AFTD founding Board member Lisa Radin shared her journey of being an FTD caregiver during Massachusetts General Hospital’s “Community Forum Friday” conversation series.  

Radin was a guest on the March 24 livestream hosted by Katie Brandt, MM, Director of Caregiver Support Services and Public Relations at Mass General’s Frontotemporal Disorders Unit. The 50-minute discussion, entitled “What If It’s Not Alzheimer’s?,” details how Radin’s experience of caring for her late husband, Neil Radin, encouraged her and her son, Gary Radin, to compile and edit their book What if It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia.  

Neil Radin was diagnosed with FTD in 1995, which at the time was referred to as Pick’s Disease. He died in 1998 from complications related to the FTD disorder corticobasal degeneration.  

“Over 25 years ago, my world came to a screeching halt and my children and I were really in crisis. We had fear, uncertainty, and almost hopelessness when we first heard about the diagnosis my husband had,” Radin said during the conversation. “What we needed, though, was knowledge and that was very difficult 25 years ago. There wasn’t a lot of information available and very few resources.” 

What if It’s Not Alzheimer’s?, now in its third edition, is what Radin describes as an FTD reference book that she says is meant to make “someone else’s journey a little bit easier” compared to when her family journeyed through her husband’s diagnosis. The book was the first of its kind to be specifically dedicated to providing information and support to FTD caregivers.   

During the conversation, Radin also imparted advice to dementia caregivers and care partners about how to navigate their lives as they cope with their loved ones’ diagnoses.  

“Find your voice and embrace the new normal. A caregiver’s journey is just that — it’s a journey that doesn’t really end but always has a way to look forward,” she said.  

Watch the full “Forum Friday” conversation here.