Frontotemporal Dementia: What You Need to Know

By Beauty Adams
March 1, 2024

Frontotemporal dementia (FTD) is a group of brain disorders that affect the frontal and temporal lobes of the brain, which are responsible for personality, behavior, and language. FTD is different from other types of dementia, such as Alzheimer’s disease, because it usually affects younger people (between 40 and 65 years old) and causes more changes in behavior and language than in memory and thinking. FTD is also known as Pick’s disease, after the German neurologist who first described it in 1892.

In this blog post, we will explain what FTD is, what causes it, what are the symptoms, how it is diagnosed, and how it is treated. We will also answer some frequently asked questions (FAQs) about FTD and provide some resources for more information and support.

What causes FTD?

The exact cause of FTD is unknown, but researchers have found that it is linked to abnormal protein structures called Pick’s bodies that accumulate inside the brain cells and damage them. These proteins may be different in different subtypes of FTD, such as tau, TDP-43, or FUS. Some cases of FTD are inherited, meaning that they are caused by mutations in certain genes that are passed down from parents to children. However, most cases of FTD are sporadic, meaning that they occur randomly without a clear genetic cause.

What are the symptoms of FTD?

The symptoms of FTD vary depending on which part of the brain is affected and which subtype of FTD is present. However, some common symptoms include:

Behavioral changes: People with FTD may exhibit inappropriate, impulsive, or socially unacceptable behaviors, such as swearing, stealing, overeating, or neglecting personal hygiene. They may also lose empathy, judgment, inhibition, and interest in normal activities. They may become apathetic, emotionally indifferent, or aggressive.
Language problems: People with FTD may have difficulty speaking, understanding, reading, or writing. They may have trouble finding the right words, naming objects, or expressing themselves. They may also lose the meaning of words or use them incorrectly. They may have hesitant, telegraphic, or nonsensical speech.
Movement disorders: Some people with FTD may develop problems with movement, such as tremors, rigidity, muscle spasms, poor coordination, difficulty swallowing, or muscle weakness. These symptoms are similar to those of Parkinson’s disease or amyotrophic lateral sclerosis (ALS).

The symptoms of FTD usually start gradually and progress over time, sometimes rapidly. They may affect the person’s ability to work, socialize, and perform daily tasks. They may also cause emotional distress, frustration, and isolation for the person and their family and friends.

How is FTD diagnosed?

There is no specific test that can diagnose FTD. The diagnosis is based on the person’s medical history, physical examination, and neurological evaluation. The doctor may also use some tests to rule out other conditions that may have similar symptoms, such as:

Blood tests: To check for infections, vitamin deficiencies, thyroid problems, or liver or kidney diseases.
Neuropsychological tests: To assess the person’s memory, attention, language, and executive functions.
Brain imaging tests: To look for changes in the brain structure or function, such as shrinkage (atrophy) or reduced blood flow. These tests may include magnetic resonance imaging (MRI), computed tomography (CT) scan, positron emission tomography (PET) scan, or single-photon emission computed tomography (SPECT) scan.
Genetic tests: To identify any mutations in the genes that are associated with FTD, such as MAPT, GRN, or C9orf72. These tests are usually done only if there is a family history of FTD or if the person is younger than 60 years old.

The diagnosis of FTD may take time and may require multiple visits to different specialists, such as neurologists, psychiatrists, speech therapists, or genetic counselors. It is important to get an accurate diagnosis, as it can help the person and their family to understand the condition, plan for the future, and seek appropriate treatment and support.

How is FTD treated?

Unfortunately, there is no cure for FTD, and no medication that can stop or reverse the progression of the disease. However, some treatments may help to manage the symptoms and improve the quality of life of the person and their caregivers. These treatments may include:

Medication: Some drugs may help to reduce the behavioral problems, such as antidepressants, antipsychotics, or mood stabilizers. However, these drugs may have side effects or interactions, and they may not work for everyone. Therefore, they should be used with caution and under the supervision of a doctor.
Therapy: Some therapies may help to improve the communication and cognitive skills of the person, such as speech and language therapy, occupational therapy, or cognitive rehabilitation. These therapies may also provide strategies and tips to cope with the challenges of daily living.
Support: Some support services may help to provide emotional, social, and practical assistance to the person and their caregivers, such as counseling, support groups, respite care, or home care. These services may also offer information, education, and resources to help the person and their family to understand and deal with the disease.

FAQs about FTD

Here are some common questions and answers about FTD:

Q: How common is FTD?
A: FTD is estimated to affect about 50,000 to 60,000 people in the United States, and about 10% to 20% of all cases of dementia. FTD is more common in younger people than in older people, and it affects men and women equally.
Q: How long can a person live with FTD?
A: The life expectancy of a person with FTD varies depending on the subtype, the age of onset, the rate of progression, and the presence of other medical conditions. On average, a person with FTD may live for 6 to 10 years after the diagnosis, but some may live longer or shorter.
Q: Is FTD contagious?
A: No, FTD is not contagious. It is not caused by a virus, bacteria, or fungus that can be transmitted from one person to another. However, some cases of FTD are inherited, meaning that they are passed down from parents to children through genes.
Q: Is FTD preventable?
A: There is no known way to prevent FTD, as the cause is still unknown. However, some lifestyle factors may help to reduce the risk of developing dementia in general, such as eating a healthy diet, exercising regularly, staying mentally and socially active, avoiding smoking and excessive alcohol, and managing stress and chronic diseases.

How to cope with FTD

Living with FTD can be challenging and stressful for both the person and their caregivers. However, there are some ways to cope with the disease and make the best of the situation. Here are some tips:

Educate yourself: Learn as much as you can about FTD, its symptoms, its progression, and its treatment options. This can help you to understand what to expect, how to manage the symptoms, and how to plan for the future. You can also seek advice from experts, such as doctors, therapists, or counselors, who can provide guidance and support.
Seek support: You are not alone in this journey. There are many people who are going through the same or similar experiences, and who can offer emotional, social, and practical support. You can join a support group, either online or in person, where you can share your feelings, stories, and tips with other people who understand what you are going through. You can also reach out to your family, friends, or community, who can provide help, comfort, or companionship.
Take care of yourself: Caring for someone with FTD can be physically and mentally exhausting. It is important to take care of your own health and well-being, as well as the person’s. You can do this by eating a balanced diet, getting enough sleep, exercising regularly, and finding time to relax and enjoy yourself. You can also ask for help from others when you need it, and take breaks from caregiving when possible.
Be flexible and creative: FTD can cause unpredictable and changing behaviors and needs. You may have to adapt to new situations and challenges, and find new ways to communicate and interact with the person. You can try to be flexible and creative, and use humor, patience, and compassion. You can also focus on the positive aspects of the person, such as their strengths, abilities, and interests, and celebrate their achievements and milestones.

Conclusion

FTD is a complex and progressive brain disorder that affects the personality, behavior, and language of the person. It can cause significant changes and difficulties in the person’s life and their relationships with others. However, with proper diagnosis, treatment, and support, the person and their caregivers can cope with the disease and improve their quality of life. If you or someone you know has FTD, or if you have any questions or concerns about FTD, please contact your doctor or a health professional for more information and assistance. You can also visit the following websites for more resources and support: