A Complete Guide to Frontotemporal Dementia: What You Need to Know

Frontotemporal Dementia

Today, an estimated 250,000 Americans are living with frontotemporal dementia. In fact, frontotemporal dementia is the most common cause of dementia among those under 60. To put this into perspective, this type of dementia affects as many people as Alzheimer's in the age group spanning from 45-64. 

Previously known as Pick's disease after Arnold Pick, M.D. — a practitioner who initially described a patient with symptoms affecting language back in 1892 — frontotemporal dementia may also be referred to as frontal lobe disorders, frontotemporal degenerations, and frontotemporal disorders. No matter the moniker used to describe the condition, it can affect an individual's:

  • Behavior
  • Language
  • Movement
  • Personality

If you or a loved one live with frontotemporal dementia the Long Island Alzheimer's and Dementia (LIAD) Center offers innovative programming, caregiver support groups, and other services designed to help improve quality of life. But first, let's take a closer look at frontotemporal dementia to learn more.

What Is Frontotemporal Dementia?

Frontotemporal dementia is a relatively broad term used to describe a group of uncommon brain disorders. As the name suggests, this group of disorders impacts the brain's:

  • The areas behind your forehead or frontal lobes, or
  • The areas behind the ears, which are called temporal lobes. 

Together the frontal and temporal lobes are the areas of the brain associated with language, behavior, movement, and personality. Frontotemporal dementia is the result of damaged nerve cells in the temporal and frontal lobes. Once damaged, the nerve cells shrink (atrophy). 

The symptoms and signs of the disease can vary depending on which part of the brain is impacted. Although some may lose the ability to properly speak, others may experience significant changes in their personality and withdraw. 

Far too often, frontotemporal dementia is misdiagnosed as Alzheimer's disease or as a psychiatric problem. However, frontotemporal dementia tends to have a younger onset age than Alzheimer's disease. In fact, frontotemporal dementia symptoms will typically begin between the ages of 40 and 65

Types of Frontotemporal Dementia

There are two primary types and a third rarer form of frontotemporal dementia:

  1. Frontal or behavioral variant frontotemporal dementia (bvFTD) typically impacts an individual's behavior and personality. This type involves nerve cell loss in the areas responsible for empathy, conduct, control, judgment, foresight, and other abilities. 
  2. Primary progressive aphasia (PPA) can impact an individual's speech centers, affecting ability to write, speak, and comprehend. This type of frontotemporal dementia can be segmented into two subtypes:
    • Semantic PPA dementia affects an individual's ability to understand and use language. They could lose the ability to formulate words in a sentence or understand those words. 
    • The progressive non-fluent variant of PPA impacts an individual's ability to speak. Their speech could be labored, very hesitant, or ungrammatical. 
  3. If your loved one has disturbances in motor skills, the frontotemporal disorder can be with behavior (bvFTD) or language (PPA) complications.
    • Amyotrophic lateral sclerosis, ALS, or Lou Gehrig's disease causes the wasting away of or weakness of muscles. 
    • Progressive supranuclear palsy (PSP) causes changes in posture, difficulty walking, eye movement complications, and muscle stiffness. 
    • Corticobasal syndrome causes legs and arms to be stiff or uncoordinated. 

Behavior, Language, and Mobility Symptoms of Frontotemporal Dementia 

The symptoms and signs of the disease can range from person to person. The symptoms can be clustered into three different categories — directly related to the type of FTD. It's important to understand that an individual can have symptoms from multiple clusters. 

Behavioral Symptoms

Some of the most common behavioral symptoms include:

  • Loss of inhibition
  • Inappropriate social behavior
  • Increased interest in sex
  • Lack of judgement
  • Reduced empathy
  • Frequent agitation or mood changes
  • Apathy
  • Lowered personal hygiene
  • Repeated compulsive behavior
  • Eating habit changes

Language Problems 

Certain types of frontotemporal dementia can cause loss of speech or any of the following problems: 

  • Problems naming objects
  • Complications understanding spoken and written language
  • Making mistakes in the construction of a sentence
  • Forgetting word meanings
  • Hesitation when speaking
  • Less frequent speech

Mobility Symptoms

While rarer, another type of frontotemporal dementia involves problems with movement. These symptoms can include: 

  • Spasms of muscles
  • Rigidity
  • Tremors
  • Problems swallowing
  • Reduced coordination
  • Weakness of muscles
  • Inappropriate crying or laughing

How Do Alzheimer's Disease and Frontotemporal Dementia Differ? 

As we previously mentioned, frontotemporal dementia is often misdiagnosed as Alzheimer's disease. For clarity, we've created a helpful, quick-reference guide. 

  1. Behavioral Changes. While behavioral changes tend to occur in later stages of Alzheimer's, they are usually the first noticeable symptom in behavior variant frontotemporal dementia, which is the most common type of the condition. 
  2. Age of Diagnosis. The majority of those with frontotemporal dementia are diagnosed in their early 40s and early 60s. However, Alzheimer's becomes more common as an individual ages. 
  3. Spatial Orientation Problems. Spatial orientation problems are usually more common in people with Alzheimer's disease. 
  4. Problem with Memory. Memory loss is more prevalent in early Alzheimer's disease than early FTD. However, FTD can cause memory loss, but it's usually accompanied by language and behavior effects.  
  5. Delusions. Hallucinations are common in those with Alzheimer's and not so common in people with FTD. 
  6. Speech Problems. Individuals living with Alzheimer's may have complications remembering names or thinking of the right word. On the other hand, people with FTD tend to struggle to make sense of speech and reading. 

Contact Long Island Alzheimer and Dementia Center 

At the Long Island Alzheimer's and Dementia Center, we are proud to provide hands-on programs and services to caregivers and diagnosed individuals impacted by frontotemporal dementia, Alzheimer’s disease, and all other forms of dementia. The LIAD Center offers several stimulating, stage-specific programs for those living with dementia and supportive services for caregivers.

Contact the Long Island Alzheimer's and Dementia Center today to learn more about the services available to you and your loved one.

Frontotemporal Dementia (FTD) represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain, affecting behavior, language, and movement. In our commitment to education and support for all forms of dementia, we align with partners who share our vision. Our partners at the vavada partners program are dedicated to promoting innovative solutions that enhance understanding and care for dementia patients. Discover how their commitment to excellence can advance our collective knowledge and support efforts.
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