Dear HelpLine,

Each time I visit home for the holidays and see firsthand how FTD has affected my parent, my anxiety increases. Is it normal to worry that other family members will develop FTD, too – or that I will get it myself?

The holiday season is a time for family gatherings. While opportunities to see loved ones can bring much joy, they can also create anxiety when FTD is involved. Seeing how FTD has affected your family can cause profound emotional reactions, and even cause you to wonder about your own future. Perhaps you worry that you or other family members may develop symptoms of FTD.

You are not alone; this is a common worry. But it may help to better understand how FTD is passed down – or not passed down – within families. The majority of people with FTD (approximately 60%) have no other affected relatives or genetic cause. For these people FTD appears to be “sporadic.” There is no family history of FTD or related conditions, including ALS, mental health disorders, or other dementias.

A smaller portion of FTD is familial in nature, meaning that there is, in fact, a family history of FTD and/or related conditions. Some of those with familial FTD may have specific genetic causes – variants in certain genes that are known to cause FTD.

When one’s genetic risk of FTD is unknown, uncertainty can weigh heavily on them. Experience and research have shown that most people who undergo genetic counseling and genetic testing for FTD experience a reduction in anxiety — even if their results confirm a genetic predisposition for developing FTD.

Unlike most other medical tests, genetic tests can reveal information not only about the person being tested but also their relatives. Family members may have differing opinions about learning if there is a genetic cause in the family. Discussions among family members can be complicated if some choose to learn their genetic status while others do not. Family relationships can be strained if a person discloses genetic test results that have implications for other relatives. Speaking to a genetic counselor can help you consider and navigate these and similar situations.

We know many people are apprehensive about genetic testing. Genetic counseling can help you understand the benefits and limitations of testing, anticipate how results may make you feel, consider the impact genetic test results may have on your relationships with others, and decide if genetic testing is right for you at this time in your life. You can hear about other peoples’ experiences with genetic counseling and what factors helped them decide whether to test by watching the 2023 AFTD Educational Webinar “Genetic FTD: To Test or Not to Test.”

You can meet with a genetic counselor individually or with a family member or friend. Your genetic counselor can answer questions about FTD and review your family history to help you understand whether it could be inherited in your family. Genetic testing is only a small part of the discussion, and there is no expectation that a person must test. If you are interested in testing, your genetic counselor can help you consider how the results could impact you and your family.

FTD can bring challenges to any family. Our relationships with each other, and our roles and responsibilities, change over time, sometimes in unexpected ways. Adapting to these changes can feel overwhelming and isolating. Finding community and connection with others who understand can offer enormous support.

If you still have questions or are looking for support, the AFTD HelpLine is here to help. You can reach the HelpLine at 1-866-507-7222 or info@theaftd.org