Pandemia Covid-19, która ogarnęła świat w ciągu ostatnich kilku miesięcy, postawiła nowe i złożone wyzwania dla osób cierpiących na FTD, ich partnerów w opiece i członków rodzin, a także pracowników służby zdrowia zapewniających niezbędną opiekę i pomoc.

Ograniczenia wprowadzone w celu powstrzymania wirusa wywróciły do góry nogami rutyny opieki, zwiększając obciążenie opiekunów i wywołując nowe obawy o bezpieczeństwo. Osoby, które już zmagają się ze stresem związanym z diagnozą FTD, mogą teraz doświadczać jeszcze większego uczucia frustracji, niepokoju i żalu. Wizyty w placówkach opiekuńczych są ograniczone, a izolacja i trudności z komunikacją dodatkowo utrudniają życie.

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 Doktor 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 Doktor Irena 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.