Publications and DVD

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***NEW!  A Guide for Managing a New Diagnosis – The Doctor Thinks It’s FTD. Now What? is a publication from AFTD that helps individuals and families take a strategic approach to a diagnosis of FTD and prepare for the changes it brings.


 Understanding the Genetics of FTD: A Guide for Patients and Their Families In collaboration with AFTD, The University of Pennsylvania Center for Neurodegenerative Disease Research has created a booklet of current and reliable information on the role that genetics plays in FTD, the genes that have been associated with hereditary FTD, and genetic testing.


WhatAbouttheKids CoverWhat About the Kids? Booklet – The AFTD Task Force on Families with Children has written and produced a brand new tool for parents with young children and teens. What About the Kids? is a sensitive, practical guide for parents to help their children deal with a parent who has FTD.


You can download a .pdf  of the publications by clicking on the title above. To request 1-5 copies of the printed booklet contact  For a  total of 6 or more copies by mail, please click here for our on-line order form, which includes a $1/book charge to cover shipping costs.


It Is What It Is – A powerful, 18-minute film by AFTD to increase understanding

Frontotemporal degeneration robs its victims of the very things that make them unique as human beings- their personality, their emotions, and their ability to communicate. It Is What It Is chronicles four families as they confront FTD. By telling their stories, these families reflect experiences common to many and become harbingers of hope.  The DVD is accompanied by a 12-page informational booklet (free to download) on frontotemporal degeneration.

Produced by the Association for Frontotemporal Degeneration, 2011. Order form available for download: It is What It Is order form, or click here to order online.


The National Institute on Aging has a consumer-friendly booklet, Frontotemporal Disorders: Information for Patients, Families, and Caregivers. The free, 30-page booklet, which includes contritubutions from AFTD, explains the disorders, causes, symptoms, and management in layman’s terms. To read the booklet or order copies, click here or call 1-800-438-4380.