Support for People with FTD

A range of different resources are available to help people living with FTD participate in the lives of their family, friends, and community after diagnosis. The items below will help you learn about the diagnosis, make arrangements for care, and find support and practical advice from peers who are also living with FTD.

Painting called Sensory Overload by Max McCormick

AFTD’s HelpLine is here for you. You can ask about:

  • Information on FTD
  • Support options
  • The special online support group that AFTD convenes each month using Zoom
  • Opportunities to get involved with FTD
  • Information on participating in research

HelpLine: 866-507-7222 or info@theaftd.org

“Sensory Overload,” by Max McCormick

Staying Active

For many people, adjusting to the loss of employment and other ways FTD can restrict activities is challenging. Consider ways to get involved with an organization in your community to stay engaged in the things you care about. If you are interested in volunteering with AFTD to raise awareness of FTD, or to support our mission, visit our Volunteer Network page. 

AFTD Education Conference

AFTD offers an annual FTD education conference that includes people living with FTD in sessions and as speakers. This is a great opportunity to meet others living with FTD. Modest financial assistance is available through the Comstock Travel Grant program to defray the cost of travel to the conference.

Comstock Quality of Life Grants

AFTD offers modest grants to people living with FTD for help accessing services or supports that will improve their quality of life. The grants will be awarded to individuals in the U.S. with a documented FTD diagnosis. Funds can be used, with the support and supervision of a primary caregiver as necessary, for the goods or services of their choosing. For more information, visit the Comstock Grants home page.

Persons with FTD Advisory Council

The AFTD Persons with FTD Advisory Council was formally chartered in 2020. Its members help to ensure that the insights and voices of people living with FTD are considered in the development of AFTD’s policies, programs and services.

Finding Peer Support

FTD can be a very lonely disease. Finding others who understand what it is like to live with FTD can offer emotional support and practical tips for coping in daily life. More support for people with FTD is becoming available. Some options to consider are:

Web-based (Zoom) Support Group

AFTD Support Group for People with FTD. A mutual support group that is facilitated by AFTD staff and meets monthly via Zoom. Contact info@theaftd.org or 866-507-7222 for more information.

PPA Support Options

For more information, contact the AFTD HelpLine (info@theaftd.org or 866-507-7222.)

Face-to-Face Support

It can be difficult it find local FTD specific support options. However, many communities offer younger onset or early stage dementia support groups that focus on adjusting to a new diagnosis, finding ways to adapt and live positively. Check with the local Alzheimer’s Association or memory care center for groups in your area.

Online Support

Find Help

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

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