What is Frontotemporal Dementia? Get the Essential Facts

frontotemporal dementia

Frontotemporal dementia tends to start at younger ages

Frontotemporal dementia is the 5th most common cause of dementia. It’s also referred to as FTD or frontal lobe dementia.

It’s estimated that there are 50,000 to 60,000 people with FTD in the United States. It often occurs between the ages of 45 and 65, but can also start as early as age 20 or as late as the 80s.

We explain what frontotemporal dementia is, common symptoms, how it’s diagnosed, how it compares to Alzheimer’s, risk factors, and treatment options.




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What is frontotemporal dementia?

Frontotemporal dementia can be challenging for doctors to diagnose. The signs and symptoms can be very different from one person to another. In the past, people were often misdiagnosed with depression, schizophrenia, or Alzheimer’s disease.

FTD affects the frontal and temporal lobes of the brain. It’s sometimes called frontal lobe dementia and used to be known as Pick’s disease.

The affected areas of the brain control personality, emotions, behavior, executive functioning, and speech. At first, frontotemporal disorders leave other brain regions untouched, including those that control short-term memory.

FTD is divided into 3 categories based on the most prominent symptoms in each:

  • Behavioral variant frontotemporal dementia (bvFTD) – affects personality and behavior
  • Primary progressive aphasia (PPA) – first affects speech, then behavior
  • Progressive nonfluent aphasia – causes loss of ability to recall and speak words

 

Frontotemporal dementia symptoms

The most common signs and symptoms of frontotemporal dementia are extreme changes in behavior and personality.

In the early stages of FTD, people typically have one type of symptom. As the disease progresses, more types of symptoms will appear as more parts of the brain are affected.

It’s important to know that these behaviors are caused by physical damage inside the brain and aren’t things the person can control or contain. Often, they aren’t even aware that their behavior has changed or that it’s become a problem.

Common behavioral and personality symptoms (especially in bvFTD)

  • Changes in personality and mood – like becoming depressed, self-centered, or withdrawn
  • Avoiding socializing or being unwilling to talk
  • Repetitive or obsessive behavior
  • Lack of inhibition or lack of social tact
  • A decline in personal hygiene
  • Lack of judgment
  • Apathy – like no longer paying attention to hobbies and interests
  • Lack of awareness of thinking or behavioral changes
  • Loss of empathy and other interpersonal skills
  • Increasingly inappropriate actions like unusual verbal, physical or sexual behavior
  • Changes in eating habits, especially overeating
  • Weight gain due to overeating
  • Putting things in the mouth or trying to eat inedible objects

However, people with FTD can usually keep track of day-to-day events and understand what’s going on around them. And people with bvFTD usually keep their language skills and memory until late in the disease.

Common speech and language symptoms (especially in PPA)

  • Difficulty finding the right word or in calling objects by the correct name
  • Trouble with reading and writing
  • Losing the ability to understand or put together words in a spoken sentence
  • Speaking in a very hesitant or ungrammatical way

Some people with FTD could have severe problems recalling and understanding words, but still be able to speak fairly normally. But as the disease progresses, less and less language is used until the person becomes practically mute.

Common movement symptoms
In later stages, people develop movement problems. Some people may develop amyotrophic lateral sclerosis (ALS or Lou Gherig’s disease).

  • Tremors
  • Rigid muscles
  • Muscle spasms or weakness
  • Poor coordination
  • Difficulty swallowing



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Diagnosing frontotemporal dementia

There isn’t a single test that specifically diagnoses FTD. Doctors must try to identify certain characteristics while ruling out other possible causes, like liver or kidney disease.

It can be especially difficult to diagnose in the early stages because the symptoms often overlap with those of other conditions.

Standard testing may include blood tests, MRI, CT scan, PET scan, and neuropsychological testing.

Tests used to diagnose frontotemporal dementia include:

  • Blood tests to help identify other conditions that could cause similar symptoms
  • Neuropsychological testing to check judgment and memory skills as well as to help determine the type of dementia, especially at an early stage
  • Brain imaging to check for tumors, bleeding, or blood clots
  • Magnetic resonance imaging (MRI) tests to give doctors a detailed image of the brain
  • Computerized tomography (CT) scans to create images of brain in layers

 

The difference between Alzheimer’s and frontotemporal dementia

Age at diagnosis
Most people with frontotemporal dementia are diagnosed between ages 45 and 65. The majority of Alzheimer’s cases happen in people over age 65.

Memory loss
With FTD, problems with memory may show up in advanced stages. In Alzheimer’s, memory problems show up early in the disease and tends to be a more prominent symptom.

Behavior changes
Changes in behavior are an early sign of FTD and often are the first noticeable symptoms. Behavior changes are also common as Alzheimer’s progresses, but they usually occur later in the disease.

Problems with spatial orientation (like getting lost in familiar places) are more common with Alzheimer’s than with FTD. Hallucinations and delusions are also more common as Alzheimer’s progresses, but not very common in FTD.

Speech
People who have FTD often have more problems speaking, understanding speech, and reading than people with Alzheimer’s.

People with Alzheimer’s might have trouble thinking of the right word or remembering names, but they usually have less trouble making sense when they speak, understanding when others speak, or reading.

 

Frontotemporal dementia risk factors

Today, the only known risk factor for developing FTD is if you have a family history of dementia.

However, not everyone with a family history will develop FTD. It’s estimated that more than half of people diagnosed with FTD don’t have a family history of dementia.

 

Frontotemporal dementia treatment and life expectancy

Unfortunately, like other dementias, FTD is a progressive disease with no cure. That means the symptoms will worsen over time. The speed of decline will be different for each person.

Treatment options
Current treatments focus on easing symptoms, but can’t slow the progression. There are medications that can be used to improve quality of life by reducing behavioral symptoms.

Medications that may be used to reduce behavioral problems include:

  • Antidepressants like trazodone
  • Selective serotonin reuptake inhibitors (SSRIs) like Zoloft (sertraline) or Luvox (fluvoxamine)
  • Antipsychotics like Zyprexa (olanzapine) or Seroquel (quetiapine)

Important: These medications must be used with caution because the side effects include an increased risk of death in people with dementia.

Speech therapy could also help with language issues by teaching alternate communication strategies.

Life expectancy
Frontotemporal dementia shortens a person’s life span. Each person is different, but most people with FTD live 6 to 8 years after the first symptoms appear.

FTD will eventually cause a person to have difficulty with essential bodily functions like chewing, swallowing, moving around, and controlling the bladder and bowels. These changes can cause serious infections in the lungs, urinary tract, and skin – leading to death.

 

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By DailyCaring Editorial Team
Image: Silver Roots


5 Comments

  • Reply April 7, 2019

    Deni Goldman

    Hi so my father was diagnosed with this dementia and the biggest issue is his irritability towards his wife. She put him in a memory care unit and told him it was just for three weeks so they could get some antidepressant meds working . He doesn’t like to take meds never has so he fought it for a bit but finally gave in . he has been in the unit for over three months begging to be taken home. She does not want him home and because she is his power of attorney I do not have any decision-making powers as his child . His wife is not my mother. He is begging me every day to come and get them out of there . He does not live in the same state as me . I’ve been afraid to see him because I do not know how to leave him if I do not show up with a suitcase to take him home . The thing is, the assessment from the facility that he is in says that he does not need assistance with anything and that the only reason he is not home is because she fears he will be home not take any medication for his anxiety and therefore will get worse . I feel she is being opportunistic by keeping him there when he clearly could be home . He’s even threatening to walk home from the center . His speech is affected but he is extremely articulate in text messaging and very aware of everything and the fact that she has let him down . His depression has not improved at all with antidepressants which is what she has been holding over his head to go home because he is more depressed thinking about being left there and how she has abanded him and thus the medications will not work . The only reason I even ended up in a memory care unit is because he fell in the home and broke a couple ribs . Once he was released from the hospital he went to rehab and from there he’s alegend three weeks stay at this facility . It was supposed to be respite until his meds were under control for his depression . clearly she has not had a plan to take him home since day one and use this incident as an excuse to get him out of the house so she would not have to be With him. I am at a loss I want to help my father but she is his Health care proxy. He’s turning 80 years old this week and all he has asked for us to be home before his birthday . She refuses to let him come home . I fear that if I was to bring him home he has no key and she would not even let us in and would likely call the police . if that were to happen of course he would be angered and somehow this whole situation would just worsen . She has become very about her self, Her needs and what is best for her and us put my fathers needs after hers have been met. Meanwhile the house and all of their bank accounts are in both of their names so walk he is living in the nursing home indefinitely, she has the home and all of the finances most of which he has earned . I am at a loss is there anything you can do to help ??? Thank you.

    • Reply June 8, 2019

      DailyCaring

      I’m so sorry about this situation. Sometimes it can be tough to know when a person with the Power of Attorney might not be acting in the older adult’s best interests.

      However, based on your father’s dementia diagnosis and behavior, it sounds like he does need help with day-to-day life and wouldn’t be able to live independently and care for himself appropriately. It may not be possible for him to safely live at home. When someone has dementia, their judgement and ability to make sound decisions is compromised — even if they may seem to be able to function normally for a little while.

      We’d recommend contacting an attorney to find out about your legal options. An elder law attorney may be best suited to handle this type of situation since they’re likely to have more experience with them.

      More info about elder law attorneys:
      — How an Elder Law Attorney Can Help Seniors and Caregivers https://dailycaring.com/how-an-elder-law-attorney-can-help/
      — 5 Tips for Choosing a Good Elder Law Attorney https://dailycaring.com/how-to-find-an-elder-law-attorney-you-can-trust/

  • Reply September 4, 2017

    anonomyous

    My family is presently dealing with a member that has FTD. Inappropriate sexual behavior is a problem. We desperately need to get them into a memory/nursing facility because of decline and inability to live alone. many of the other symptoms listed in this article are also present. Facilities we contact refuse admission because of this specific problem. It’s getting worse and we are at our wits end. Anyone with advise or experience – I’d love to hear from you. Thanks.

  • Reply September 4, 2017

    Anonymous

    Thank you for providing such a comprehensive and informative web site for families dealing with dementia in all its forms. We are struggling to find care for a family member with FTD – deviant behaviors prevent homes from taking them in. Any suggestions or experience would be appreciated.

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