AFTD CEO Susan L-J Dickinson, MSGC, recently joined hosts Heather Mulder and Janice Greenough on the Dementia Untangled podcast to discuss FTD, sharing insights about diagnosis challenges, the impact on families, and the vital role of community support.

During the wide-ranging conversation, Ms. Dickinson explained how FTD differs fundamentally from Alzheimer’s disease in three key ways. First, it affects different parts of the brain—the frontal and temporal lobes rather than memory centers—leading to distinct symptoms like personality changes, loss of social awareness, and language difficulties. Second, FTD strikes younger, making it the most common form of dementia in people under 60. Third, its rarity means most clinicians have never encountered it, creating significant diagnostic obstacles.

“On average, it takes somebody over three and a half years to get this accurate diagnosis,” Ms. Dickinson told the hosts. Along the way, patients typically accumulate misdiagnoses—depression, bipolar disorder, Parkinson’s, or Alzheimer’s—depending on their presenting symptoms.

Ms. Dickinson shared her personal journey to AFTD, describing how she met AFTD’s founders 24 years ago when they established the organization through the University of Pennsylvania. With her background as a genetic counselor and medical writer, she recognized immediately the challenges these families faced.

The conversation explored FTD’s genetic component, with Ms. Dickinson noting that 20-25% of cases involve genetic variants. She emphasized the value of genetic counseling for families seeing patterns of neurological diagnoses across generations, pointing listeners to AFTD’s website resources.

“Be Persistent in Seeking Diagnosis”

For families navigating behavioral changes, Ms. Dickinson acknowledged the difficulty. “A lot of our people get sent to marriage counselors or are told they’re having a midlife crisis,” she explained. She encouraged persistence in seeking accurate diagnoses, highlighting AFTD’s downloadable diagnostic checklists as practical tools for partnering with physicians.

The discussion illuminated FTD’s devastating financial impact, which research shows is twice that of Alzheimer’s, primarily because it strikes when both parents may still be working.

Ms. Dickinson stressed hope and community as central to AFTD’s mission. The organization operates nearly 100 support groups nationwide plus virtual options, creating spaces where families can connect with others who truly understand their experiences. “The people living with this disease every day are the true experts,” she said, noting how families share strategies and learn from each other’s journeys.

While no treatments are yet approved for FTD—and some Alzheimer’s medications can actually worsen FTD symptoms—Ms. Dickinson expressed optimism about six to seven clinical trials currently underway. She encouraged listeners to join the FTD Disorders Registry to stay informed about research opportunities.

“Trust your gut,” Ms. Dickinson advised. “If your loved one is behaving in a way that is just not themselves, keep going and keep speaking up until you find somebody who will listen and work with you.”

The full Dementia Untangled episode is available on Apple Podcasts, Spotify, and other platforms.

Further reading:

https://www.theaftd.org/what-is-ftd/genetics-overview/

https://www.theaftd.org/research-clinical-trials/ftd-disorders-registry/

https://www.theaftd.org/what-is-ftd/ftd-diagnostic-checklist/