FTD Basics

What is frontotemporal degeneration?

Frontotemporal degeneration (FTD), also sometimes called frontotemporal dementia or frontotemporal lobar degeneration (FTLD), is a neurodegenerative disease that affects the frontal and anterior temporal regions of the brain. These areas control personality and social behavior, speech and language comprehension, and “executive functions” involved in reasoning, decision-making and planning.

FTD is not like Alzheimer’s disease though some of the symptoms may overlap. FTD is characterized by a gradual onset of progressive changes in personality, social behavior, and language ability, rather than memory. Because of its symptoms, FTD is often initially misdiagnosed as a psychiatric problem or Alzheimer’s disease, or in the case of corticobasal syndrome, it can be mistaken as Parkinson’s disease.

This is a very brief description. A more complete overview is provided in the Understanding FTD section of this site, which also provides detailed descriptions of each of the separate FTD disorders. If you or your loved one has been diagnosed with one of these specific disorders we suggest you read the detailed description for that disorder as well as the page titled Frontotemporal Degeneration.

The Need for Support

Frontotemporal degeneration is one of the most common dementias in the younger population and is estimated to represent 10%-20% of all dementia cases. Still, most people, even many health professionals, have never heard of it. You may feel alone as you begin to face FTD, but there are many people that can help. Reaching out for information and support is one of the most important things you can do.

The Life with FTD section of our website provides a variety of sources that may be of help. You will find reliable information, caregiver experiences, and places to turn. Don’t see what you need? Contact us directly at info@theaftd.org or call our toll free HelpLine at 866-507-7222 with your questions. Leave a message and someone will get back to you usually within one business day.

Planning for Care

You will find that you are quickly faced with many questions about finding good health care and anticipating future needs. Because of challenges in getting a clear diagnosis, people may be at many different points in the progression of symptoms when they first learn of FTD. However, once you become oriented to the diagnosis, we encourage you to think about plans for the future to maximize the participation of your loved one in those decisions. Background on health care resources is found under Managing Health Care and issues related to paying for care and decision making powers are outlined in Legal and Financial Issues.

In addition to this website, one of the best resources you can turn to is the book What If it’s Not Alzheimer’s. This manual on FTD was edited by Lisa Radin, one of our founding board members and her son. It contains a wealth of information about the disease, caregiving issues and accessing needed resources. Each chapter is written by experts in the field. The book was recently updated in 2008 and is available through AFTD or Amazon.com.

Finally, you might want to refer to our FAQ (Frequently Asked Questions). And, if you cannot find what you are looking for there, try our search function.

Thank you. We hope this brief overview has been helpful and that you will turn to our website again and again both as a resource and to keep up to date with all that is happening with FTD. Losing someone to one of the FTD disorders can be a challenging, heart rending process. The Association and this website are here to help. Please explore it freely; there is a wealth of information here to help you.

So, to get started…

  1. Read the descriptions of the disease under Understanding FTD
  2. Check out the Life with FTD section of this website
  3. Check out our homepage and What’s Happening periodically
  4. Click on our U.S and Canadian Regions to see what resources might be near you
  5. Register with us to receive our newsletter and other news updates (see right sidebar).