Emma Heming Willis
Understanding FTD

Understanding FTD

Frontotemporal Dementia (FTD) is a neurodegenerative disease caused by the degeneration of the frontal and/or temporal lobes of the brain. Despite being the most common form of dementia in people under 60, FTD remains widely unknown and often overlooked. Unlike Alzheimer’s, it does not primarily affect memory. Instead, it impacts one of three key areas: executive function and social behavior, language and communication, or muscle and motor control.

This complex disease presents both emotional and physical challenges that worsen over time. A lack of awareness among doctors and public health officials leads to frequent misdiagnosis, with many patients waiting 3 to 5 years for an accurate diagnosis. This delay suggests FTD may be far more prevalent than current data reflects. Currently, there are no approved treatments for FTD, a reality we hope will change in the years ahead.

If you or a loved one are experiencing symptoms, AFTD offers resources to help preserve and improve quality of life. To learn more about FTD symptoms, diagnosis, and research, visit theAFTD.org.

Every Journey Begins
With the First Step

For Those Who Feel Lost

For my FTD community: If you weren’t given a resource at your doctor’s office to help you find your footing, let AFTD be your first stop. Their website offers clear, helpful information about FTD, its symptoms, and the support available to you.

Learn More

For Those Who Feel Alone

Community has been my lifeline. With the right support, I can breathe easier and just be myself. No one should face this journey alone—support isn’t optional, it’s essential. You can find connection through organizations like AFTD or the Alzheimer’s Association, your care team, local programs, places of worship, or online groups. Let friends and family know you’re looking to connect—they may know someone walking a similar path.

Find a Support Group

For Those Who Feel Depleted

Join me in my journey as I learn how to make more time. Like all care partners and mothers, I struggle with being pulled in different directions. When I make more time for myself, and my brain health, my whole body benefits.

Join the Make Time Movement

Avenues for Advocacy

FTD awareness among doctors, health officials, and the public at large is crucial to our cause. Awareness inspires action and creates change. Join our community in leading conversations, reframing negative stigmas, and raising awareness for FTD and dementia as we advocate for our loved ones and ourselves.

Get Started