The Basics of FTD

Throughout the site, terms in bold print are defined in the Glossary.

Frontotemporal degeneration (FTD) refers to a group of brain diseases that affect the frontal and temporal lobes of the brain. These areas control skills that make us who we are – our personality, behaviors and how we communicate with others. FTD is a relatively rare disease that most people learn about when a family member or friend is diagnosed. FTD can be hard to understand. Knowing the facts about FTD can help you make sense of the changes you see and help you cope with the impact that FTD has on your family.

Our brain has different regions that control the functions of our body. The frontal lobe is in charge of our behavior, reasoning and decision making, problem-solving and emotional control. The temporal lobes control language and process information from the senses.

Someone with FTD may experience behavior and personality changes; they may develop difficulty speaking or understanding words, or they may have trouble with balance or walking. As the disease progresses it affects a person’s ability to work, enjoy family and friends and carry out daily activities.

It is hard to grasp that someone you love may have this disease, and the details and terminology can be confusing. This website will help you to learn the basics about FTD and hear how others have coped with the changes it brings.

What are the symptoms of FTD?

A person will experience different symptoms depending on the area of the brain that is affected by disease. A map of the brain can be found on the kids side of this website. This map shows the main regions of the brain and gives details on which thinking skills and activities each region controls. Click here to visit this interactive Brain Map.

There are several different frontotemporal degeneration disorders and the symptoms vary for each one. A doctor diagnoses a subtype of FTD based on the signs and symptoms that are most prominent during the first two years the person is ill.

There are three main areas of activity that are affected by FTD: behavior, speech and movement. Because the brain is complex and every person is different, the symptoms can vary greatly from one individual to the next. A person with FTD may experience changes mainly in one area, or could experience changes in all three. Some symptoms may be mild while others are more noticeable. FTD is also a progressive disease, which means that symptoms will change over time as the disease spreads to other areas of the brain.

Most people associate the term “dementia” with memory loss or Alzheimer’s disease. However, memory problems are not prominent in the beginning stages of FTD. Many people in the early stages of FTD can keep track of their day-to-day life and understand their surroundings. As the disease progresses, the symptoms will change and the person will need more assistance and care from others.

To read more about the different subtypes of FTD visit The Types of FTD.

Who gets FTD?

You may have heard of Alzheimer’s or Parkinson’s disease. Like these, FTD is a neurodegenerative disease, but it is much less common. While researchers don’t have very accurate numbers, they estimate that FTD affects 50,000 to 60,000 people in the United States, whereas Alzheimer’s disease is estimated to affect roughly 5 million people. Alzheimer’s disease most often affects people who are older than 60 years, whereas FTD typically starts when a person is in their mid-40s to early-60s. Equal numbers of men and women are affected by FTD.

What causes FTD?

FTD develops when normal proteins in the brain begin to build up in harmful ways. This causes cells to die, which results in atrophy or shrinkage of brain tissue, and makes it impossible for the brain to function properly. The exact cause of this process is unknown but doctors are learning more about the disease every day.

FTD is not contagious. It cannot be passed from one person to another through germs or blood. Most people who develop FTD have no family history of either FTD or other neurodegenerative disease.The majority of cases of FTD (60 to 70 percent) are considered “sporadic,” which means the disease does not run in the family and family members are at no higher risk of developing it than the general population.

There are some cases though where there is a history of neurological disease in the family. About 20 to 25 percent of those who develop FTD have some family history of a neurological disease such as FTD, Alzheimer’s disease, Parkinson’s disease or amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). In approximately 10 to 15 percent of FTD cases, a genetic mutation passed down in the family has been identified as the cause.

You may wonder what this means for you if you have a loved one with FTD. To learn more, click on the “The Genetics of FTD” icon at the bottom of this page.

How do doctors know if someone has FTD?

FTD is difficult to diagnose because the symptoms start gradually and can be similar to those of other illnesses. FTD is often misdiagnosed as depression, bipolar disorder, anxiety or Alzheimer’s disease. Diagnosing FTD is a complicated process that involves many steps and visits to different kinds of doctors, especially neurologists or psychiatrists. They understand how the brain works and can test for changes in thinking and behavior.

The doctors take a careful history and use tests and brain images (MRI or PET) to determine what areas of the brain are being affected. The results of these tests and images are used to rule out other possible causes for the changes and to help make an FTD diagnosis.

Improvements in brain imaging and other diagnostic tools are beginning to make it possible to diagnose FTD earlier. Identifying FTD “biomarkers” is an active and important area of research. Earlier diagnosis will help individuals and families know when FTD is responsible for changes in the person and enable them to plan for care.

Is there a cure?

There is currently no cure for FTD or treatment that can stop or reverse the damage caused by the disease. However, there are medications, lifestyle changes and specific caregiving techniques that can help reduce symptoms and improve the quality of life for your loved one.

Though no cure exists today, doctors, research centers and organizations are working hard to better understand FTD and actively conduct research and clinical trials to improve its diagnosis and treatment. Visit the page below to read more about FTD research.

What does this mean for my family and me? 

FTD is a difficult disease to understand. It causes the person to change in ways they cannot control. Some of the changes will be subtle, others will be obvious. They may not laugh or talk like they used to; they may not enjoy hobbies they once loved. Your loved one may have to stop going to work and may show less interest in you, other family members and friends. As the disease progresses, the person will need help with things that were once very easy for them. Over time they will become dependent on care for daily activities and you may no longer recognize the person you once knew and loved.

It may be difficult to understand that your loved one is sick with a disease they cannot control. You and your family will face emotional and day-to-day challenges for which no family can be fully prepared. It is important to remember that each person is doing the best they can in a very difficult situation. When your patience is short and your nerves are frayed, direct your anger at the disease that is causing the problems rather than at the person who is ill. Reminding yourself often that “This isn’t THEM, it’s the DISEASE,” can free you from having resentment and anger build up toward someone you love and help you to refocus on positive ways to cope.

It can feel as though everyone’s attention is on the person with FTD. You are an important member of the family and it is important for a family facing FTD to ensure that the health and well-being of each member is considered. You can help by learning to recognize what you need and what you can do to take care of yourself. There is a section of this website dedicated to Changes & Coping and includes examples of how other teens manage. Visit the various sections of this site often. The information and the experiences shared by others can be a vital resource for making it through this difficult time.

To learn more about the genetics of FTD and/or the research being conducted on FTD click on the icons below.

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