What Is Frontotemporal Dementia, the Disease Bruce Willis Is Diagnosed With?

Blog Post - What is FTD

Today, the family of Bruce Willis announced that the 67-year-old actor has been diagnosed with frontotemporal dementia (FTD), also known as frontotemporal degeneration.

FTD is the most common dementia for people under 60, although it can also affect those in their 60s, 70s, or beyond. While the term “dementia” is most often associated with memory loss, frontotemporal dementia is different: It is far more likely to affect one’s personality, behavior, language, and movement, due to the specific areas of the brain affected (the frontal and temporal lobes).

Currently, there are no approved treatments for FTD, and there is no cure. People diagnosed with FTD face a life expectancy ranging from 7 to 13 years.

An estimated 50,000 to 60,000 people in the U.S. have been diagnosed with an FTD disorder. Experts believe the number of people living with FTD is likely higher, however, because healthcare professionals often don’t initially associate its symptoms with dementia. Misdiagnoses, such as depression or another psychiatric disorder, are common. Consequently, it takes an average of 3.6 years following the first appearance of symptoms to obtain an FTD diagnosis.

There are several subtypes of FTD. The most common, behavioral variant FTD, can cause the person affected to act uncharacteristically, develop unusual or compulsive habits, and experience a deficit in problem-solving, decision-making, and other executive functions. Primary progressive aphasia, the language variant of FTD, affects communication; people with PPA struggle to speak and/or understand written and spoken language. Other subtypes, such as progressive supranuclear palsy and corticobasal syndrome, affect movement, including one’s gait, posture, and balance. Regardless of subtype, FTD symptoms can progress in unpredictable ways and at an unpredictable rate – an aspect of the disease that further complicates diagnosis.

Anyone whose life has been touched by FTD knows its devastating impact. It can derail careers during the peak earning years of 45-64, permanently upend established family dynamics, and impose a significant financial burden. A 2017 study co-written and funded by AFTD shows that its economic impact is approximately $120,000 per year – more than twice the estimated costs experienced by families with Alzheimer’s.

While there is no cure today, there are many reasons for hope in the future, including rapidly increasing awareness, greater advocacy, and important recent strides in research. Currently, researchers are at work on at least six clinical trials for disease-modifying drugs; that number will grow as greater attention is paid to FTD and its devastating impact on families.

For the last 20 years, the Association for Frontotemporal Degeneration (AFTD) has been working to spread FTD awareness, educate healthcare professionals, fund leading-edge FTD research, and improve the quality of life for families affected by this disease. We work every day to tell FTD stories like the Willis family’s — because every FTD story counts.

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