AFTD volunteer Katie Brandt and AFTD Medical Advisory Council chair Brad Dickerson, MD, were featured in a recent edition of Being Patient Live Talk. Brandt and Dr. Dickerson spoke with Being Patient’s founder Deborah Kan, providing insights into FTD and answering audience questions.

Dr. Dickerson provided viewers with an overview of FTD from a medical perspective, explaining the different features of the disease and how it affects diagnosed people. In addition to describing common symptoms of FTD, he shared how FTD differs from Alzheimer’s disease. Dr. Dickerson offered insight into how FTD is diagnosed, noting the difficulties families and medical practitioners often face in getting a diagnosis.

“Many neurologists might have seen one or maybe two patients with FTD or progressive aphasia in their entire careers,” Dr. Dickerson said. “It’s a rare disease. So when you are not gaining access to someone that’s a specialist, it can be difficult to figure out if that’s the right diagnosis or not. Many patients and families will advocate for themselves to try to gain access to a specialist. But as we know, there aren’t enough of us.”

As a former care partner for her husband, Mike, Brandt offered insights from her lived experience with FTD. She discussed how Mike was diagnosed with FTD at the young age of 29 and how the symptoms first appeared.

“So, when you build your life, expecting that you’re in a partnership, you have two incomes, and then all of a sudden, one person in the partnership doesn’t seem the same,” said Brandt. “Mike became kind of apathetic about work. His work product was not of the high quality that his customers were used to. He wasn’t able to do all the tasks; I suddenly didn’t feel comfortable leaving him alone with our son. So, I didn’t have a co-parent, and I didn’t have a co-income earner.”

Brandt also answered questions from viewers about various aspects of the FTD journey. She touched on events from her own experience, such as explaining Mike’s diagnosis to their son, visiting eight doctors to get a diagnosis, and deciding to donate Mike’s brain. Brandt also spoke about ways care partners and other family members can advocate for loved ones with FTD.

“We don’t have a cure today for these conditions, but we do have a cure for the isolation and loneliness that may come along with a diagnosis,” said Brandt. “So right away, I tell people you need to speak with an elder law attorney. And then the second is to get connected with your disease community. If you have FTD, connect with the Association for Frontotemporal Degeneration, and find a support group.”

Katie Brandt is a volunteer and long-time collaborator with AFTD. She was named co-chair of the National Alzheimer’s Project Act (NAPA) Advisory Council in 2019 and appeared in a PSA produced by AFTD and Discovery Communications.

Dr. Brad Dickerson is the current chair of AFTD’s Medical Advisory Council and Director of the Massachusetts General Hospital Frontotemporal Disorders Unit and Neuroimaging Lab. In the past, Dr. Dickerson has shared his insights into FTD in an Magazyn MD panelu wideo and, more recently, with the Poczta Waszyngtońska.