How do you like to get your information – video, books, surfing the web?  There is a growing body of information available to help you learn about frontotemporal degeneration as well as related issues in research and caregiving. This section of AFTD’s website contains some resources that you may want to consider. And remember, please let us know if you are aware of something we should add.

Respite and Travel Grants

The Association for Frontotemporal Degeneration offers modest financial assistance for caregivers interested in attending an FTD caregiver conference. The Comstock Respite and Travel Grant Program may be used to defray the cost of travel, lodging, conference fees and/or respite for your loved one in order to attend.

Support Groups

AFTD maintains a list of FTD-specific support groups from around the country. We also sponsor specialized phone-based support groups for male caregivers, caregivers who have children in the home, and caregivers dealing with specific symptoms of FTD.

Awareness Cards

In an effort to help our patients and caregivers when in public settings, AFTD has created two sets of “awareness cards”–one for caregivers and one for patients–to present as situations warrant.  These cards let customer service people (wait staff, receptionists, etc.) know that language and behavior may be an uncontrollable issue for an FTD patient.  The cards are available for download and use as appropriate.  They are set up in business-card-size format for conveniently carrying in a wallet.

Publications and DVDs

This page contains information about publications from AFTD,  a short documentary introduction to FTD called  It Is What It Is, and several other recommended resources.

Recommended Reading

This book list is compiled from recommendations by AFTD families and staff.  The books are grouped by broad topic areas to help you find what you want. Books written by friends of AFTD as tributes to loved ones are found under the Sharing our Stories tab.

Provider Letter

A letter is available for use by people with FTD and their caregivers to inform healthcare and other professionals about FTD. The letter is designed to come from the caregiver and provides a brief overview and symptoms of FTD, and encourages the professional to learn more in order to provide optimal care or services.

Useful Links

Many of the organizations you may be interested in have informative websites.  Visit the useful links page to see what other groups are ready to help.


We have compiled responses to some of the most frequently asked questions that come to our HelpLine.  Browse through to see if you have been wondering any of the same things.