Frontotemporal Dementia is a type of Dementia that is less common than others. Frontotemporal Dementia, known as FTD or frontotemporal degeneration, is a group of disorders that are caused by nerve loss in the brain, primarily in the frontal or temporal lobes. This nerve loss is progressive as it becomes worse over time. Frontotemporal Dementia mostly affects the areas of the brain associated with personality, behavior, and language.
What is Frontotemporal Dementia?
Frontotemporal Dementia gets its name from the lobes in the brain that are damaged due to progressive nerve loss. These lobes include the frontal lobe and the temporal lobe.
The frontal lobes are located behind the forehead. This is the part of the brain that manages behavior, problem-solving, planning, and helps control and regulate emotions.
The temporal lobes are located on either side of the brain. This portion of your brain has several jobs. The left temporal lobe helps with the meaning of words as well as the names of different objects. The right temporal lobe enables you to recognize familiar objects as well as recognize faces.
Frontotemporal Dementia occurs when the nerve cells within these two lobes begin to die, and the brain’s pathways change. The chemical messengers that transmit information and signals between the nerve cells are lost during this process. As the cells die, the brain tissue in the frontal and temporal lobes shrink, causing further damage to the brain.
This leads to symptoms of Frontotemporal Dementia which include changes in your personality, behavior, and difficulty with language.
Frontotemporal Dementia is not a common type of Dementia. Many individuals may not have heard of it.
These symptoms are different from those you will typically see in Alzheimer’s patients or those living with Vascular Dementia.
Does Frontotemporal Dementia occur in younger individuals?
Although Frontotemporal Dementia is much less common than other forms of Dementia
Frontotemporal Dementia is the third most common form of Dementia in individuals living with Dementia under the age of 65. Some studies even indicate that it is the second most common form of Dementia affecting those in this age bracket. Both men and women are affected equally by this type of Dementia.
When is Frontotemporal Dementia Most Often Diagnosed?
Most often, those living with Frontotemporal Dementia are diagnosed between the ages of 45 and 65. With that being said, it can affect people younger than this as well as older than this. The peak window for diagnosis of Frontotemporal Dementia occurs much younger than other types of Dementia such as Alzheimer’s and Vascular Dementia.
Frontotemporal Dementia adds different challenges to individuals who are living with Dementia when they are diagnosed young. Most of these individuals are still working, have children that they are raising, and might not be in a financial position where they can stop working.
What Are the Most Common Types of Frontotemporal Dementia (FTD)?
The most common types of Frontotemporal Dementia are:
- Behavioral Variant. This type of Frontotemporal Dementia mainly affects behavior and personality.
- Primary Progressive Aphasia. These are two subtypes of this form of FTD. These both affect speech and language.
- Progressive non-fluent aphasia. This affects individuals living with Frontotemporal Dementia ability to speak.
- Semantic Dementia. Semantic Dementia affects your ability to use and understand language.
- A less common form of Frontotemporal Dementia affects movements. Symptoms of this type of Dementia are similar to Parkinson’s Disease.
What causes Frontotemporal Dementia?
Scientists are still trying to uncover why Frontotemporal Dementia occurs. Researchers have determined that some subtypes of Frontotemporal Dementia are caused due to mutations in several genes. Some individuals living with Frontotemporal Dementia have Pick bodies in their brain cells which are tiny structures. These Pick bodies have abnormal amounts of proteins.
Frontotemporal Dementia is more likely to run in families than other forms of Dementia. About ⅓ of people living with Frontotemporal Dementia have a family history of Dementia.
What are the Risk Factors of Frontotemporal Dementia?
Currently, family history is the only known risk factor for Frontotemporal Dementia. While some cases of Frontotemporal Dementia are inherited, most individuals living with Frontotemporal Dementia have no known history of it as well as no other types of Dementia.
What Are the Symptoms of Frontotemporal Dementia?
Symptoms of Frontotemporal Dementia vary depending on which parts of the frontal and temporal lobes are damaged. With most types of Dementia, symptoms are mild at first and progressively worsen as more damage is caused to the brain.
Behavioral Variant of Frontotemporal Dementia Symptoms
Two-thirds of the individuals living with Frontotemporal Dementia are diagnosed with the Behavioral Variant. The first symptoms seen in this variant are in individuals’ personality and behaviors. Symptoms may include:
- Lose their Inhibitions. Individuals living with Frontotemporal Dementia may behave inappropriately socially. This may include activating out or being impulsive. They may also make tactless or inappropriate comments about others and their appearances.
- Apathy. Those living with Frontotemporal Dementia may lose motivation in people and things. Note that those with Frontotemporal Dementia are not sad when this occurs.
- Loss of sympathy and empathy. Those living with Frontotemporal Dementia are not as responsive to others and their needs. They lose social interest, may show reduced humor, or laugh at other people’s problems. Often those living with Frontotemporal Dementia may appear to others as selfish.
- Have repetitive, compulsive, or ritualized behaviors. Individuals living with Frontotemporal Dementia may start to use repeated phrases or gestures. They may also tend to hoard things or become obsessive about timekeeping.
- Cravings. Those living with Frontotemporal Dementia may crave sweet, fatty foods, even carbs. They may lack table manners and may lack the ability to know when to stop eating or drinking alcohol.
- Struggle with planning, organizing, and making decisions. This will affect individuals’ ability to work and manage their finances as well.
Unlike those living with Alzheimer’s Disease, individuals living with Frontotemporal Dementia in the early stages of Dementia do not struggle with day-to-day memory or visuospatial skills.
More recent studies are beginning to show those living with Frontotemporal Dementia may have some symptoms linked with physical or environmental stimulation such as temperature, sound, or pain.
Most individuals living with Frontotemporal Dementia are not aware of their symptoms. More often, loved ones and close friends are the ones that point out signs of Frontotemporal Dementia to them.
Language Variants of Frontotemporal Dementia Symptoms
In both, Progressive non-fluent aphasia and Semantic Dementia, the first symptoms that are seen affect language and speech. These symptoms become more noticeable slowly, typically over a two or more year time period. Over time these progressively get worse and more recognizable.
Progressive Non-Fluent Aphasia
In progressive non-fluent aphasia, individuals will see symptoms and problems that affect the loss of language. Symptoms may include:
- Slow, hesitant speech. Those living with Frontotemporal Dementia may have slow or hesitant speech. These individuals may stutter or mispronounce words in an effort to find the right word to use.
- Grammatical errors. Those living with Frontotemporal Dementia may have “telegraphic speech.” They may find themselves leaving out words like ‘to’ ‘from’ or ‘the’ when speaking.
- Impaired understanding with sentences. Individuals living with progressive non-fluent aphasia may struggle to understand big complex sentences. However, they will have no trouble understanding single words.
Semantic Dementia
Those living with Semantic Dementia will continue to have fluent speech, but they begin to lack the vocabulary as well as their understanding of objects. Early symptoms of Semantic Dementia may include:
- Forgetting Meanings of Simple Objects. Those living with Semantic Dementia may forget the meaning of familiar words. These words can include things like bread, refrigerator, phones, and other everyday objects.
- Trouble Remembering the Right Word. Those living with Semantic Dementia may have trouble remembering or finding the right word to use in a sentence. This may lead them to describe the object instead. (For example, the thing that keeps things cold rather than calling it a refrigerator.) They may also not use the exact word and use a more general term. (For example, instead of dog, they may say animal.)
In the early stages of both Progressive Nonfluent Aphasia and Semantic Dementia, mental abilities such as memory, visuospatial skills, planning, or organizing tend not to be affected.
Symptoms of Late Stage Frontotemporal Dementia
As those living with Frontotemporal Dementia progress, the three types of FTD become less obvious. Individuals with Behavioral Variant FTD may develop language problems, and the disease progresses. They may eventually lose their speech like those that live with Language Variants FTD. Those living with Language Variant FTD may also develop behavioral problems as well.
In the later stages of Frontotemporal Dementia, the brain becomes more damaged. As this occurs, those living with Frontotemporal Dementia begin to see symptoms similar to those with Alzheimer’s Disease. It is common in late-stage Frontotemporal Dementia for those living with Dementia to no longer recognize friends and family and require full-time care.
Stages of Dementia
Frontotemporal Dementia is a progressive disease that worsens over time. It typically follows the seven progressive stages of Dementia. This is further broken down into early-stage Dementia, middle-stage Dementia, and late-stage Dementia.
What is the Life Expectancy of Individuals Living with Frontotemporal Dementia?
Those living with Frontotemporal Dementia progressively get worse at different rates, making it difficult to give a general life expectancy. On average, studies show that those living with Frontotemporal Dementia will live for six to eight more years once symptoms begin. However, the overall general life expectancy is anywhere from less than 2 years to 10 or more years.
Diagnosis of Frontotemporal Dementia
Frontotemporal Dementia is more challenging to diagnose than other forms of Dementia. It is more difficult because it is more uncommon than others, and it does not cause the same memory problems. Those living with the beginning stages of Frontotemporal Dementia do not see their healthcare provider early because they do not initially see problems with their behavior. Healthcare professionals may not immediately diagnose those with Frontotemporal Dementia because they are often middle-aged and do not suspect they have it.
For this reason, Frontotemporal Dementia is often misdiagnosed. It is common for healthcare professionals to diagnose it as Alzheimer’s Disease or even other things such as depression, schizophrenia, or OCD disorder. Language issues may be misdiagnosed as a stroke.
Healthcare providers need to order blood tests as well as conduct a physical examination to rule out other possible causes of the symptoms individuals are seeing.
Healthcare providers might perform the following to give a proper diagnosis of Frontotemporal Dementia.
- Blood Work (to rule out other causes)
- Physical Examination
- Detailed Medical History including symptoms
- Standard Tests or Mental Abilities
- CT scan or MRI
Tips to Visiting your Doctor
To get the most out of your visits with your doctor, these tips can help.
- Know the reason for your visit.
- Prior to the visit, write down any questions you have to remember to ask them.
- Bring someone with you to help you remember to ask your questions as well as help you remember the key points of the visit.
- Write down any new diagnosis, new medicines, treatments available, or tests.
- Understand why new medicines are prescribed as well as their side effects.
- Ask about other available treatment options.
- Understand current tests that are recommended and how they can help.
- Write down all follow-up appointments. Write the date, time, and the purpose of the visit.
- Get a care summary when leaving the office so you can remember all the key points of the visit.
- Know how you can contact your healthcare provider if you have any questions that come up prior to your next visit.
Treatment of Frontotemporal Dementia
There is currently no cure for Frontotemporal Dementia. Researchers continue to work to find a way to slow the progression of Frontotemporal Dementia as well. Currently, the best treatment remains helping those living with Frontotemporal Dementia live well by supporting them and finding ways to ease their symptoms. This may include prescribing medicines to treat symptoms or working with speech and language pathologists as well as physical and occupational therapists.
Living With Frontotemporal Dementia
Living with Frontotemporal Dementia can be embarrassing, scary, and frustrating not only for the individual living with Frontotemporal Dementia but also for the family as well.
If you have a loved one living with Frontotemporal Dementia, you need to recognize that some symptoms cannot be controlled. While it is hard to overlook certain behaviors, it is important to acknowledge that it is not them, but symptoms of the behavior. It is important not to get mad and to continue to show them respect and love even in difficult moments. If you have a loved one living with Frontotemporal Dementia, it is crucial to learn everything you can about Frontotemporal Dementia so that it can help everyone get through challenging times.
If you are the current caregiver, it is important to gather individuals to form a support team that can help your loved one with the medical, financial, and emotional challenges they are currently facing and will face in the future. In the early stages of Dementia, work with your loved one that is living with Frontotemporal Dementia to do advanced planning both financially and medically to ensure future decisions are easily made.
Are there complications of Frontotemporal Dementia?
Individuals living with Frontotemporal Dementia can live for years. It is not life-threatening, however, it can lead to an increased risk for other illnesses. Pneumonia is the most common cause of death among those living with Frontotemporal Dementia. Those living with Frontotemporal Dementia also have an increased risk of falling.
As symptoms progress for those living with Frontotemporal Dementia, they may begin to engage in activities or behaviors that make it too dangerous for them to live on their own, requiring them to have 24-hour nursing care or live in an assisted living facility.
What are the Differences Between Frontotemporal Dementia and Alzheimer’s Disease?
There are several differences between Frontotemporal Dementia and Alzheimer’s Disease.
- Age. Age is an important factor in the difference between FTD and Alzheimer’s. Most individuals living with Frontotemporal Dementia are diagnosed between 45 and 65 years of age. Alzheimer’s becomes more and more common as individuals age.
- Memory Loss. One of the first symptoms that are seen in those living with Alzheimer’s Disease is the loss of memory. This includes mental abilities such as memory, visuospatial skills, planning, or organizing, whereas Frontotemporal Dementia includes more characteristics of behavior and language.
- Behavior changes. Behavior changes are the first sign of Frontotemporal Dementia, whereas these develop much later in those living with Alzheimer’s.
- Hallucinations and delusions. Hallucinations and delusions are not typical in those living with Frontotemporal Dementia but may be more common in those living with Alzheimer’s Disease.
Do Doctors refer to Frontotemporal Dementia by other names?
Doctors will sometimes use other names for Frontotemporal Dementia. These include:
- FTD
- Pick’s Disease
- Frontal Dementia
- Frontotemporal lobar degeneration
- Behavioral Variant Frontotemporal Dementia
- Primary Progressive Aphasia
- Semantic Dementia
- Progressive non-fluent Aphasia
- Key Points of Frontotemporal Dementia
- Frontotemporal Dementia is a group of disorders that are caused by the loss of nerve cells in the frontal and temporal lobes of the brain.
- Family history is the only known risk factor.
- This is not a very common form of Dementia.
- Symptoms are usually seen between 45-64 years of age.
- Often, Frontotemporal Dementia is difficult to diagnose.
- Symptoms typically affect personality, speech, and behavior.
- There are currently no cure or treatments available, but medicines can help treat symptoms as well as working with speech and occupational therapists in your area.
- Eventually, those living with Frontotemporal Dementia may need full-time care or be placed in an assisted living facility.
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