Help & Support #86: Understanding an FTD-ALS Diagnosis

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May is ALS Awareness Month, a month dedicated to increasing awareness of amyotrophic lateral sclerosis (ALS), and advocacy for those impacted by the disease. In conjunction with these efforts, AFTD is working to initiate conversation around the intersection of ALS and FTD, which share an overlapping disease pathology.

The C9orf72 gene is the most common gene that causes familial FTD, familial ALS, and ALS with FTD. As many as half of those with ALS exhibit behavioral changes or a decline in language skills similar to persons with behavioral variant FTD or primary progressive aphasia. Research reveals that up to 30 percent of people diagnosed with FTD develop motor symptoms consist with ALS. The average lifespan for persons with FTD-ALS is typically shorter compared to persons living with a singular FTD disorder. We provide an overview of symptoms associated with FTD-ALS and what to expect when facing a dual diagnosis on the FTD and ALS page.

Caring for a loved one with FTD-ALS can be extremely challenging and AFTD offers resources to help. Former FTD caregiver Miki Paul, PhD, wrote about her experience caring for her late husband, Chuck, who had ALS with FTD in the Spring 2018 issue of AFTD’s Partners in FTD Care newsletter. She shares that it was difficult to find and connect with others providing care for loved ones with an ALS with FTD diagnosis. As a result, she encouraged AFTD and the national ALS organization to start a national phone-based support group for caregivers of those living with this dual diagnosis.

“In the months before my husband died, I was able to participate in the new group a few times, which made me feel so grateful. The group was a ray of sunshine for me; I felt so desperate to connect with others going through a similar experience,” Dr. Paul wrote.

The Spring 2018 issue of Partners in FTD Care also includes an in-depth clinical look into ALS with FTD, as well as additional information on the genetic components of the dual diagnosis. And this AFTD webinar presented by Beth Rush, PhD, ABPP, of the Mayo Clinic in Florida provides an in-depth look at the ALS-FTD overlap experience. Dr. Rush’s presentation examines ideal approaches for monitoring and responding to symptoms over time.

Since 2020, AFTD, in collaboration with the Target ALS foundation, has been working to help advance momentum in the discovery of biomarkers and viable treatments for ALS and FTD. Through this partnership, Target ALS and AFTD are leveraging the combined expertise of researchers in these fields by funding collaborative projects that will inform, and potentially result in, both viable treatments and the biomarkers critically needed to enable accurate diagnosis and measure disease progression. For more information on the AFTD/Target ALS partnership,  click here.

Our understanding of FTD with ALS is continuously expanding, and AFTD is here to help guide and support families facing this dual diagnosis. Stay up to date on the latest scientific news on FTD-ALS here. You can also access information and support by contacting AFTD’s HelpLine via telephone (1-866-507-7222) or email (info@theaftd.org).

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