After receiving an FTD diagnosis, persons diagnosed and their care partners may wonder how to share this news with friends and family, even as they are just beginning to understand it themselves. Deciding when and how to share the diagnosis is a personal choice: Those who choose to tell others what they are facing may feel empowered and find themselves better able to gain support, but family situations and support systems vary tremendously.

Before FTD is correctly diagnosed, unexplained behavioral symptoms or changes to one’s personality may create confusion, anger, and frustration among family and friends. Professional colleagues may disengage. Familial relationships may become strained, and marriages may even end. While an FTD diagnosis provides clarity, it does not ensure that others will accept that the disease is the true cause of behavioral changes and other symptoms. Understanding an FTD diagnosis takes time, and while some relationships may be tested, others will be strengthened. Consider reaching out to family, friends, and others in your network who you trust will be willing to learn about the diagnosis and provide help throughout the FTD journey.

Some people pull the whole family together for a meeting to educate them about FTD and ask for assistance. Others write a letter outlining the situation, and still others prefer to talk with just a few people one on one. In some cases, a spokesperson can be identified to share the diagnosis, taking pressure off the person diagnosed and their primary care partner. Joining an FTD support group can help you discuss your plan with other care partners and persons diagnosed who have been through this process.

When considering what to share, start by offering information and giving a basic outline of what you know, acknowledging that you may still have your own questions about the diagnosis. Use information and resources from AFTD (see below) to support you, and refer others to AFTD’s website and HelpLine if they have additional questions. AFTD offers a wealth of information in multiple formats that may help others better understand the diagnosis, including webinars, booklets, research articles, and firsthand accounts written by people living with FTD. Share that AFTD’s network of support is available for friends, family, and adult children who may not live in the same household.

Finally, remember that not everyone will understand equally. Everyone will bring their own unique history with the person diagnosed, and will have their own unique reaction. Be patient, and be ready to provide more information when the opportunity presents itself.

Additional Resources to Share:

• FTD Fact Sheet
• FTD Overviews
• Awareness Cards
• NIH Booklet on FTD
• AFTD HelpLine: info@theaftd.org or 866.507.7222