When a doctor first says the words frontotemporal degeneration (FTD), everything changes. Some describe it as feeling like the ground drops out from under them — fear, grief, and endless questions fill the space where answers should be.

AFTD first published The Doctor Thinks It’s FTD: Now What? in 2013 to support families newly receiving the diagnosis—drawing on the experiences of thousands of affected families, as well as insights from leading health professionals and researchers focused on FTD.  It offered the first step forward with clear information about FTD, what to expect, and how to begin navigating care. For many, it became a lifeline during the most overwhelming days after diagnosis.

But the world of FTD has not stood still. In the years since, research has accelerated. There are more opportunities to participate in clinical trials and observational studies, giving families the chance to contribute to progress. Genetic understanding has grown, offering new clarity for some families. Support options have expanded, offering more virtual options and stronger resources. And importantly, the voices of those living with FTD and their care partners remain at the center of AFTD’s mission.

That’s why today, we’re proud to share the updated version of this resource:
Life After an FTD Diagnosis.

• Updated information on genetics, clinical trials, and research participation.
• Guidance for navigating legal, financial, and care planning early, to reduce future crises.
• Expanded resources for caregivers, including emotional support and community connections.
• A focus on living after diagnosis — finding purpose, routines, and meaning in daily life.

Read or Download: Life After an FTD Diagnosis