Actor Bruce Willis was first diagnosed with aphasia in the spring of 2022 and later with frontotemporal dementia (FTD) nearly a year after. FTD is a disorder that can affect personality, social skills, and speech.

Willis's experience is not uncommon. On average, it takes 3.6 years to receive an accurate diagnosis for FTD. This week, from September 22 to 29, marks World FTD Awareness Week, which aims to raise awareness about this often misunderstood and misdiagnosed disorder.

"FTD is vastly underdiagnosed due to lack of awareness among the general public and clinicians, therefore, the need for these public awareness campaigns, resolutions and proclamations," said Darby Morhardt, a research professor at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University Feinberg School of Medicine. The center has been a leader in FTD diagnosis, treatment, research, and care.

Journalists interested in speaking to experts or patients with FTD at the Mesulam Center can contact Kristin Samuelson.

"Our clinic has always seen a fairly steady number of people living with FTD," Morhardt stated. "But we are a specialty clinic where people find us eventually after seeing two to three physicians or more and living with a lot of confusion, anxiety and uncertainty often for years before they get an accurate diagnosis."

FTD encompasses a group of brain disorders caused by degeneration of the frontal and/or temporal lobes. It affects individuals between ages 21 and 80, with most cases occurring between ages 45 and 64.

One type of FTD is primary progressive aphasia (PPA), which destroys language abilities. Dr. Marsel Mesulam discovered PPA, also known as Mesulam’s disease. More information on Mesulam’s discovery of PPA and the work done at the Mesulam Center can be found through their resources.