Imagine watching the personality of someone you love slowly and inexplicably change. A once-reserved person becomes shockingly impulsive and inappropriate, or a fluent speaker starts struggling to form simple sentences, all while their memory remains intact.
This is the confusing and often misdiagnosed reality of Frontotemporal Dementia (FTD). This disease strikes earlier than Alzheimer’s, typically between ages 45 and 65, and targets the very core of a person’s identity, behavior, and speech. For families, the journey often begins with bewildering changes that are mistaken for psychiatric issues.
This guide cuts through the confusion to provide the essential facts about FTD, explaining its unique signs, how it differs from other dementias, and the vital knowledge you need to advocate for your loved one.
Frontotemporal Dementia Tends to Manifest Itself 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 living 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 signs and symptoms, how it’s diagnosed, how it compares to Alzheimer’s, risk factors, and treatment options.
What is Frontotemporal Dementia?
Frontotemporal dementia can be challenging for doctors to diagnose.
The signs and symptoms can vary widely from person to person. 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 brain regions affected by the condition regulate personality, emotion, behavior, executive function, and speech.
Initially, frontotemporal disorders leave other brain regions intact, including those that support short-term memory.
FTD is divided into three 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
Signs and Symptoms of Frontotemporal Dementia
The most common signs and symptoms of frontotemporal dementia are extreme changes in behavior and personality.
In the early stages of FTD, individuals typically exhibit a single type of symptom. As the disease progresses, additional symptoms will appear as more brain regions 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.
People with FTD typically maintain their language skills and memory until late in the disease.
Standard speech and language symptoms (especially in PPA)
- Difficulty finding the right word or 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 may have severe difficulties with word recall and comprehension, yet still speak relatively fluently.
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 Gehrig’s disease).
- Tremors
- Rigid muscles
- Muscle spasms or weakness
- Poor coordination
- Difficulty swallowing
Diagnosing Frontotemporal Dementia
There is no single test that diagnoses FTD. Doctors must identify specific characteristics while ruling out other possible causes, such as liver or kidney disease.
It can be tough to diagnose in the early stages because the symptoms often overlap with those of other conditions.
Standard testing may include blood tests, MRI, CT, PET, 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 give doctors a detailed image of the brain
- Computerized tomography (CT) scans are used to create images of the brain in layers
VIDEO: Understanding Frontotemporal Dementia
The Difference Between Alzheimer’s and Frontotemporal Dementia
Age at diagnosis
Most people with frontotemporal dementia are diagnosed between the ages of 45 and 65. The majority of Alzheimer’s cases happen in people over age 65.
Memory loss
With FTD, memory problems may emerge in advanced stages.
In Alzheimer’s, memory problems show up early in the disease and tend 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 disease may have difficulty retrieving the right word or remembering names. Still, they usually have less difficulty making sense when they speak, understanding others when they are spoken to, 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.
This indicates that the symptoms will worsen over time. The rate of decline will vary for each person.
Treatment options
Current treatments focus on alleviating symptoms but can’t slow disease progression.
Some medications can improve the 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 can also address language difficulties by teaching alternative 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, including chewing, swallowing, ambulation, and bladder and bowel control.
These changes can cause serious infections of the lungs, urinary tract, and skin, leading to death.
Final Thoughts About Frontotemporal Dementia
While FTD is a progressive disease without a cure, understanding its unique path is the first and most powerful step toward compassionate care. This knowledge enables you to recognize that distressing behaviors are symptoms of neurological damage, not personal choices, thereby shifting your approach from one of frustration to one of empathy.
By focusing on symptom management, safety, and quality-of-life preservation, you can navigate this challenging journey with greater clarity and resilience. Remember, you are not alone. Connecting with healthcare professionals who understand FTD and seeking support from communities of fellow caregivers is crucial.
Armed with these essential facts, you can become the most informed and steadfast advocate for your loved one’s dignity and well-being in the face of this complex condition.
Recommended for you:
- 6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia
- 8 Treatable Diseases That Mimic Dementia
- SAGE Test: 15 Minute At-Home Test for Alzheimer’s
About the Author
Connie is the founder of DailyCaring.com and was a hands-on caregiver for her grandmother for 20 years. (Grandma made it to 101 years old!) She knows how challenging, overwhelming, and all-consuming caring for an older adult can be. She also understands the importance of support, especially in the form of practical solutions, valuable resources, and self-care tips.
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.
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/
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.
I’m so glad our articles have been helpful! I’m sorry this situation has been so tough 🙁 Because this is an especially difficult issue, you might consider hiring a couple of key experts to help find a solution. First, a geriatrician who specializes in tough dementia cases may be able to help. They’re more likely to have the expertise and experience to find out if any current medications or health conditions are causing or adding to the problem or if effective behavioral medication is needed (the right dose and right drug can be tough to figure out). Second, geriatric care managers are experts in the resources available in the local area. They may be able to help find a housing situation that would work for your family member.
Here are some articles that may be helpful:
— http://dailycaring.com/9-ways-to-handle-alzheimers-and-sexually-inappropriate-behavior/
— http://dailycaring.com/how-geriatric-care-manager-can-help-you/
— http://dailycaring.com/when-hiring-a-geriatric-care-manager-makes-sense/
I wish you all the best in finding a solution that will work for everyone ❤
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.