painful experience, after the grief comes acceptance, Darling says.

“List all the things you have lost, grieve them one by one,” Darling writes. “Write them out, burn them, bury them under the tree, and then nurture that tree. Because this is a new part of your life and you need to move on with living.”

Gwenda Darling previously joined fellow advocate Kevyn Morris for an interview where the duo discussed that, while early diagnosis is important, dementia shouldn’t be used to define who people are.

Driving and FTD is a complex topic to navigate – as FTD affects everyone differently, it is hard to know if symptoms will create driving challenges. In a recent Help & Hope issue, the Persons with FTD Advisory Council recently shared their insights on the topic as well as resources to help persons diagnosed navigate transportation issues.