The COVID-19 pandemic that has gripped the world over the last several months has brought new and compounded challenges for people living with FTD, their care partners and family members, and health professionals who provide essential care and assistance.

The restrictions set in place to contain the virus have upended care routines, increasing caregiver burden and bringing new worries about safety. People already dealing with the stress of an FTD diagnosis may now be facing even greater feelings of frustration, anxiety, and grief. Visits to care facilities are restricted, and isolation and difficulties with communication are adding their own hardships.

AFTD’s staff, Board and expert advisors are responding to the new and newly evolved needs of our community. Members of the AFTD Medical Advisory Council (MAC), a group comprising two dozen of the world’s leading experts on FTD, have begun contributing “Expert Letters” to our website detailing specific aspects of what it means to deal with FTD during the pandemic.

Some examples include Dr. Ted Huey of Columbia University, who suggests ways to handle and cope with some of the challenges of living with FTD during this time, and Dr. Irene Litvan of the University of California, San Diego wrote about how to lower the risk of COVID-19 while living with FTD. Other leading FTD experts, including Dr. Beth Rush of the Mayo Clinic Florida, have also contributed Expert Letters.

Additionally, AFTD is adding COVID-specific resources to our website. Since March, we have published a guide to handling hospitalization and other emergency medical visits during the pandemic, strategies friends and family can use to provide help and support from a distance, and ways to ensure that persons living with FTD maintain proper hygiene at a time when hand-washing has never been more important.

The pandemic caused the cancellation of AFTD’s 2020 Education Conference, which had been scheduled to take place in Baltimore in April. But in its place, AFTD put together an Education Conference Webinar Series. The five webinars in the series included information to help families better manage their journeys in the ever-changing environment, each presented someone whose life has been touched by FTD. The sponsors of our Baltimore conference generously sponsored the Education Conference Webinar Series as well. To access these resources, and many more, visit the dedicated COVID-19 page we have established on our website.

Know that together, we can move past the challenges presented by COVID-19 — and that you’re not alone in this. If you have any immediate questions or concerns you would like to discuss with us, contact AFTD’s HelpLine by calling 866-507-7222, or emailing info@theaftd.org.