Association for Frontotemporal Dementias

Newly Diagnosed

Welcome to the Association for Frontotemporal Degeneration. We’re glad you found us!

Not too many people find us by accident. Most likely, you have found us because you, a family member, or friend has been diagnosed with frontotemporal degeneration or one of the disorders under the FTD umbrella (frontotemporal dementia (bvFTD), progressive aphasia, semantic dementia, corticobasal degeneration, FTD with motor neuron disease or progressive supranuclear palsy).

No doubt you have more questions than you have answers. This part of our website is here to help get you started. You may be overwhelmed with questions, immediate concerns and longer-term issues about how this illness will affect you and your family. You may be concerned about a spouse, parent or adult child. FTD often strikes in middle-age so it is not uncommon for families to still have children at home or in college while at the same time coping with a parent with FTD. Each person’s particular situation will be different, but you are not alone.

While the road ahead may seem daunting, the Association is here to provide information and support. Learning about FTD is a process and cannot be done all at once. Use these pages to become familiar with the FTD disorders and explore our entire site for additional information and resources. You are invited to print any information found on AFTD’s website to review later or share with others. You also can contact us directly through the HelpLine (866-507-7222) or [1].

We realize that this can be a difficult time for you and your family, and we are here to help. One of the biggest things that AFTD has to offer families dealing with a new diagnosis is a sense of community-the opportunity to connect with healthcare professionals and other families who understand first-hand what you are going through.

AFTD was founded in November 2002 by a group of current and former caregivers who were frustrated at the lack of information and support for those coping with frontotemporal degeneration. The Association has grown over the years and now provides significant funding for research, support for caregivers, and education to caregivers as well as health professionals. We are confident that the continued collaboration of patients, families and health professionals is opening the gateway to help and a cure.NewlyDxcover [2]

AFTD has created a publication that helps individuals and families take a strategic approach to a diagnosis of FTD and prepare for the changes it brings – A Guide for Managing a New Diagnosis – The Doctor Thinks It’s FTD. Now What? [3].  If you are requesting more than 4 copies, please click here for our order form [4], which includes a $1/book charge to cover shipping costs.