Newly Diagnosed

You or a loved one has been diagnosed with a form of FTD. What’s next?

Too often, people receiving an FTD diagnosis have been told that there is nothing they can do, and that there are very few places to turn to for understanding and support.

Our organization – and the volunteers who make up our community – are dedicated to changing that experience.

In connecting with AFTD, you’ve found a community of people who understand, and a source of information, resources, help, and hope for a better future. Support, connection and the latest information on managing FTD are all available here. You don’t have to face this journey alone.

By staying connected with AFTD, you’ll have a knowledgeable partner – and a reliable source of help and information – by your side every step of the way.

The Doctor Thinks It’s FTD. Now What?

The Doctor Thinks It's FTD. Now What? Booklet cover.

AFTD’s booklet “The Doctor Thinks It’s FTD. Now What?” is an excellent place to start. This detailed 36-page guide has information about each type of FTD, a guide to making the most of your doctor visits, tips for creating a care team and a daily routine, and more invaluable guidance.

Download PDF, or Order a print copy.

Getting Information

Learning as much as you can about FTD is crucial. The What Is FTD? section of AFTD’s website is the best resource, compiling the most accurate information available about FTD’s various forms and symptoms.

Understanding the general course of the disease will guide how you approach ways to stay active, engaged, and become informed about services, supports and some emerging treatments that can maximize quality of life.

Finding Support

Life with FTD can be extremely isolating. That’s why it’s so important to develop a network of social, emotional and practical supports. AFTD can help you forge connections with people who understand FTD.

For Persons Diagnosed

  • AFTD holds a monthly online support group using the internet video platform Zoom. Contact the HelpLine at 866-507-7222 for more information.
  • Visit Support for People With FTD for words of encouragement from people who have FTD and additional support options.

For FTD Care Partners

  • Support for Care Partners offers information about in-person, online and telephone support groups to help you manage the difficulties of FTD caregiving.
  • Managing FTD can help to explain why your loved one is acting differently, and what you can do to respond effectively to challenges and changes in symptoms or behaviors.
  • Coordinating Care orients you toward the health care providers who can best help your loved one with FTD.

Staying Connected

Now that you’ve found AFTD, it’s important to stay connected. For the most up-to-date news on AFTD, caregiving information and FTD research, sign up for our newsletters, and follow AFTD on Facebook, Twitter, YouTube, and Instagram.

Like AFTD on Facebook Follow AFTD on Twitter Watch AFTD on YouTube Follow AFTD on Instagram