Understanding Frontotemporal Dementia: Symptoms and Coping Tips

Medically Reviewed By William C. Lloyd III, MD, FACS
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Frontotemporal dementia (FTD) is an uncommon form of dementia that causes difficulties with personality, behavior, movement, and communication. Learning that you or your loved one has FTD can be scary. Changes to behaviors and personalities can be confusing and affect everyone involved.

FTD is an uncommon form of dementia that can be difficult to diagnose. It affects the frontal and temporal lobes in the brain, which control personality, movement, language, and social skills.

This article explains what FTD is, including the differences between FTD and Alzheimer’s disease, the causes and symptoms of FTD, some tips for carers, and frequently asked questions about FTD. 

What is frontotemporal dementia?

Younger woman hugging an older woman
Michela Ravasio/Stocksy United

FTD is sometimes known as Pick’s disease or frontal lobe dementia. FTD affects the frontal (behind your forehead) and temporal (behind your ears) lobes in the brain.

FTD can affect the front or sides of the brain or both at the same time. The condition develops slowly, and, over time, other symptoms may appear as it affects more parts of the brain.

There are two main types of FTD: behavioral variant FTD and primary progressive aphasia (PPA).

Behavioral variant FTD occurs when there is damage to the lobes at the front of the brain. These lobes control our emotions and influence how we behave. They also help us solve problems, focus, and multitask.

PPA occurs when there is damage to the lobes on the left and right sides of the brain. This causes problems with language and communication. For example, you may forget certain words, how to read or write, or the names of objects or people you know.

The exact number of people with FTD is unknown, but in the United States, around 50,000–60,000 people ages 45–65 years have either the behavioral variant or PPA. FTD often starts around the ages of 45–65 years, but it can affect younger and older adults as well.

Differences between frontotemporal dementia and Alzheimer’s disease

The key differences between FTD and Alzheimer’s disease are as follows:

  • Age: People with FTD often receive their diagnosis in their early 40s or early 60s. Alzheimer’s disease is more likely to begin in older adults.
  • Behavioral changes: Changes in behavior are key symptoms at the start of FTD. For individuals with Alzheimer’s disease, changes in behavior often start later on.
  • Loss of memory: FTD can cause memory loss, but forgetting things often begins later on in the condition. Memory loss for those with Alzheimer’s disease usually begins earlier on.
  • Confusion: Getting lost in familiar places does not often happen to those with FTD, but it can often happen to those with Alzheimer’s disease.
  • Hallucinations: Seeing things that are not there is uncommon for people with FTD, but it can be common for those with Alzheimer’s disease.
  • Difficulties with speech: People with FTD tend to struggle with finding the right words for objects and remembering the names of people. This is more common in FTD than in Alzheimer’s disease.

Learn more about Alzheimer’s disease here.

Symptoms of frontotemporal dementia

There are various symptoms that you may experience with FTD. Some examples include:

Personality-related and behavioral symptoms

  • behaving insensitively or rude
  • being impulsive
  • acting selfishly
  • being unsympathetic toward others
  • having poor personal hygiene
  • overeating
  • having little motivation
  • losing interest in people
  • being quiet
  • repeating behaviors

Language- and communication-related difficulties

  • forgetting words
  • confusing words or sentence structures
  • repeating words or phrases
  • talking more slowly than usual
  • struggling to make the right sounds when speaking
  • losing the ability to speak

Symptoms of progressive FTD

As FTD progresses, you may notice your symptoms changing. For example, you may:

  • become forgetful
  • struggle to work things out for yourself
  • find planning and organizing difficult
  • feel restless or easily distracted
  • be aggressive
  • not recognize your family members

It is also common for some people to begin having physical difficulties in the later stages of FTD. These symptoms can include:

As a result of your symptoms progressing, you may need full-time care.

What are the causes and risk factors for frontotemporal dementia?

The sections below cover possible causes and risk factors associated with FTD.

Possible causes of frontotemporal dementia

FTD happens when abnormal proteins build up inside the brain cells. This buildup kills the nerve cells and pathways in the frontal or temporal lobes of the brain. This causes the connections between the two lobes to break down.

As time passes, chemical messengers in the brain decline, and more nerve cells become damaged and die. This causes the tissue in the lobes to shrink. 

FTD affects males and females equally. Researchers are not sure of the exact cause of FTD or why some people get it while others do not.

There is not enough evidence to say whether or not health conditions such as high blood pressure or diabetes can increase the risk of FTD.

Possible risk factors for

frontotemporal dementia

What researchers do know is that FTD is more likely to be genetic and passed down from a parent to a child.

Around 1 in 8 people with FTD have relatives with FTD.

Frontotemporal disorders that run in families are often due to abnormal proteins forming inside brain cells. The protein then damages the cells and stops them from working as they should. These changes can lead to issues in the frontal and temporal lobes of the brain and cause FTD. 

Learn more about dementia here.

How do doctors diagnose frontotemporal dementia?

There is no single test that doctors can use to diagnose FTD. It can also be difficult for them to diagnose FTD because it is an uncommon form of dementia. They need to rule out other forms of dementia as well as other causes of behavioral, motor, and cognitive deterioration before establishing an FTD diagnosis.

However, there are various tests that can ensure a correct diagnosis. These include:

  • Blood tests and a physical examination: These tests can rule out other possible illnesses.
  • Medical history and symptoms: Your doctor will need to understand your medical history and symptoms. If it is difficult for you to describe your symptoms, it can be useful for a friend or family member to attend the appointment with you.
  • Testing mental abilities: These tests focus on social awareness and behaviors. Your doctor may ask a series of questions and ask you to perform certain tasks.
  • Scans: Your doctor may ask you to have an MRI or PET scan so that they can take a look at the affected parts of your brain. 
  • Lumbar puncture: This test collects and reviews spinal fluid. It can help determine if Alzheimer’s disease is causing your symptoms rather than FTD.
  • Genetic testing: This can highlight whether or not you have the specific gene that causes FTD.
  • A postmortem: After a person has died, tests can determine whether or not they had FTD.

Treating and managing the symptoms of frontotemporal dementia

There is currently no cure for FTD. However, there are some things that you can do to help manage your symptoms.

For example, your doctor will advise you to lead a healthy and active lifestyle to help reduce and manage your symptoms for as long as possible.

They may also prescribe medications to help manage specific FTD symptoms, such as compulsions, sleep disorders, depression, and urinary incontinence. Possible medications include antidepressants to help with behavioral changes and antipsychotics to help control aggressive behavior.

Furthermore, following a routine can help you reduce confusion and provide you with a framework for your daily tasks.

Other therapies and options your doctor may suggest include:

  • occupational therapy
  • speech and language therapy
  • physical therapy
  • relaxation techniques
  • ideas to reduce challenging behaviors

Tips for caregivers

Caring for a loved one with FTD can be challenging, and you may experience emotions ranging from a sense of loss to feeling overwhelmed. Finding ways to manage your emotions and support your loved one is important, but knowing what to do may seem difficult.

Here are some tips for caring for someone with FTD:

  • Apply for a carer’s assessment.
  • Find out if you are eligible for carer’s benefits.
  • Do not take comments or behaviors personally.
  • Accept your feelings and emotions.
  • Seek support with daily practical tasks.
  • Find support, training, and informational groups.
  • Consider day centers or respite care facilities.
  • Practice self-care.

Frequently asked questions

Some questions people ask about FTD include the following.

What is the life expectancy for someone with

frontotemporal dementia?

Life expectancy after diagnosis varies. Some people with FTD will decline quickly. Other people will live with the condition for an average of 8–10 years.

Can someone have both frontotemporal dementia and Alzheimer’s disease?

Yes, a person can have FTD and another form of dementia, such as Alzheimer’s disease.

What is the most common symptom of

frontotemporal dementia?

The most common symptoms of FTD are changes in a person’s behavior, personality, and judgment.

Summary

FTD develops when abnormal proteins form inside the brain cells.

There are two main types of FTD: the behavioral variant and PPA. Damage to the lobes can cause problems with and changes to an individual’s movement, personality, communication, and behavior.

If you have any questions or concerns about FTD, contact your doctor for support and advice. 

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2022 Mar 28
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