When a loved one is diagnosed with FTD, it is natural to worry about whether others in the family are also at risk. About 60% of people diagnosed have sporadic FTD, meaning that there’s no known family history of FTD.

About 40% of people with FTD have other family members with FTD or related diagnoses like ALS, other types of dementia, language problems, a psychiatric condition, or a movement disorder. In these families, FTD is more likely to be genetic. Importantly, up to 10% of people with no known family history of FTD have an identifiable genetic cause.  Even when FTD appears to be sporadic, it may still be genetic and passed to the next generation.

Taking this into consideration, AFTD recommends everyone diagnosed with FTD be offered genetic counseling and testing, regardless of family history.

More than a dozen genes are known to cause FTD and more may be discovered. Whenever possible, genetic testing should begin with the person who has FTD symptoms. If the person diagnosed has negative genetic testing, testing an unaffected family member will not be informative.

Before scheduling a genetic counseling appointment, we recommend reviewing AFTD’s webinar Navigating Social and Legal Challenges in Familial FTD. It covers important topics such as privacy concerns, how to limit potential risks, and what legal protections exist. This webinar will help you understand your rights, and the laws meant to prevent some forms of genetic discrimination.

When possible, adult relatives should try to attend the pre-test genetic counseling session. This allows everyone to hear the same information and ask questions. In some cases, hearing the counseling without creating a record in your own medical chart may be helpful.

If you decide to proceed with genetic testing, the process is usually simple. Most laboratories send a cheek-swab (“buccal”) kit directly to your home. You swab the inside of your cheek, send the kit back, and results typically return within 4–6 weeks.

Many families are unsure where to start. Your first step should be contacting the healthcare professionals who diagnosed you or your loved one. They may be able to arrange genetic counseling directly. AFTD offers a helpful webinar explaining the different paths to genetic counseling and testing.

There are telehealth genetic counseling practices that offer pre- and post-test genetic counseling, and depending on your state’s laws, may order genetic testing for you. Some comprehensive neurology programs offer full evaluations, genetic counseling, testing, and care management via telehealth while coordinating imaging or other studies locally.

For most people diagnosed with FTD, insurance will cover genetic counseling and testing. When using insurance, it is important to consider deductibles and out-of-pocket costs. Some laboratories will offer a discounted fee for people who opt to pay out of pocket. It is important to explore this option because the reduced fee may be less than your deductible.

Some programs offer both genetic counseling and testing at no cost. These are funded by research organizations interested in identifying people who may someday benefit from their work. These sponsors do not receive your personal information. Your genetic counselor may ask whether you would like to be contacted about research opportunities, but there is no obligation to participate.

These programs include pre-test genetic counseling by telehealth, sample kits mailed directly to your home, with results discussed in an appointment 4-6 weeks later.

It’s important to understand that not all research protocols will return results to you. When genetic testing is performed through research, it is not part of your medical record. If you wish to participate in a clinical trial, the result may need to be confirmed in a clinical (fee-for-service) laboratory.

AFTD offers several resources to help families stay informed:

In a rare disorder like FTD, numbers matter. The Registry helps researchers understand the impact of FTD on families and guides future studies.

If you would like help finding genetic counseling, exploring no-cost testing options, or learning more about FTD genetics, the AFTD HelpLine is here to support you every step of the way. Call our toll-free number at 866-507-7222 or email info@theaftd.org.