Newly Diagnosed

Not too many people find AFTD by accident. Most likely, you have found us because you, a family member, or friend has been diagnosed with one of the frontotemporal degeneration disorders (behavioral variant FTD, primary progressive aphasia, corticobasal degeneration, FTD with motor neuron disease or progressive supranuclear palsy). While the road ahead may seem daunting, AFTD is here to provide information and support throughout your journey.

NewlyDxcover

AFTD has published a booklet that helps individuals with FTD and their families take a strategic approach to the diagnosis and prepare for the changes it brings.  Download an electronic version of  A Guide for Managing a New Diagnosis – The Doctor Thinks It’s FTD. Now What?  or click here to order a hard copy.

What is frontotemporal degeneration (FTD)?

One of the most important tasks when you are confronted with a diagnosis of FTD is to learn about the disease.  Understanding the symptoms and general course of the disease will guide how you approach ways to stay active, engaged and become informed about services and supports that can help.

The Understanding FTD section of this website includes a disease overview, detailed descriptions of each of the FTD disorders and information on other aspects of the disease.

The Need for Support

FTD can be a very isolating disease unless you take active steps to develop a network of social, emotional and practical supports.  No one – even the most capable, loving and determined – can manage everything alone.  Connecting with others who understand FTD can be a lifeline.

The Life with FTD section of this website provides a variety of resources that may help. You will find reliable information, caregiver experiences, and places to turn.

  • There are an increasing number of support options for people with FTD.  Visit I Have FTD.
  • Face to face, telephone and on-line support groups for caregivers are described in the Support section.Face to face groups are listed on the page of activities for each geographic region.

Planning for Care

Upon diagnosis you are quickly faced with many questions about finding good health care and anticipating future needs.  Remember, not everything has can be done – or has to be done – at once.  Identify a few priorities that will help you establish a strong foundation on which to build: create your care team and address financial and legal planning. While it may be uncomfortable to address issues that anticipate progression of the disease, early planning allows the person with FTD to participate in decision-making as fully as possible.

  • For an overview of topics related to creating and coordinating a care team visit, Managing Health Care.
  • For information on Power of Attorney, Social Security Disability benefits and other legal and financial topics visit Legal and Financial Planning.

While this can be a very difficult time for you and your family, you are not alone.  AFTD offers a connection to individuals, families and healthcare professionals who understand the impact of FTD on people’s lives.

Next Steps

Visit Confident Caregiving for tips that will encourage you to learn skills and develop confidence in decisions as you move ahead.

Download a checklist of activities for a strategic approach to the diagnosis.

Read This Moment for one caregiver’s reflections on adjusting to her husband’s diagnosis with FTD.

Read Structuring the Day for one approach to creating a positive daily routine that benefits the person with FTD and their caregiver.

Get to know AFTD.  Sign up for our newsletter and other communications to stay current on developments at AFTD and in the field. (See the home page.) Contact AFTD’s HelpLine with questions or if you want to get involved:[email protected] or toll free at 866-507-7222.