10 Signs of Frontotemporal Dementia

A group of disorders caused by cell degeneration, frontotemporal dementia (FTD) affects the brain, specifically its areas associated with personality, behavior and language. Once considered a rare disease, FTD may account for 20-50% of dementia cases in people younger than age 65, according to the Alzheimer’s Association.

10 Signs of Frontotemporal Dementia

FTD causes cell damage that shrinks the brain’s frontal (area behind the forehead) and temporal (area behind the ears) lobes. The disease generally starts with personality and behavior changes and may eventually lead to severe memory loss.

Often miscategorized as psychiatric illness, frontotemporal dementia typically strikes between the ages of 45 and 65. However, the Association for Frontotemporal Dementia Degeneration (AFTD) indicates that cases have occurred as early as age 21 and as late as age 80.

What Causes Frontotemporal Dementia?

Although it has been linked to a variety of gene mutations, the cause of FTD remains unknown. Physicians may use multiple tests to identify characteristics of FTD and rule out other possible conditions, such as liver or kidney disease. Standard testing may involve blood work, MRI, CT scan, PET scan and neuropsychological testing.

Signs and Symptoms of Frontotemporal Dementia

Each case of FTD is different, but the illness generally becomes more distinguishable from other brain conditions as it progresses. Symptoms may occur in clusters, and some may be more prevalent in early or later stages. Here is a list of ten signs of FTD:

  1. Poor judgment
  2. Loss of empathy
  3. Socially inappropriate behavior
  4. Lack of inhibition
  5. Repetitive compulsive behavior
  6. Inability to concentrate or plan
  7. Frequent, abrupt mood changes
  8. Speech difficulties
  9. Problems with balance or movement
  10. Memory loss

What is the Difference Between FTD and Alzheimer’s?

Like Alzheimer’s disease, FTD causes brain atrophy that leads to a progressive loss of brain function. Key differences between the two diseases include:

  • Age at diagnosis: Symptoms of FTD usually appear between the ages of 45 and 65, whereas the majority of Alzheimer’s cases occur in people over age 65.
  • From behavior changes to memory loss: Changes in behavior are an early sign of FTD, and problems with memory may occur in advanced stages. In contrast, Alzheimer’s affects memory early on and may lead to behavior issues as it progresses.
  • Speech problems: People with FTD often suffer greater problems speaking, understanding speech and reading than people with Alzheimer’s.

Treating FTD

Unfortunately, FTD has no cure. Current FTD treatments focus on easing symptoms but cannot slow the disease’s progress. Physicians may prescribe antidepressant or antipsychotic drugs to combat behavioral symptoms. Patients suffering from language issues may benefit from speech therapy.

The average survival rate after FTD diagnosis is six to eight years. In the final stages, patients typically require 24-hour care.

Long-Term Care for FTD

Experts recommend that caregivers prepare for long-term care management for their loved one with FTD. Medical specialists, nursing care, and legal and financial advisors should all be under consideration.

The Association for Frontotemporal Degeneration provides a Support and Resources page to help guide you through a new diagnosis. This page also provides a place for sharing stories with other families as a means of helping each other cope and gaining insight on this disease.

What particular signs of FTD did your loved one show? What resources did you seek for help with managing his or her condition?

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Please leave your thoughts and comments

  • Beverly Hamilton

    Soon after my husband was diagnosed with probable dementia, I discovered sleep apnea. He was accepted into a program with Stanford U correlating sleep apnea and diminished neurological capacity. He had significant SA that had gone undetected because he was tall and thin and rarely snored–just ‘gasped’. An MRI showed infarcts in his brain that had occurred over the years. A neurologist says he now directs patients to a sleep study when they show symptoms of dementia. In my book chronicling what became our last year, 3 specialist in sleep disorders wrote in the addendum: Neurologist Dr. Mack Jones, author Deadly Sleep, psychiatrist/sleep specialist, Dr. Curran and ENT, Dr. Park. A link to Dr. Park’s site, who wrote an article in the NY Times: Sleep Apnea Masking as Dementia is on my site: http://www.ourtimelessyear.com. Hope this is helpful. Beverly Hamilton

    • Andy

      I’ve noticed many of the signs of frontal lobe dementia in myself. I am currently struggling with extreme insomnia. The dr tried to be helpful and prescribed a sleeping pill which I refused. Ive noticed also the stopper that most of us have that keeps us from verbalizing our internal feelings for me is completely gone now. I no longer even feel sympathetic to those who I have let loose a verbal bashing upon. The slightest thing will set me off now on a tirade. I’ve suffered multiple head injuries to my forehead over the years from 2 car accidents and a run in with an angry bull and suspect this may be the root cause of my problem.

      How does sleep disorders such as sleep apnea play a part in dementia?

      • Rose of Sharon

        Andy:

        It is only my opinion, but I believe frontotemporal dementia may be an autoimmune disorder. My husband has terrible allergies and snored loudly all his life. I really don’t care if people scoff, but I think a virus or bacterium entered his brain through his nasal passages and targeted the neurons in the frontal lobe. And combined with some sort of trigger, such as stress and/or a gene primed for the disease, the sickness took hold.

        I would appreciate if “experts” stop advising people to eat healthily, read tomes and construct 5000-piece jigsaw puzzles to ward off brain disease.

        • Rose of Sharon

          Andy: I also think it could possible be a fungus attacking the brain.

          • Bob

            Get him a Petscan. This is the only way to know for sure

            Bob, 63, inherited FTD from Mother

          • Griffin Mathers

            I am sure she didn’t do that to you on purpose, a lot of family members being tossed under a bus here.

          • Griffin Mathers

            Are you a doctor? A nutritionist? You have a lot of anger and resentment and then you think dementia is caused by a mushroom. Or a virus. Or sleep apnea.
            The poor man left you, you should be slap frickin’ happy. And you now what? Puzzles have been GREAT for my Mother!

        • judith salerno

          I agree with you about the auto immune disorder because my dr said I have this disorder, ran lots of test and can not figure out which one I have . he said there are hundreds, that was 8 years ago, and now after all these years he did a brain scan and found out that this frontotemporal dementia is what I have, I am 66 years and have had this at least 8 years at least.

          • bv(FTD)

            Dear Ms. Salerno:

            You agree this is an autoimmune disorder. What do you think is the cause? Viral, bacterial, fungal, chemical, environmental? Yes, we know that in 1/3 it is genetic, but what else? Stress? Overuse of 1 side of the brain? A lack of helpful immunities in our sterile environment to repel? What do YOU think?

            Thank you.

      • Erin Shepherd

        Just be patient and keep loving and praying for him.

        • Griffin Mathers

          Why are you telling Andy that, he thinks he has symptoms of this, he didn’t mention anyone else.
          A lot of these comments are disturbing – you MUST go to a doctor to be diagnosed! Please do not play around with your health! Don’t ask another stranger to dx you, Andy, I hope so much that you were able to go to a Doctor!!

          • Princess Roxie

            What about healing the gut

          • bv(FTD)

            Princess:

            Yes, another good theory. At this point, we have to explore everything.

    • Malinda Hill

      My husband just walk out on me July 7th. Took almost all the money from the bank and filed for divorce all in one morning with the help of his older daughter by another marriage. Two days later he changed his life insurance. We still have a 21 year old at home that he used to adore and he won’t speak to her. After being together for over 24 years, married 23 years of that time, I am confused, heartbroken, and lost. It feels like a nightmare. I know his older daughter has a lot to do with it, but I also know his dementia has gotten worse. He was the love of my life and the other half of my soul. I miss him so much, but I don’t miss the terrible mean part of him that the dementia (FTD) brought on. I was told by many that when my heart heals, I will be better off in the long run. Probably, but what about him? Will he be taken care of? Probably not, and that will always shatter my heart.

    • Texdakota

      Yes, I was feeling extremely tired and forgetful and went to 5 doctors before my current doctor suggested a sleep study and they found severe sleep apnea. I have been using a CPAP machine for two years now and it has changed the quality of my life. If anyone suspects that they have this condition and they have the means to do so, get tested.

  • Rose of Sharon

    My husband of 25 years walked out on me and our 4 children the day after buying an expensive condo in secret. I should say that he actually ran away because he darted out of the house, giggling euphorically. He left all of his possessions behind, including his clothes and toiletries. Our 2 youngest left for school that morning and returned home to find their stable, happy world shattered.

    I had stopped going out with my husband a few months before he left because he started yelling and insulting me in public, oblivious to the raised eyebrows and dropped jaws on the people who witnessed his outbursts. He had only ever gushed about me and now he was tearing me apart. He also started frequenting bars and sleeping around.

    A year before his sudden departure he bought several rentals, and decided it was a clever idea not to pay the IRS.

    Two years before, he opened bank accounts in his name only and began to grow distant from me. He preferred to exercise excessively and hang out with his young trainer. My husband did take me to see a comedian he really liked, but sat like a stone throughout the performance.

    I made the neurology appt. when my husband left our son stranded in a town 1 1/2 hours away but swore he didn’t. He is divorcing me now, but at least the children know it is because he is sick and not because he is bad. I feel so sorry for the spouses and families who don’t have the comfort of the diagnosis.

  • Rose of Sharon

    You may be cataloging behaviors so I will add a couple more: I asked my husband to claim the possessions he had left behind which the kids and I had packed up for him. My husband walked in the house and started displaying an odd, Tourette’s-like verbal tic. He snapped his head to the side, spat out “bitch” then snapped his head again and said “crazy.” He repeated these utterances several times.

    But he did not know there were people in the back room who heard him! My husband shook their hands and made jovial small talk as if everything was A-Okay.

    Also, the day he left I gave him his dental appt. card. He looked up to the ceiling while ripping it into pieces and trilled “I’ll never have to do this again!” while the confetti rained down on us. Then he exuberantly ran out of the house.

    • Griffin Mathers

      It seems like you are really mad at him. Hopefully you get that it was the illness, not him. Kinda seems like you are venting.

      • bv(FTD)

        Mr. Mathers:

        I am trying to INFORM people. I got my husband diagnosed very early, but unfortunately, many people with FTD aren’t diagnosed. Instead, in late stage, they wind up alone, homeless on the streets, in psychiatric hospitals or in prison.

  • theresa mansfield

    My husband has been diagnosed now for moroe than 1 year. hindsight indicates that I should have noticed small things in his behaviour, he had become less observant, my daughter would say how he had no ‘cop on’ was doing little inappropriate things and you would have to call him several times before you were acknowledged. We thought he had a hearing problem but that was checked and was ok. The final issue was when he was accused of stealing and we had the police at the house. He attempted suicide and was admitted to a psychiatric unit for a week and in the follow up was eventually diagnosed of Fronto temporal dementia. he has this repetitive issue where he has to play with something in his hand all the time, will sit and much through bags of sweets, has the tv up very loud and will watch all these old programmes and gets irritated if someone wants to watch tv as he considers this his domain and is adept at using controls, He frequently forgets things, like giving the dog food and water or to lock up the house at night, His short term memory is affected too and overall he is now difficult to live with as he has no sense of personal hygiene or keeping the house tidy. He has no empathy with anyone and even though he was a teacher he has no interest in helping our daughter who has any problems with schoolwork. Everything is left to me, all the issues with bills, mortgage, bank, house maintenance, etc. and he has no interest in anything. His friends have all vanished into thin air and he now has no friends and does not appear concerned as he appears to treat everyone outside family with suspicion. Even his own family do not visit now and have essentially blanked us which is very upsetting for me and family but does not seem to bother him. He does not engage well with people anymore and is inappropriate in company, laughing inappropriately at his own jokes, snuffling out loud repeatedly. flatulating in company, and generally embarassing. He has to be told to wash and change his clothes but can still make bread and do a small amount of housework like ironing, but is indifferent to anyone or their concerns. It is a very difficult life and he has a long way to go yet but already it is proving very challenging because he is not dependable and has to be watched all the time. It is like living with a different person who does not care about you or anything else. He will get something into his head to do and nothing will change that idea and he will do it when you are not there like painting 2 presses in the kitchen when all others were a different colour ‘just cleaned them up’. Didnt get it that it was a different colour till pointed out ‘sure its grand’. so we are not sure how things will turn out but there is no cure and it is a downward trajectory for him. He has been taken off all the mood altering medication and appears a bit brighter but it was of no benefit other than sedation. also there appears to be no public assistance because he has a small pension and we are expected to pay for everything from medication to hosp appms etc. He had to retire on health grounds many years early and that took 3 years and a long battle with his employer which we had to get legal assistance with in the end. If he had no job and was a public patient he would be entitled to all home help etc but he is entitled to nothing having worked for the government for many years. It is disgraceful really because if it was someone who came from another country they would get everything free and this really annoys me. It seems one is better off if you get sick and you never had a job because then you are entitled to everything but otherwise no.

  • William Burr

    Hi, new here..my 78 yr old brother is thought to have this disease. His wife observed that, upon starting an antidepressant he lost all inhibition, became happy but unreceptive, and as i have witnessed, socially unhinged, visiting table after table at restaurants, and most scary, talking to women anywhere, everywhere. They changed the meds which seemed to help alot, but now 5 years later he’s at it again. He won’t accept he has a problem and insists on being independant, lives apart from his wife for months, on his own, which was ok before this. I could go all day on behaviors here, but thanks for listening. Hope to learn alot.

  • Terri Pettingill

    Is bad fatigue & Total loss of appetite part of the Frontal Lobe Dementia ; a part of the stages?

    • Griffin Mathers

      Ms Pettingill – Those are symptoms that appear in about a million illnesses. PLEASE go to your Doctor! This is not even supposed to be a message board, these are just comments on the article. Everyone please – see your Docs for such serious things.

  • Shelley

    My dear mom passed away in her sixties of FTD. It was brutal. She was the healthiest person prior to this. She was for about 2 yrs and needed constant care the last year of her life. Horrible disease. No medication helped her. She responded most to love. Just being held and hugged. So that is what we did. She was the best mom and miss her dearly. My advice is lots of love and redirect when the person becomes upset. Oversee their care very closely and music is calming to them as well.

    • bv(FTD)

      Thank you so very much for your advice, Shelley.

    • disqus_3cGzSmjopc

      My sister who is 15yrs older than me has it. I think it’s worse than cancer. So terrible to watch her not be able to talk or know who I am…..I pray the Lord takes her before she gets worse. Right now she cannot talk..she is only 72yrs.

    • Ashwin

      Plz i wd request u to help me ways to care and plan for my dad who has too FT dementia

  • DISPENSER4HIRE

    Nevermind.

  • Dana DiMarco

    Hello, my Mom started showing very discreet changes about 3 years ago. It started with excessive crying almost every morning. Friends/relatives told me it was just her depression, which she has always struggled with. Next, slowly but surely, issues with her gait, balance and an on and off tremor and some dystonia. I noticed her memory was off. Again, because the symptoms came and went, people told me I was being dramatic – but I know my mother! Now, 3 years later, there are days she can barely walk. and if she can, it’s with a walker. She hallucinates and some days she is lucid and some not at all. I took her to the so-called :best” neuorologist who made us wait forever for an appmt and then said she was fine. She is not. Unfortunately, she then got cancer. I had to take care of that first and foremost. I did hire a live in caregiver for her. Now that her radiation is over, HOW can I get a diagnosis??? No one seems to get anything back from all these tests (have had her hospitalized for confusion, etc)but you can plainly see she has dementia and it is progressing rapidly now. Thank you for any support or advice. as I am her only family and trying to educate myself. Dementia with Lewy bodies or Frontalobe seem very very possible.

    • bv(FTD)

      Hello, Ms. DiMarco:

      I called our city’s University Hospital, Department of Neurology and Psychiatry, because I suspected brain involvement well before he ran away from us. They were great. What I was so thankful for is that they didn’t require a referral from a doctor before seeing my husband. They took my concerns very seriously and scheduled our appointment as soon as they could which unfortunately meant waiting 3 months.

      • bv(FTD)

        I should also mention that I took my husband to Emergency a couple weeks after making the appt. because his behavior was so shocking I couldn’t wait. I pretended the appointment date was moved up but he wasn’t fooled and would not go in. It took everything I had to get him to see the neurologist after that misstep because to this day he thinks he is fine, I am the problem, and the doctor just wants his money.

        There was a very small window during which he consented to be seen. He told me, “Maybe I am fucked up in the head.”

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