You don't have to face this journey alone.
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 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
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.
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 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.
- Read the Help & Hope blog post: Developing a Routine to Keep Active
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.
From support groups to printable checklists, we have helpful resources whether you are newly diagnosed, a caregiver or a family member.