Frontotemporal dementia, or FTD, is in the spotlight this month, after the family of actor Bruce Willis announced that he had been diagnosed. Valley Neuropsychologist Lama Alameddine, PsyD, answered some common questions about FTD that you may be asking. Dr. Alameddine says dementia is an umbrella diagnosis that can include several different diseases, and many of them have different symptoms. She created the unique Cognitive Health and Memory Patients (CHAMP) clinic at Valley to better support patients with dementia and their families. Watch her video or read on below to learn more.
What is FTD?
Frontotemporal dementia actually defines a group of disorders and a neurodegenerative process, meaning that over time, this is a progressive disease that goes on to cause dementia. This form of dementia or process typically affects aging adults, but at a younger age. So the most common time of onset is between the ages of 40 to 65.
How does FTD compare/differ from other forms of dementia?
“What is dementia?” is often I think a good place to start. Dementia is a clinical diagnosis. It says the person who has this diagnosis is having cognitive decline to the point that it’s starting to impact their day-to-day functions or their activities of daily living. But the term dementia doesn’t tell you anything about the disease process that’s causing the cognitive declines.
With Alzheimer’s, which is the most common cause of dementia, typically you’re coming in with these memory complaints. Whereas in the group of disorders that are caused by frontotemporal degeneration, you can come in with behavioral changes, because the frontal lobe (the front of the brain) and the temporal lobe are what’s being impacted. And these parts of the brain are responsible for personality, behavior, many aspects of speech and language, and even motor functions at times. Hearing about Bruce Willis and that he was diagnosed with aphasia, the reality is that aphasia as a symptom, it tells us that there’s some disruption in language function. Typically, when people come in with those symptoms, we’re thinking of primary progressive aphasia, which is a diagnosis that is being caused by frontotemporal degeneration.
Bruce Willis was originally diagnosed with aphasia that progressed to FTD. How common is this?
It is common that aphasia or some language disruption is the first symptom. It’s typically mild and people can compensate for a while, so maybe they can’t pull the exact word out, but they’ll pull something synonymous, and then as the disease progresses, that becomes harder as well. And so you’re now speaking like, “I went there, and they were there and we did this,” and your vocabulary sort of shrinks, and it’s more basic as the disease progresses. Of course, it’s not just the language that gets impacted as the disease progressive progresses. Folks can go on to develop personality changes, can develop issues with insight, practical judgment and reasoning, logical thinking. Those parts of the brain, the frontal and the temporal lobe, they’re responsible for a lot of things. So as the brain cells die over time, you can get a multitude of symptoms that increase, including memory problems later.
What is the outlook or prognosis for someone diagnosed with dementia?
So many people live with a form of dementia for years, because physically, they’re healthy. It’s very rare that people die from dementia. It’s usually like pneumonia or some other process that comes, and as the brain deteriorates, our immune system may not function as well as it used to. So people can live with this for five years, 10 years, 20 years at times. But it does impact eventually your quality of life and the life of those around you. Your cognitive abilities are declining. So, over time, people will need help: help managing their medications; help with finances; even getting to and from appointments. The family becomes part of the identified patient group, because it’s a dynamic thing that impacts everybody surrounding it, and that’s a really important thing to consider too.
Is there any treatment for FTD or other forms of dementia?
The answer, unfortunately, is no, there is no treatment or cure for really any neurodegenerative process, not just FTD. But early detection is important. When patients come in and their symptoms are still mild, we want to exercise those functions that are struggling. So often folks come in and there’s language disruption, then we’ll refer to speech therapy. And that can be really helpful in preserving function and slowing down the progression of the disease. Any form of cognitive rehabilitation is also really helpful in slowing down the disease process. And then in general, in the research world, when we think about neurodegenerative processing, or just the aging process and in general, we find really great correlations between cardiovascular exercise and the health of your brain. So, you know, getting that heart pumping is going to slow down the progression of these diseases. Being socially engaged, so getting out, meeting with friends, engaging in activities, keeps the mind stimulated. So that’s also really good. And there’s a lot of research out there that also shows us how important our gut health is to our brain health. Having a good diet is always going to be helpful.
What care does Valley offer for patients with dementia?
We have a pretty comprehensive Neuroscience Institute at Valley Medical Center, and all of our providers do general work, but we all have subspecialties. We can do everything at Valley from a diagnostic workup, all the way to supporting family. I have been at Valley for almost seven years, and about five years ago, I saw this need in the community—what are we doing with folks who are living with a memory loss or a dementia process, besides getting a diagnostic workup and providing a diagnosis? That’s just the beginning.
I started a program at Valley called the Cognitive Health and Memory Patient Clinic, CHAMP for short. I wanted to keep it sort of light. These are folks that have usually been in the Valley system, they’re our patients, we know them well. They have some diagnosis of dementia or cognitive declin. And what do we do in this program? Now that we know the diagnosis, we ask who are your support systems, your caregivers? How do we support you? How do we provide appropriate education, guidance for future care planning, access to resources out in the communities so that you’re not isolated and you’re getting the supports that you need, as well as taking care of the family members and the folks that are doing this day-to-day, hands-on work. That’s a program that is unique to our clinic and has been helping patients and families living with various types of dementia now for about five years.
What should I do if I am or a loved one is exhibiting signs of dementia?
Talk to your primary care provider about what you’re seeing and ask about getting a referral to a neurologist. We always want to exclude other potential causes of cognitive changes. So we want to do lab work and make sure there’s no reversible causes of cognitive decline and take care of that if it’s there. We want to look at your brain. We want to scan it to make sure there’s no tumors, strokes, or any structural changes that can explain what’s going on. And then we also offer cognitive and neuropsychological evaluations and measure brain function. It tells us if there are deficits or declines and what areas of the brain that might be, and so that helps us understand the disease that could be causing the cognitive decline as well.
I know that sometimes it’s hard for patients to come in. They’re worried or scared. But I really do encourage people that even if you’re not sure and you think there’s a change, there’s nothing wrong with getting it checked and knowing ahead of time so that we can be preventive and help slow down the progression of things. We can also help the family wrap their mind around the changes that are coming. Of course, the earlier, the better, if possible.
What else should people know about dementia and FTD?
This is a really important discussion. The aging population and the health of the aging population and what that means to us as a community and as a society needs to be discussed more often than not.
You can learn more about FTD and Bruce Willis’s story here.
If you or a loved one are showing signs of dementia, we recommend you talk to your primary care provider first to see if you need neurological care. You can find a provider at valleymed.org/find-a-provider.