An article published in the Wall Street Journal shares the difficult journey former gynecologist Dr. Seth L. Stern faced in seeking a diagnosis for FTD, highlighting the many obstacles to diagnosis that people with FTD often face.

Dr. Stern first began noticing signs that something was wrong in 2017; he experienced difficulties finding the right words for things, had trouble focusing during routine procedures at work, and was beginning to experience other lapses, like going to a funeral on the wrong day. Suspecting that something was wrong, Dr. Stern proactively kept a running log of these changes in an app on his phone.

“You can say, ‘That can happen to anyone,’ but being a surgeon, I was always very specific in my actions, thoughts, and details,” Dr. Stern said.

Dr. Stern turned to a neurologist at his hospital, who sent him to undergo an MRI, PET scans, and a cognitive test. While the scans showed some minor changes, the doctors didn’t think much of it, especially as Dr. Stern also received excellent scores on his cognitive exam.

But Dr. Stern’s difficulties continued to worsen; by 2021 he began experiencing brain fog and apathy as well as more significant lapses, like leaving the stove on. At a follow-up appointment with the neurologist, Dr. Stern’s MRI and blood test results came back normal, though he would take up the doctor’s offer of an optional PET scan, which showed results consistent with FTD. Dr. Stern finally had an answer after five years of uncertainty. “If I had not pushed for the PET scan, I wouldn’t know today that I had FTD,” he said.

Dr. Stern’s difficulties and lengthy search for answers are all too common for families affected by FTD. On average, it takes three and a half years to get diagnosed.

According to the article, doctors cite various reasons for the difficulty in diagnosing dementia, including shortages of certain specialists, such as cognitive neurologists and geriatric psychiatrists, and limited access to necessary tests.  Misdiagnosis is common due to FTD’s behavioral symptoms, which can overlap with more common psychiatric disorders. Dementia often isn’t suspected until more advanced symptoms begin to present themselves.

Dr. Seth Stern is a member of AFTD’s Persons with FTD Advisory Council, which works to ensure that the insights and voices of people living with FTD are considered in the development of AFTD’s policies, programs and services.

Are you searching for an FTD specialist to aid in diagnosis? The Research and Medical Centers page on AFTD’s website can help you connect with FTD specialists around the US.

If you have any questions or concerns about getting an FTD diagnosis, you can always contact AFTD’s HelpLine for answers. 1-866-507-7222 or info@theaftd.org