You thought dementia only happened to people in their 70s or 80s. You’re not there yet, but you just got that shocking diagnosis. So, what happens next?
Learning you have dementia isn’t what you expected. And you probably have a lot of questions running through your mind. It’s important to understand there are many kinds of dementia. Frontotemporal dementia (FTD) is one of them (and includes Pick’s disease.) And it often affects people in their 50s and early 60s. FTD starts when parts of your brain start breaking down. This can affect how you act and speak. It can also make it hard to understand what someone is saying to you.
These changes can be very unsettling. Cleveland Clinic’s expert team is here to help you better understand what’s going on. We’ll work with you and your loved ones to build a personalized plan to help you manage your condition. And we’ll make sure you get the compassionate support you deserve as you begin this unexpected journey.
No two brains are alike. And no two people experience dementia in the same way. When you come to Cleveland Clinic for care, we build your treatment around your specific test results and diagnosis. We keep you and your needs at the center of all we do. Meet our team.
Cleveland Clinic’s brain health team provides expert diagnosis and caring treatment for you and your family after a frontotemporal dementia diagnosis. We help you manage your condition and provide a strong support system for you and your loved ones so you can better understand what the future may bring.
Frontotemporal dementia affects you mentally, physically and emotionally — and may affect your speech. That’s why we make sure you get the care you need from the providers best suited to your needs. You may see experts in neurology, neurorehabilitation, psychology, speech therapy and more. We make sure we take care of the whole you.
Cleveland Clinic is dedicated to understanding brain health and conditions like frontotemporal dementia. Our providers take part in research studies and clinical trials to try new treatments, preventive approaches and testing tools. You may even qualify for a study. Ask your provider for more information.
Not all appointments with your provider need to be in person. Virtual visits let you touch base with each other quickly. You’ll still get the same great one-on-one care — but from the comfort of home.
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Finding out you have dementia isn’t the news anyone wants to get — at any point in life. But it may completely blindside you if you’re in your 50s or 60s. Many people may not know that frontotemporal dementia often starts when you’re in your 50s well into your 80s — with an average age of 58.
This type of dementia affects two areas of your brain in its early and middle stages — the frontal and temporal lobes. Together, these areas work to control things like your:
Frontotemporal dementia can affect any of these areas. It may start from changes in your cells. These changes can sometimes be passed down (inherited) in families. Things like past head injuries and thyroid problems can trigger FTD. Other times, FTD symptoms can occur in people with:
No two people experience this condition the same, but there are common signs. Early on, you may have mild cognitive impairment and start losing executive function. This is your ability to plan, solve problems, organize and feel motivated. You may not have any other signs beyond this — at least at first.
Frontotemporal dementia is long-term and progressive. Your symptoms will grow more noticeable with time. You may start forgetting important dates or people’s names. You could stop having empathy. You might lose your sense of inhibition and personal space — and not respect other people’s space.
You may start having new compulsive behaviors. Things like reckless spending, gambling or even shoplifting can be signs of FTD. So can repetitive movements or saying the same things over and over.
Frontotemporal dementia can also affect your speech. You may have a related condition called primary progressive aphasia (PPA). With PPA, you may have problems with:
It can be upsetting for you and your loved ones as you notice your symptoms. If things aren’t the same as they used to be, it’s time to get things checked out. FTD isn’t a condition you can easily diagnose — or manage — on your own. Our team is here to help.
Your first visit helps your provider get to know you and understand your story. Hearing you share how you’ve been feeling is an important step in how they confirm a diagnosis. They may ask questions like:
Your provider will also do physical and neurological exams to look for symptoms. You may also do a cognitive test. Your provider will ask you questions and have you complete tasks. Based on how you do, it can help them learn what areas of your brain might not work correctly. They may also do neuropsychological testing.
It’s often helpful and comforting to bring a friend or loved one with you to your appointments to listen, take notes and ask questions. So, don’t hesitate to ask someone you trust to come with you whenever you’d like.
Our team may order other tests to better understand what’s happening in your brain. These tests can also help them rule out other conditions than can have similar symptoms. You may have:
Dementia can affect different parts of your body. So, when you come to Cleveland Clinic, we personalize your care team of providers from the specialties you need. Our experienced neurologists will lead your team, but you may also see nurse practitioners, physician assistants and:
Our healthcare providers see patients at convenient locations throughout Northeast Ohio, and Las Vegas, Nevada.
No FTD treatment plans are the same because this condition affects everyone differently. Your care team will work with you and your loved ones to find the best ways to manage your progressive symptoms. We’ll talk with you about therapies we believe could help how you feel and live.
Early on, we may suggest ways to manage thinking and memory problems. As things progress, we may have you work with our neuropsychology team. These experienced providers can help you with any new behaviors and fears.
You may also need physical and occupational therapy to help you walk, move and do everyday things. And if you struggle to speak clearly or understand what people are saying, you may do speech therapy. This can also help with swallowing problems (dysphagia) that may start up as FTD progresses.
When you first get a frontotemporal dementia diagnosis, you may wonder if it’s true. You don’t feel all that different than usual — other than getting more disorganized and forgetting some dates and words. This condition keeps progressing — meaning that your brain will continue to break down. That’s why we suggest getting things checked out early. Knowing what’s going on sooner rather than later gives you the opportunity to talk with your loved ones about your future. Early communication is important.
We understand you may feel nervous telling your friends and family about your diagnosis. It can be a hard conversation to have, but it’s an important one.
It can be frustrating when you forget things more than you used to. You might also find it harder to find the right words and understand what people are saying. Even so, you may be worried about taking the next step — confirming what’s going on. But finding out what’s happening as soon as possible is important. Our team will help you and your family through all stages of frontotemporal dementia from the moment you’re diagnosed. You don’t have to go through any of this alone. We’ll listen to your concerns and answer your questions. And we’ll build a care plan that covers your needs now and looks toward a changing future.
We’ll help you make an appointment with a frontotemporal dementia expert and gather information for a successful visit.
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