Written by: Sam van Kalkeren, MSN, RN, CDP, CADDCT
Frontotemporal dementia (FTD) is one of over 100 forms of dementia. Alzheimer’s is the most well-known form of dementia. FTD is the fourth most common form of dementia, following Alzheimer’s, Vascular dementia, and Lewy body dementia. FTD is also known as Pick’s disease.
Bruce Willis and frontotemporal dementia in the news
In March 2022, Bruce Willis retired from acting due to a speaking disorder known as aphasia. Aphasia is a language disorder that affects a person’s ability to communicate. Since then, it was announced that he was diagnosed with Frontotemporal dementia. So how does someone go from having a speaking disorder to FTD in less than a year? The answer lies in the diagnosis of Frontotemporal Dementia.
To best understand any form of dementia, it is easiest to think of the symptoms resulting from brain failure. The brain is failing. Therefore, all the functions it is responsible for are disrupted. FTD begins with degeneration of the front and side lobes of the brain. The degeneration is slow and progressive, causing changes in behaviors and the ability to process language. That is because the front and side lobes of the brain are responsible for processing language, controlling behavior, and the ability to plan and organize.
The cause of FTD is unknown, but FTD manifests due to damaged brain cells in the front and side lobes of the brain. In some individuals, protein deposits develop in the frontal lobes. As the protein deposits spread, brain cells are damaged. Genetics can play a role in who is at risk for FTD. One-third of FTD diagnoses are caused by genetics. The remaining two-thirds have nothing to do with genetics. It affects both women and men equally. It is estimated that about 60,000 Americans are diagnosed with FTD, but the number would be much higher if there were more accurate tests.
There is no single test that can diagnose FTD. Bloodwork and other diagnostic tests should be completed to rule out any other disease that could cause similar symptoms. Diagnostic tests may include neurological exams, MRIs or CT scans of the brain, genetic testing, psychiatric evaluation, and spinal taps. An accurate diagnosis of FTD can only be obtained through genetic testing when there is a family history of FTD or through a brain autopsy after the person dies.
Everyone will experience FTD differently, and not everyone will experience the same symptoms. Symptoms of FTD include:
• Behavioral changes
• Change in eating habits
• Decrease in personal hygiene
• Decreased self-awareness
• Difficulty speaking
• Impaired judgment
• Impulsive behavior and uninhibited
• Inability to use or understand language, misuse of words
• Irritability and mood changes
• Lack of compassion and empathy
• Socially inappropriate
• Trouble organizing and planning
Once a person is diagnosed, the family needs to make the most of the time they have left with their loved one. The average life expectancy of someone diagnosed with FTD is 7-13 years after symptoms start. The most common cause of death is pneumonia. Address future concerns early on, including financial decisions. Create a Living Will and appoint a Power of Attorney. Proactive and in-depth planning can help protect the assets and well-being of the individual diagnosed with FTD and their family.
Find an organization, like O’Connor Professional Group, that can help your family navigate this new diagnosis and the challenges that come with it with concierge aging services. O’Connor Professional Group can educate your family on what to expect as the disease progresses and support them so they can focus on the precious time left with your loved one.
Beller, J. (2022). 2022 dementia overview 19 dementia types, symptoms, & risk factors. Jerry Bellar Health Research Institute.
Johns Hopkins Medicine (2023). Frontotemporal dementia. Retrieved from https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/frontotemporal-dementia
National Institute on Aging (2021, July 30). What are frontotemporal disorders? Causes, symptoms, and treatment. Retrieved from https://www.nia.nih.gov/health/what-are-frontotemporal-disorders#typesandsymptoms
Watch this webinar: Dementia is not a Diagnosis: The Truth About Dementia