Family gatherings over the holidays provide an opportunity for connection and visiting with loved ones—and can also be a chance to share significant life updates, such as a new diagnosis of FTD. Many people are not familiar with FTD, and it can take time for them to learn, understand, and accept the diagnosis. Before FTD is correctly diagnosed, unexplained behavioral or personality changes may create confusion, anger, and frustration among family and friends. Consider the relationships in your family and how family members may react as you plan what to share. While some relationships may be tested, others will be strengthened.

Some families will consider sending out a message with some basic information before a gathering to help others emotionally prepare and lay the foundation for knowing what to expect. AFTD resources such as the FTD Fact sheet and the FTD Overview web page can help give introductory information for those unfamiliar with the diagnosis. Experiences and symptoms with FTD can vary significantly. Based on your specific situation, additional resources such as overviews of bvFTD, FTD-ALS, PPA, PSP, CBS or specific symptom information such as anosognosia or apathy can offer more insight.

At the gathering, you can consider meeting individually with friends or family members or plan a larger meeting, depending upon your relationships and needs. Start by offering information and giving a basic outline of what you know while acknowledging that you may still have your own questions about the diagnosis.. 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. Explain that AFTD is a resource for anyone who is looking for more information, resources, and support for FTD.

Children and teens will often notice changes with a loved one but need the support of trusted adults to understand and cope. AFTD offers resources to help parents and grandparents consider how to share information about FTD with children and teens through the resources below:

Many will ask how they can help and support you. It can feel uncomfortable to ask and receive help and others may need your guidance on how to best support you. Before the gathering, take time to make a list of practical tasks others may be able to help you with, and have it ready to share with those who ask. This may include help with meals, household maintenance, or yard work, or remote help such as research and phone calls. Even if you feel you can manage these tasks alone now, a support network you begin to build now can help you devote time and energy to other tasks and provide a foundation of help for the road ahead.

While an FTD diagnosis can provide clarity, it does not ensure that others will accept and understand that FTD is the true cause of behavioral changes and other symptoms. Everyone will bring their own history with the person diagnosed and will have their own unique reaction.  Some may even question the diagnosis or attribute the changes to something else entirely. Even when meant well, these statements can be hurtful and frustrating, especially for those who have already gone through a long journey to obtain a diagnosis. Staying focused on what you know to be true, setting boundaries and finding trusted peers who can be in your inner circle of support can help you navigate these complicated reactions.

Additional FTD resources can be found below. Consider your family relationships and needs to select resources that will connect with them, knowing many may need time to process and revisit information over time.