Frontotem­poral Dementia

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:

• Senses
• Emotions
• Language understanding
• Speech
• Memory
• Movement
• Judgment
• Decision-making
• Self-control and social skills

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:

• Amyotrophic lateral sclerosis (ALS)
• Parkinson’s disease
• Progressive supranuclear palsy
• Corticobasal degeneration

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:

• Using correct grammar and forming words, particularly complicated sentences
• Choosing words that make sense and understanding what others are saying

Diagnosing Frontotemporal Dementia at Cleveland Clinic

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.

What to expect at your first appointment

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:

• What kind of symptoms have you noticed?
• How long have you had these symptoms?
• How are your symptoms affecting daily life?
• Have you been diagnosed with any other medical conditions?
• What medical conditions run in your family?

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.

Other tests for frontotemporal dementia

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:

• CT scan
• MRI scan
• PET scan
• Lumbar puncture (spinal tap)
• Blood tests
• Electroencephalography (EEG)

Meet Our Frontotemporal Dementia Team

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:

• Neuropsychologists
• Neurorehabilitation specialists
• Physical therapists
• Occupational therapists
• Speech-language pathologists
• Social workers

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.

Living With Frontotemporal Dementia

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.

Taking the Next Step

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.