In 2012, Katie Brandt, a community resource specialist in the Neurology Department at the MGH, lost her husband to frontotemperal dementia (FTD). This gradually progressive fatal brain disease is very rare, and affects a person’s core self and relationships. There isn’t a cure for FTD, and it is treated with supportive care. Katie’s husband, Mike, was diagnosed at age 29, and died when he was 33. After he passed away, Katie began to brainstorm ideas of ways to help others.
“I started thinking about it,” says Katie. “How could I educate people in my community and the medical community about this disease?”
Mike was misdiagnosed eight times before Katie brought him to Boston. None of those clinicians ever considered FTD.
“One of the big challenges with FTD is that it’s rare and most people, including doctors, haven’t heard of it or seen a patient with it,” says Brad Dickerson, MD, director of the Frontotemporal Disorders Unit and Laboratory of Neuroimaging at the MGH, who was Mike’s physician. “Every effort that we can take advantage to raise awareness of what FTD is and to give doctors a clear story from a patient and family of what it looks like and what people are like when they have it, might decrease the delay in diagnosis.”
After Mike died, Katie’s advocacy mission took off with presentations at the State House and Capitol Hill, MGH Grand Rounds, Neurology Rounds at Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center, college classes for nurses and social workers and health schools at Brandeis, Boston University (BU) and Saint Anselm College in New Hampshire.
In 2015, Katie decided to further her efforts. With the help of four students from BU’s School of Communications, she produced a five-minute video sharing her and Mike’s story and submitted it to the American Academy of Neurology’s (AAN) Neuro Film Festival. Out of 66 entries, Katie’s film, “Love Is Out There,” received a runner-up prize, which includes a permanent position on the AAN YouTube Channel.
"One of the big challenges with FTD is that it's rare and most people, including doctors, haven't heard of it or seen a patient with it. Every effort that we can take advantage to raise awareness of what FTD is and to give doctors a clear story from a patient and family of what it looks like and what people are like when they have it, might decrease the delay in diagnosis." -Brad Dickerson, MD
“I was hoping if another caregiver like me watched our video, maybe they would think they could volunteer to run a support group or help in their community,” says Katie. “Even though it’s an incurable disease today, there are things that anybody can do to help. I wanted to inspire people to act.”
Currently, Katie uses her own experiences as a caregiver to support families of MGH patients who are going through the same thing she did.
“My personal experience as a caregiver for my husband with FTD helps me make strong connections with the families that I work with at the MGH,” Katie says. “I think that sharing my story with the families we care for allows them a safe space to share emotions, voice fears and ask questions knowing that I understand what it is like to be where they are.”
Read more articles from the 07/29/16 Hotline issue.