Frontotemporal dementia (FTD) refers to a group of neurodegenerative brain disorders caused by nerve cell damage. The damage occurs in the brain's frontal lobes (behind the forehead) and temporal lobes (behind the ears). It can cause changes in personality, behavior, and communication skills.
UPMC neurology experts provide advanced care for people with FTD, including medications and lifestyle changes to help manage symptoms.
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What Is FTD?
FTDis the name for a group of brain disorders that cause problems with language and behavior. FTDis distinct from other types of dementia, including Alzheimer's disease.
FTD was formerly called Pick's disease.
What are the types of FTD?
There are three main types of FTD, including:
- Behavior variant FTD (bvFTD) — The most common type, bvFTD causes people to experience personality changes, act inappropriately, or become withdrawn. However, the ability to remember people and events often remains unaffected.
- Primary progressive aphasia (PPA) — There are two forms of this brain disorder, semantic variant PPA (svPPA) and non‑fluent/agrammatic PPA (nfvPPA), that slowly affect language. Both cause language skills to decline over time, but in different ways. People with svPPA gradually lose the meaning of words, while people with nfvPPA have slow, effortful speech and difficulty putting sentences together due to problems with speech planning.
- Disturbances of motor function — These happen when nerve cell damage occurs to the parts of the brain that control movement. This damage may cause problems with walking, balance, and fine motor skills, as well as memory and behavioral issues. These types of FTD include FTD with Parkinsonism and FTD-ALS.
What are the stages of FTD?
The level of cognitive impairment is based on the extent to which it affects a person's functioning.
FTD is categorized, in order of severity, as:
- Mild cognitive impairment.
- Mild stage of dementia.
- Moderate stage of dementia.
- Severe stage of dementia.
FTD usual follows this progression:
Stage 1 — Mild thinking changes
- Small but noticeable changes in thinking.
- Occasional memory problems and trouble focusing.
- Daily activities are mostly unaffected.
Stage 2 — Changes in behavior and thinking skills
- Behavior changes become more noticeable, such as acting impulsively or losing motivation.
- Reduced ability to solve problems and make decisions.
- Early difficulties at school, work, or in social situations.
Stage 3 — Language difficulties
- Increasing problems with speech and communication.
- Difficulty finding the right words or clearly expressing ideas.
- Trouble understanding more complex information.
Stage 4 — Effects on quality of life
- Daily activities and independence become harder.
- Problems organizing, planning, and completing tasks.
- Difficulty adjusting to changes or new situations.
Stage 5 — Personality changes and mood swings
- Major changes in personality and behavior.
- Frequent mood changes, including irritability or emotional withdrawal.
- Greater social and emotional challenges.
Stage 6 — Worsening memory loss
- Severe memory problems, including difficulty recognizing familiar people or places.
- Limited ability to remember recent events or conversations.
- Increased dependence on reminders and help with daily tasks.
Stage 7 — Severe cognitive decline and physical health issues
- Serious decline in thinking and daily functioning.
- Loss of the ability to speak and swallow.
- Declining physical health, including movement problems and a higher risk of infections.
How does FTD differ from Alzheimer’s disease?
Although FTDand Alzheimer's are types of dementia that share some of the same symptoms (personality and behavior changes), they're distinct conditions.
Here are a few differences:
- Behavior changes are usually the earliest signs of bvFTD, the most common type of FTD. While behavior changes can also occur in Alzheimer’s disease, they typically appear later in the progression.
- People with FTD are younger — Most people diagnosed with FTDare in their 40s to 60s. People with the most common form of Alzheimer's (late-onset) are mostly over 65.
- Problems with speech and reading are more common in FTD — While people with Alzheimer's often struggle with coming up with the right word or name.
How common is FTD?
FTD isn't as common as other types of dementia. According to the Alzheimer’s Association, there may be about 50,000 to 60,000 people with bvFTD and PPA in the U.S.
What causes FTD?
Doctors believe that FTDoccurs when certain proteins (tau and TDP-43) build up around the frontal and temporal lobes of the brain.
The frontal lobes of the brain help control:
- Conduct
- Foresight
- Judgment
- Social responses
The temporal lobes are the language center of the brain and help with:
- Emotions
- Memory
- Reading
- Speaking
- Writing
Tau and TDP-43 proteins occur naturally and help with cell function in a healthy person. Researchers don't know why the proteins build up in someone with FTD.
FTD risk factors
For most people with FTD, the cause of the disease is unknown. However, you may be at higher risk if you have a family history of the disease. Between 10 and 30 percent of bvFTDcases are genetic.
Those with a family history of FTD may want to get genetic counseling and testing to better understand their risk of developing the condition and passing it on to their biological children.
You may also be at higher risk for FTD if you have a history of traumatic brain injury.
Complications of FTD
Complications of FTDinclude:
- Balance problems.
- Infections.
- Injury from falls and accidents.
- Pneumonia.
- Problems interacting with others (including trouble with social cues).
- Trouble swallowing.
How can I prevent FTD?
There is nothing you can do to prevent FTD. However, research has shown that lifestyle changes may reduce your overall dementia risk or slow the progression of dementia after diagnosis.
Your doctor may recommend:
- Eating a healthy diet, including avoiding processed and sugary foods.
- Maintaining a healthy weight.
- Managing chronic health conditions.
- Getting regular exercise.
- Socializing with others.
- Treating hearing loss.
What Are the Signs and Symptoms of FTD?
Unlike Alzheimer's disease, memory loss is not one of the first symptoms of FTD. Some people with FTD may experience memory loss as the disease progresses.
Symptoms of FTD may include social, language, and physical problems.
Social symptoms
People with FTDmay:
- Change their eating habits, including binge eating and eating non-food items.
- Develop odd social behaviors, such as touching strangers, making rude or offensive comments, or becoming belligerent.
- Engage in ritualistic or compulsive behavior.
- Lack empathy for others.
- Neglect their hygiene.
- Start hoarding items.
Language symptoms
As FTDget worse, language issues become more common, such as:
- Not being able to speak.
- Repeating a word over and over.
- Difficulty recalling the names of familiar objects.
- Not understanding common words they knew before.
- Problems with grammar, such as leaving words out of sentences.
Personality symptoms
People with FTD may experience personality changes, such as:
- Emotional flatness or being overly emotional.
- Heightened interest in sex.
When should I see a doctor about my FTD symptoms?
If you have symptoms of FTD or any type of dementia, you should schedule an appointment with your doctor right away. Your doctor may refer you to a neurologist who specializes in diagnosing and managing different types of dementia.
How Do You Diagnose FTD?
It's crucial to have an expert diagnosis for any type of dementia. Diagnosing FTDis complex because symptoms may be similar to other types of dementia. Sometimes, a person will have more than one type of dementia at a time (mixed dementia).
To diagnose FTD, your doctor will perform physical and neurological examinations and review your symptoms and medical history. Your doctor may also order tests to confirm your diagnosis or rule out other problems.
What to expect during your visit
During your visit, your doctor will:
- Ask you about your symptoms.
- Order tests.
- Perform a physical and neurological exam.
- Review your medical history.
Tests to diagnose FTD
There's no conclusive test to diagnose FTD. However, your doctor may order tests to provide information or rule out other problems, including:
- Blood tests — Checks for abnormalities and rules out other conditions.
- Cerebral spinal fluid analysis (spinal tap or lumbar puncture) — Involves inserting a needle into your lower back to collect a sample of cerebrospinal fluid (CSF) for analysis in a lab.
- Magnetic resonance imaging (MRI) — Creates images of your brain using contrast dye to look for damaged or abnormal areas.
- Neurological examination — A noninvasive test to check your reflexes, balance, movement, memory, and ability to think.
- Neuropsychological examination — Checks your ability to think, reason, and remember.
FTD prognosis
FTD is a progressive disease that gets worse over time and may eventually cause a loss of independence. Your prognosis after FTD diagnosis depends on how quickly your condition progresses, your overall health, and other factors.
What is the life expectancy of someone with FTD?
FTDsymptoms will get worse over time. The average life span for someone with FTDis 7-13 years after the start of symptoms.
However, many factors affect life expectancy. Some people with FTD may live 20 years after the onset of the disease.
What is the cause of death in people with FTD?
Infection and pneumonia are common in the late stages of the disease and can often result in death.
How Do You Treat FTD?
There's no cure for FTD. But you can manage some symptoms of the disease and improve your quality of life.
Doctors may recommend FTD treatments including:
Lifestyle changes
Lifestyle changes may help to reduce FTD symptoms.
Your doctor may recommend:
- Increasing daytime exercise to improve sleep at night.
- Avoiding long naps.
- Staying away from caffeine and alcohol.
- Going to physical therapy to help with movement and balance problems.
Other FTD treatments
Other treatments for FTD may include:
- Managing behavior — Limit food choices, stick to a schedule, and keep a calm environment.
- Medication — Antidepressants and antipsychotic drugs may improve FTD symptoms.
- Physical and occupational therapy — Physical therapy exercises can help with movement and balance, and occupational therapy can help maintain independence in performing everyday tasks.
- Speech and language therapy — In the early stages of FTD, a speech therapist may be able to help with communication skills.
Why Choose UPMC for FTD Care?
When you choose UPMC for FTD care, you will receive:
- Multidisciplinary care — Our team of dementia experts will work with you and your loved ones to develop a customized treatment plan that optimizes your quality of life and reduces your risk of complications.
- Access to advanced clinical trials — Our team participates in national, multicenter clinical trials evaluating new treatment options, giving you the opportunity to contribute to research advancing dementia care.
- Seamless, ongoing treatment — If you are diagnosed with FTD, our team will develop a plan for your follow-up care, including ongoing symptom management and long-term care planning, as needed.
