When police knocked on Katie Brandt’s door in November 2008, she feared the worst. They told her that her husband Mike, then 29, had been clocked driving 90 miles an hour. By the time he finally pulled into their driveway, nearly hitting the deck, it was clear something had fundamentally shifted.

Things had been shifting for a while. During Katie’s pregnancy, Mike stopped sharing her excitement. Stranger moments followed: earbuds he refused to remove during her labor, an obsession with sweets, and chaotic work produced for longtime clients of his web design business. “It was like he was drifting far away, and I couldn’t reach him,” Brandt recalled in a recent article in the online journal Aeon.

For two years, doctors dismissed Brandt’s concerns as depression or marital stress. Finally, after she insisted on a brain scan, a neurologist delivered the devastating news: Her husband had FTD at age 31.

The diagnosis was part of a personal avalanche for her. Around the same time, Brandt’s mother died suddenly, and her father was diagnosed with Alzheimer’s. Amidst the 2008 financial crisis, she lost her home to foreclosure and navigated a bureaucratic maze to secure food assistance.

Building From the Bottom

Mike Brandt died at 33. By 2012, she began volunteering for AFTD, most recently delivering the keynote address at the AFTD 2025 Annual Education Conference. She became the director of Caregiver Support Services at the FTD Unit at Massachusetts General Hospital (MGH).

“At first, the work was about finding my voice after years of isolation,” she said. Now, she lectures to audiences of 1,000, trains clinicians, and sits on advisory panels. She uses her husband’s story to shine a light on caregivers. In 2020, her advocacy helped reauthorize the Older Americans Act. New provisions, for which she was a tireless advocate, now allow patients under 60 with dementia to access support programs previously restricted by age.

A Way Forward

With an MGH colleague, Brandt now runs the largest caregiver support group of its kind in the country. Members share the surreal realities of FTD: a wife who can no longer name objects, or a spouse who steps over a fallen partner to refill coffee. The group offers context, solidarity, and a path through the isolation.

Brandt doesn’t sugarcoat the economic devastation or the toll on caregiver health. She focuses on policy supports—affordable respite, homecare, and adult day programs for younger persons diagnosed. “Being an advocate is so important to me because, when I work with families, I see the same problems over and over: the economic impacts on working-age families, the loss of social networks, the negative impacts on the health of caregivers,” she said.

“Think of all the policy gaps,” she adds. “I know we have to wait for science, but public policy and money could fix the problems that caregivers are afflicted by now.”