Frontotemporal dementia is caused by a group of disorders that gradually damage the brain’s frontal and temporal lobes. These damages cause changes in thinking and behaviors. Symptoms can include unusual behaviors, emotional problems, trouble communicating, challenges with work, and difficulty with walking.
Frontotemporal dementia (FTD), sometimes called frontotemporal disorders, is rare and tends to occur at a younger age than other dementias. About 60% of people with frontotemporal dementia are 45 to 64 years old.
FTD is progressive, meaning symptoms get worse over time. Some people live more than 10 years after diagnosis, while others live less than two years after they are diagnosed. High levels of care, such as 24-hour care, may be needed over time. Once the person is diagnosed, it is important to plan ahead for financial, legal, and care arrangements that may be needed as the disease progresses.
What Are the Types of Frontotemporal Dementia?
There are several disorders that can result in frontotemporal dementia, all of which can affect middle-aged and older adults.
- Behavioral variant frontotemporal dementia (bvFTD) is the most common frontotemporal disorder. It causes changes in personality, behavior, emotions, and judgment.
- Primary progressive aphasia (PPA) involves changes in the ability to communicate — to speak, read, write, and understand what others are saying.
- Movement disorders happen when the parts of the brain that control movement are affected. There are two types of rare movement disorders associated with FTD: corticobasal syndrome and progressive supranuclear palsy. Other movement-related disorders include frontotemporal dementia with parkinsonism and frontotemporal dementia with amyotrophic lateral sclerosis (FTD-ALS). Symptoms can vary among these movement disorders.
What Causes Frontotemporal Dementia?
The underlying causes of frontotemporal dementia are not yet fully understood. People with FTD have abnormal amounts or forms of proteins called tau and TDP-43 inside nerve cells, or neurons, in their brain. The neurons die because the buildup of these proteins causes damage. In some cases, mutations or changes in genes can be identified as the cause of FTD. For example, about 10% to 30% of bvFTD cases can be attributed to genetic causes. People with a family history of FTD are more likely to have a genetic form of the disease.
Be a Part of Finding Better Treatments
Do you or a family member have frontotemporal dementia? Researchers are looking for people like you to participate in a study to track disease progression and advance treatments — the ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Research Consortium.
What Are the Signs and Symptoms of Frontotemporal Dementia?
The signs and symptoms of frontotemporal dementia vary from person to person and the order in which they appear can also vary. Changes in the frontal lobe of the brain are generally associated with behavioral symptoms and may also lead to movement symptoms. Changes in the temporal lobe generally lead to disorders of language and emotion.
Symptoms of frontotemporal dementia and associated disorders may include:
- Decreased energy and motivation
- Lack of interest in others
- Inappropriate and impulsive behaviors
- Not acting considerate of others
- Repeating an activity or word over and over again
- Changes in food preferences and compulsive eating
- Increased interest in sex
- Neglect of personal hygiene
- Emotional flatness or excessive emotions
- Difficulty making or understanding speech
- Inability to make common motions, such as using a fork
- Problems with balance and walking
- Increased clumsiness
- Slow movement, falling, body stiffness
- Restricted eye movements
- Shaky hands
- Muscle weakness and loss, fine jerks, wiggling in muscles
Frontotemporal Disorders: Information for Patients
This booklet provides an overview of frontotemporal dementia, primary progressive aphasia, and related movement disorders.
How Is Frontotemporal Dementia Diagnosed and Treated?
Frontotemporal dementia can be hard to diagnose because symptoms are similar to other conditions. Also, because these disorders are rare, physicians may be unfamiliar with the signs and symptoms.
Talking with patients, family members, and caregivers can help doctors make a diagnosis. It is important to tell the doctor about any symptoms involving changes in personality and behavior and difficulties with speech or movement.
To diagnose frontotemporal dementia, a doctor may perform an exam and ask about symptoms, look at personal and family medical history, use tests to help rule out other conditions, order genetic testing, conduct an assessment of the mind and behavior, and order imaging of the brain. Only genetic tests in familial cases or a brain autopsy after a person dies can confirm a diagnosis of frontotemporal dementia. Researchers are studying ways to diagnose the disorders earlier and more accurately and to distinguish them from other types of dementia.
There is no cure for frontotemporal dementia and no way to slow down or prevent it. However, there are ways to help manage symptoms:
- Maintain a schedule, decrease distractions, and change the environment to help with behavioral issues. For example, if compulsive eating is an issue, consider limiting food choices, locking cabinets and the refrigerator, and distracting the person with other activities.
- Try to recognize it’s the illness “talking” and accept rather than challenge people with behavioral symptoms. Arguing or reasoning will not help because they cannot control their behaviors or even see that they are unusual or upsetting to others.
- Limit choices and offer specific choices, such as “Do you want to go to the park or for a walk?” rather than, “What do you want to do today?”
- If you become frustrated, take a timeout — take deep breaths, count to 10, or leave the room for a few minutes.
- To help with language issues, speak slowly and clearly, use simple sentences, wait for responses, and ask for clarification if you don’t understand something. An album of labeled photos of people and objects, gestures, and drawing may help communicate without talking. A speech-language pathologist can determine the best tools and strategies for a particular person.
Medications, such as antidepressants and antipsychotics, may help treat certain behavioral symptoms. There are also medications that may help with movement problems, and physical and occupational therapy may provide some relief. Contact an academic medical center in your community to find a specialist and learn more about possible treatments. Visit the National Institute on Aging for a list of medical centers where people with frontotemporal dementia and associated disorders can be diagnosed and treated.
Support groups can also be a valuable resource for people with frontotemporal dementias and their caregivers, allowing them to share experiences and tips with others who may be in the same situation. Nonprofit organizations and community organizations may provide online or in-person support groups. Alzheimer’s Disease Research Centers may also offer education and support groups.
What Can You Do?
If you have a family history or are concerned about symptoms of frontotemporal dementia, talk with your doctor. If you or someone you know has recently been diagnosed, explore the resources on this website and linked below to find out more about the disease, care, support, and research.
You could help discover new ways to treat and prevent Alzheimer’s and related dementias.