A Diagnosis Should Come with a Plan
When Bruce was diagnosed with frontotemporal dementia, we left without the guidance we needed to understand what came next. There was a diagnosis, but no roadmap.
I know how overwhelming that moment can be. You’re trying to absorb life-changing news while wondering who to call, what to ask, and where to begin.
The absence of a treatment should never mean the absence of a plan. To me, this is what compassionate care looks like.
A Place to Begin
The Roadmap is a free, two-page resource for people living with FTD and their care partners. It brings together six places to start:
- Learn about FTD
- Build your care team
- Plan ahead
- Stay active
- Find support
- Explore research
The second page brings local contacts and national resources together in one place. You don’t have to fill it all out at once, or on your own. Ask your doctor or care team to help you get started, or call AFTD’s HelpLine at 866-507-7222 for guidance. My hope is that this gives you a place to begin, one step at a time.
Bring the Roadmap to Your Community
My hope is that every family receiving an FTD diagnosis leaves with practical guidance and a connection to support.
Medical centers can use the Roadmap as provided or adapt its design to reflect their institution, adding local services, care team contacts, and community resources.
To keep the Roadmap consistent, participating centers must preserve its core framework, front-page language, six topics, and my full quote. The Template Users Guide explains how to customize the design, update QR codes, and add local information while maintaining connections to AFTD’s national resources.
Once your center’s version is ready, submit it to info@theaftd.org for inclusion in AFTD’s national Roadmap library. The guide also offers suggestions for sharing it during appointments and incorporating it into after-visit materials.
Help Take This Work Further
Creating the Roadmap is a beginning. I want to help make sure it reaches the people who need it and becomes a meaningful part of care after diagnosis.
Through The Emma & Bruce Willis Fund for Dementia Research and Caregiving Support, my goal is to raise funds for future grants to AFTD to expand the Roadmap’s reach, support its use in clinics, and collect data to understand how it is being used and where it can do more.
My longer-term hope is to use what we learn to advocate for policies that make a care roadmap a standard part of every neurological disease diagnosis.
No one should have to leave a diagnosis appointment wondering how to figure it all out alone.
Built Through Collaboration
The FTD Care Roadmap was developed in partnership with me, The Association for Frontotemporal Degeneration (AFTD), the University of California, San Francisco (UCSF), and UnRavelled: A True Story of Transformation.
Need support now?
You can reach AFTD’s HelpLine at 866-507-7222 or info@theaftd.org.