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Imagine having trouble with not only speaking clearly to others, but understanding what they have to say to you. When you try to read, the words are jumbled up on the page or just don’t really make sense. When you try to write, you put words down on paper but they don’t look correct. It can be frustrating – and terrifying – to know something is going wrong but have no idea what it is, and you can’t communicate well enough to figure it out or explain to others what is happening to you.
Then other strange things begin to happen, such as muscle weakness that you can’t explain, or changes in behavior that shock everyone around you, and maybe even yourself.
That’s the journey some take with dementia.
In the spring of 2022, the family of Bruce Willis surprised the world when they announced the famous actor suffered from aphasia, a disorder that affected his ability to communicate. Aphasia explained his difficulties on movie sets and led to his retirement from Hollywood.
Last month, the family came forward again with a new diagnosis for the 67-year-old actor: frontotemporal dementia, also known as FTD.
In a statement released through the Association for Frontotemporal Degeneration, the family said, “Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that – if he could today -- he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families,” the statement read.1
So in honor of Bruce Willis, let’s talk about frontotemporal dementia, what it is, and what it means for those who are diagnosed.
What is Frontotemporal Dementia?
To understand what this disease it, we first must understand how the brain is built. When doctors talk about the brain, they usually divide into four quadrants, which are called lobes.
· The occipital lobe is at the back of the brain and contains the primary visual cortex. This is responsible for what you see.
· The parietal lobe is in the center of the brain and is responsible for helping you feel sensations, such as heat or pain. All your body’s senses are routed through this part of your brain.
· The frontal lobe houses the motor cortex, which helps with movement. It also houses the parts of the brain that handle emotion, language, reasoning, and high-level cognitive functioning.
· The temporal lobes, which are located at the sides of your head above your ears, are responsible for memory, emotion, hearing, and your ability to speak and understand language.2
This excellent guide to the parts of the brain from the University of Central Florida can provide you with more in-depth information.
Frontotemporal dementia is caused by progressive loss of the nerve cells in both the frontal lobe and temporal lobes. As the brain cells deteriorate, this type of dementia can cause a variety of problems with behavior, personality, and language.
When the frontal lobe is affected, mobility issues can result. As the motor cortex breaks down, the body undergoes a variety of changes, and some of those might happen well before a diagnosis is made. Muscle weakness, falling down for no apparent reason, tripping over things that were easy to clear just weeks ago – all of those things might become a part of day-to-day life.
An emergency response solution can help ensure that if you do suffer a fall or other issues that might be related to FTD or any other issue, you can reach out for help at a moment’s notice. And if you can’t communicate with the helpful agent at the monitoring center, that’s ok-- protocols are in place for sending help anyway.
How Does the Disease Progress?
There are several different types of FTD:
· Behavioral variant (bvFTD) results in significant changes in personality and behavior. It often begins in a person’s 50s and 60s but might hit as late as their 80s. The cells most affected are those that control judgment, empathy, foresight, and related abilities.
· Primary progressive aphasia (PPA) affects language skills, writing, comprehension, and speaking. It often occurs before the age of 65 but might occur late in life as well.
· There are three types of frontotemporal degeneration that affect the muscles or motor functions but don’t affect behavior or language. These include ALS, commonly known as Lou Gehrig’s disease; corticobasal syndrome, which makes a person stiff and uncoordinated; and progressive supranuclear palsy, which leads to symptoms that resemble Parkinson’s disease. These types often occur in mid-life.
The fact that Bruce Willis was first diagnosed with aphasia and later diagnosed with FTD this year isn’t surprising. Many individuals are given an inaccurate diagnosis at first; it takes well over three years, on average, for a definitive diagnosis of FTD. About 50,000 to 60,000 people have been diagnosed with FTD in the United States, but the actual number is probably much higher since doctors might not immediately associate the problems of FTD with dementia.3
How is FTD Different from Aphasia?
Bruce Willis was originally diagnosed with aphasia. To put it simply, aphasia is a disorder that makes it difficult to read, write, understand, or speak words. Primary Progressive Aphasia can develop due to the progression of some types of dementia, including frontotemporal dementia.4
The difference is that aphasia is limited to issues with speech and language, while FTD includes not only the aphasia difficulties, but physical and behavioral problems as well. How bad these become and how quickly they progress depends greatly upon the individual.
Who Is at Risk?
In about a third of all cases, FTD is inherited. But beyond that, there are no clear risk factors that seem to lead to the disease. Those who have a relative with FTD can get genetic testing to help determine if they are more susceptible to developing this form of dementia.
When FTD strikes, it usually happens to those between the ages of 40 and 60. The first signs often include problems with speech and understanding language. There could also be antisocial or unusual behavior that begins to occur with more frequency. Though dementia is usually associated with a loss of memory, those with FTD usually have intact memories until the later stages of the disease, which can help differentiate frontotemporal dementia from Alzheimer’s.
If you believe you are at risk for FTD, it’s a good idea to talk with your doctor about the symptoms you are feeling. It’s also a great idea to wear a medical alert pendant or necklace around the clock, just in case you suffer a fall, accident, or other emergency.
When you start to notice troubling symptoms, you need to find peace of mind wherever you can; that often means taking whatever precautions are possible to stay safe and secure. In addition to looking into medical alert technology, it’s also a great time to begin implementing aging in place solutions that can make life easier for you in the future, no matter what sort of diagnosis you might receive.
Are there Treatments?
Unfortunately, there are no specific treatments for this type of dementia. The situation will get worse over time, and the decline is different from one person to another. Just as with other types of dementia, one part of the brain might be affected more than others; for Willis, obviously the areas that control speech are deeply affected. Over time, problems with coordination and muscle weakness might show up as well.
Though there is no medication to treat the dementia, there are many medications available to treat some of the symptoms. For instance, depression and irritability can accompany the dementia; there are many medications a person can try that will alleviate those issues. The goal is to improve quality of life.5
In addition to medications, other therapies might be introduced. The healthcare team might include speech therapists, occupational therapists, social workers, neurologists, psychiatrists, and other specialists who can work with the patient to figure out the best way to improve their quality of life as the disease progresses. The support of family and friends can help make a person more comfortable.
Those diagnosed with FTD tend to get that diagnosis nine years after the first symptoms appear. But their life expectancy is for only five years after diagnosis, since it often takes so long to get an accurate picture of what is really happening to them.6
If you are a caregiver for someone with FTD, watching their decline can be devastating. It will become quite important to do everything you can to not only protect your loved one but to take care of your own mental and physical health as well.
To that end, make safety and security a family affair. Turning to senior life-saving alert systems can make a difficult road a bit easier by ensuring your loved one can call for help whenever they need it – and even if they can’t communicate with the person on the other end of the line, they can still get the help they need. This is especially true if you opt for a medical alert system with fall detection, as the fall sensors in the device can detect a fall and alert the monitoring center of a problem without the need to actually press the medical alarm button at all. Let a medical alert system be your safety companion on this difficult journey.