Newly Diagnosed

You don't have to face this journey alone.

Diagnostic Checklist Icon2

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.

An FTD diagnosis can be overwhelming in many ways. AFTD's "Newly Diagnosed Checklist" was created to guide persons diagnosed and their families on steps to take to help adjust to the changes ahead.

AFTD is pleased to also share our Newly Diagnosed Checklist in Dutch, French, Italian, and Polish. These translated documents have been made possible with the generous support of AviadoBio.

AFTD provides resources to help you understand FTD and ways to stay active, engaged, and become informed about services, supports, and some emerging treatments that can maximize quality of life. Sign up for our mailing list for the most current information.

Learn About the Disease

AFTD’s booklet “The Doctor Thinks It’s FTD. Now What?” is a detailed 36-page guide has information about each type of FTD, how to make 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.

The doctor thinks it's AFTD Now What booklet cover

Create a Care Team

Quality health care in FTD depends on finding the right health professionals, advocating for services, arranging payment, and following up. However, coordinating care at this level can be a dauntingly complex task. AFTD's Coordinating Care section orients you toward the health care providers who can best help your loved one with FTD.

If you have a question about living with FTD or caring for a loved one who is diagnosed, please contact our HelpLine by phone at 866-507-7222 or via email at [email protected].

Join a Support Group

Life with FTD can be extremely isolating. That’s why it’s so important to develop a network of social, emotional, and practical supports.

For Persons Diagnosed - AFTD hosts a monthly virtual support group. Contact the HelpLine at 866-507-7222 for more information. AFTD's Support for People With FTD  lists additional support options. 

For FTD Care Partners - AFTD maintains a list of local in-person and virtual support groups in your state to help care partners manage the challenges of FTD caregiving. New groups are added regularly.

Follow a Daily Routine

Many people with FTD, as well as their care partners, benefit from following a regular daily routine. Predictable patterns and activities — meals, household tasks, physical activity, hobbies, social interaction, spiritual development, a regular sleep schedule – provide an important framework for both the person with FTD and the caregiver. 

While routines are important, FTD is unpredictable, so it is important for care partners and persons diagnosed to remain flexible. While you may not be able to do things as quickly or easily as before, activities can be adapted and still provide enjoyment. As symptoms progress, it may become necessary to discontinue some activities.

Manage FTD Symptoms

Since people with FTD often cannot control their behavior, care partners and caregivers must adjust their own expectations when it comes to managing these symptoms. AFTD provides care advice in the Managing FTD section. 

Stay 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 FacebookTwitterYouTube, Instagram, and TikTok.

Find Help


From support groups to printable checklists, we have helpful resources whether you are newly diagnosed, a caregiver or a family member.