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


        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.

          • Elle Vetica

            Recent research indicates that a deficiency of L-serine (an amino acid) is implicated in ALS and Alzheimer’s. Intestinal inflammation/leaky gut syndrome can be repaired with another amino acid, L-glutamine, which can improve the gut microbiome–this is also important.

            Here are some links for anyone who’s interested:




            P.S. PubMed is free and a good way to organize and remember articles for reading and research. Scientific articles aren’t exactly light reading, but they contain genuine information not watered down by stupid bloggers and website trying to sell you stuff.

        • Pat Sparling


      • 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)


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

          • bv(FTD)

            What if the proteins that misfold are the first line of defense to whatever is attacking the brain?

            It is now understood that the disease begins long before behavioral irregularities emerge (as in Alzheimer’s: once memory slips, the brain is compromised). So I think the body was engaging in a ferocious, silent war for quite some time, sending in first the combatants but ending with last-line defenders (serotonin flooding).

          • James wolfe

            Wife is 59 years old easy too look at and easy going I thought ! found out she was banging her cleaning client since 2009 every other Wednesday. !!! Started doctor in her 2015 anxiety ?? Admits sugar daddy affair but has no emphathy married 42 years she is still here and I am her caregiver WOW her sugar daddy who is 73 now is sitting in Allentown laughing it up !!!! Mfr. Wow

          • bv(FTD)

            Dear Mr. Wolfe:

            I am so very sorry that you discovered she’s been an adulteress since 2009.

            At least now you know.

            I’ve visited infidelity sites to inform traumatized people their 40- or 50-year-old spouses who suddenly went wild may be very ill, but have discovered that many exhibit the same signs of FTD: Immoral behavior, selfishness, wild spending and even criminality.

            The dysfunction of brain networks must be similar.

            I was stunned at the neurologist’s office in the first few minutes. My husband could not draw a clock right.

          • bv(FTD)

            Mr. Wolfe:

            Your wife was diagnosed shortly after her infidelity so at least you know her behavior was due to the disorder.

            I think many of the right temporal lobe disinhibited people aren’t getting diagnosed because so many of them abandon the family and disappear.

            I was telling an attorney my story who said he had just finalized a divorce of a woman whose husband of 33 years – a great husband and dad – jetted off to Thailand one day to marry a prostitute he had met online, obviously leaving the family absolutely wrecked.

          • bv(FTD)

            I wonder if Gauguin had FTD: He left his wife, 5 children and stockbroker job to pursue his obsession with art, and died of a heart attack just before he was to be jailed for failure to pay taxes. He painted a lot of unclothed women and self-portraits which changed drastically over the years.

    • 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.

    • Pat Sparling

      Sounds like my life! Husband of 53 years walked out with our 2 youngest daughters!

  • 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.

    • bv(FTD)

      I forgot to mention 2 other very important early signs to look out for:

      (Sensory Overload) – We went to a music festival we had always enjoyed attending but as soon as we arrived my husband said we had to leave. I said we just got here. He screamed, “Are you coming?!” then tore off into the crowd, barging into people and knocking into tables and chairs. I thought one guy whose wife my husband slammed into was going to deck him. My husband calmed down once we got home.

      (Concrete Thinking) – My husband did not understand when someone said, “That’s like night and day.”

      • bv(FTD)

        I think my beautiful husband sensed something bad was coming for him. Two years before he ran away he had us draw up our will, he bought me an exquisite diamond ring, and he very gently told me out of the blue, “I may not be around for for much longer.”

  • 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.

      • bv(FTD)

        Good advice, Mr. Mathers, except that many doctors have no clue about this very serious disease.

        My husband is still smart, articulate and able to function, but he has destroyed our family, our business, and, we believe, recently married an escort in secret.

        A doctor would see my husband and declare him fine and fit. Our neurologist, however, did not.

        This board, and other sites, are trying to alert people to the bewildering early behaviors since most of us think dementia means memory loss in the old, NOT drastic and disturbing behavioral changes in the prime of life.

  • 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

    • James wolfe [email protected]

      I will try thanks



  • 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.”

    • Mark Story Jenks

      I feel very bad for you. Keep the faith, know your worth, and trust in Gods help. I’m not even a religious person, but I think faith might help you a lot.

  • bv(FTD)

    By: bvFTD, Rose of Sharon:

    I would like to add that people in EARLY stage FTD do not appear sick! They are articulate; their memory and intellect are intact. There is the belief that people with dementia loll around in wheelchairs, drooling and completely out of it, but that impression is false.

    My husband can discuss with you all day long superficial topics. He can conduct himself fine throughout the day. But he is gone. People who did not know my husband before he took ill would never guess that he has a terminal disease because they have no idea that the man I was with for 30 years no longer exists.

    A fascinating coping mechanism of the disease is their ability to “mask” their symptoms from nonfamily so others have no idea what we (usually the spouse) endure. It must take so much effort for them to maintain in front of others.

    • bv(FTD)

      Signs and Symptoms #5: Repetitive Compulsive Behavior.

      Look for this sign: My husband grew very restless and distant and started disappearing. When he was home he refused to have meals with us. Instead, he sat in the living room watching television, doing Sudoku and tapping his foot in quick staccato while rubbing his knee.

      Later, he started snapping his fingers as he talked and ending each statement by opening and closing both hands like parents do when they play hand puppets. He also slaps his thigh 4 times and rocks back and forth if he has to sit in a chair.

      • bv(FTD)

        Please help us get the word out to companies, family and criminal courts and to society.

        Some of our spouses divorce us at onset and appear to be okay, but we know they are not because our soulmates and best friends of decades suddenly turned viciously against; however, few people believe our accounts of the startling antics because the person with ftd can mask the symptoms.

        Even our attorneys won’t believe us until the person with ftd makes what should be a “run-of-the-mill” divorce complicated and messy, derailing it over and over again by shocking, unreasonable demands.

        Later, the spouse is fired by his employer so the alimony and child support the wife fought so hard for ends.

        If companies held ftd awareness workshops (as they do for sexual harassment, which I am sure ftd is responsible for a percentage of sexual harassment claims) to alert people to the behaviors, perhaps these poor people can be urged to see a doctor before they are fired and finances ruined. I have to tell you many of our sick spouses turn on us so we cannot get them to seek help because

        • bv(FTD)


          they scream that we are “mental” when we shakingly suggest they see a doctor.

          My husband was diagnosed before he divorced me. Our children are teens and young adults and are aware he is unwell and are fine with him, but I shudder to think of ill parents who are taking care of kids, and especially little kids when no one knows they are sick.

          Family courts have got to learn about this disease and create some sort of streamlined “dementia divorce” option that protects the family and their future well-being.

          This horrific disease is much more prevalent than once believed.

          • Rebecca

            Help! I just came across your group after searching for answers. My husband is 55, I am 44, and we have been married 21 years. In the last 5 years I have had to deal with past trauma and I know now that I have mild borderline personality disorder. My husband’s personality has changed of late, (but in public he is so charming and caring, he really works a room) he did many drugs before I even met him he was an addict for 15 years from age 15-30. He recently packed up all his belongings while i was out with my daughter and left me and our kids (aged 17 & 19) he hasn’t told us where he has gone to live it has been 5 weeks now and he takes $1000 cash out of our joint account every 4 weeks. If I am lucky enough that he answers his mobile, he is SO ANGRY when he talks to me, no empathy for the things I have endured, I must add we came out of a religious cult 5 years ago and he was totally controlling of me and the kids. I have since been going to the gym for 2 years and made myself strong, I stood up to him even physically and now he leaves. I am heartbroken and have been with him since I was 20. i am so scared for the future, he has a narcissistic mum & sister and I am frightened for the future. The irony is we only just started to recover our finances after being drained in a cult for 18 years. I am so tired and disheartened and he won’t listen to me he just hangs up on me almost every time we speak. He is angry at our daughter because she doesn’t respond to the three texts he has sent her since he left and blames her (she doesn’t know what to say to him as he is superficial and doesn’t want to talk about the deep stuff) she is seeing a psychologist and is also very unwell.He tries harder with our son (17) who is out and about at college handing him cash and offering lifts etc. I have said sorry for criticizing him in our relationship, I was angry about the previous physical, financial & psychological abuse he inflicted on me in the cult. My husband says I have abused him for 23 years I don’t think that is true, I can’t get him to go to counselling and It is very upsetting to see what this is doing to the kids, we are a family torn apart. I wonder if this frontotemporal thing is what he has, he has made some really bad decisions over the course of our marriage one where he sent off $24000.00 to nigerian scammers, his memory is terrible and he was taking things from the shed the other day and said “Liar!”to me because I needed his key, I walked off, came back 5 mins later and said that wasn’t a nice thing to call me a liar, and he said I didn’t say that, get it together. He didn’t even know what he’d said to me, I don’t know whre to go or what to do next. Rebecca

          • bv(FTD)

            I’ve read different estimates of the number of people with the disease varying from 60,000 to 250,000. Other researchers believe there are well over a million people with the disease, most of whom are never diagnosed.

            I think once society starts recognizing this disease and doctors start correctly diagnosing people, the true number will be staggering.

            Some patients with FTD are extremely difficult to care for. The burden placed on families is too high. We should be building facilities dedicated to taking care of the patients with their unique requirements: Large indoor and outdoor roaming spaces; special rooms designed to indulge their utilization behavior; quiet resting areas, etc., funded by the government.

            Many of these formerly hard-working, upstanding people who lived responsible lives will not live long enough to collect social security. They deserve money spent on them to make their last years as dignified and peaceful as possible.

          • bv(FTD)

            I want to apologize for using the term, “roaming” to describe areas I think we need.

            To me, that sounds kind of dehumanizing.

            I think we need large indoor and outdoor visually appealing walking paths. Art and music rooms. Maybe even an area with slot machines.

            Ask other care partners and the people who know best: People with FTD who can teach us.

            We must start preparing now for what is coming.

          • bv(FTD)

            Another Early Sign:

            My husband started sleeping fretfully. He went from the bed to the couch to a guest room, then back to the couch.

            He started sleeping so badly that he flailed his arm and accidentally hit me in the face a couple of times.

            The first question our neurologist asked my husband was how was he sleeping. My husband lied and said perfectly fine.

            Dear Readers: Do not ignore your intuition if you feel something is very, very wrong. You know best.

            Love and Strength to you.

          • bv(FTD)

            Two months before my husband bolted he woke up with dead eyes and an expressionless face. Now, I am wondering if “Invasion of the Body Snatchers” was written in an attempt to make sense of Pick’s. I am also musing that people may have actually thought their family member was “possessed.”

            My husband stopped calling me every single day from work to simply ask how my day was going, and to say he loved me. I called him, but he testily told me he was busy working. I knew right then and there he was gone, but how to convey to others that such a seemingly little alteration in the easy and sweet routine of a 30-year beautiful relationship was profound and cause for ALARM?

          • bv(FTD)

            I have described just one presentation of FTD, which is why diagnosing the disease is so confounding.

            Please pay attention to subtler onsets such as enthusiastic collecting crossing the line into “hoarding,” an extreme form of environmental dependency, or to once savvy relatives who suddenly start falling for ridiculous scams.

            The main sign of FTD – its most heartbreaking one – is the disconnection from you and everyone.

            My husband told me 7 weeks after he moved into his bachelor pad that he was, “So Alone.” Can you imagine the desolation?

    • Diane Termonen

      My husband “masks” very well when around others, but he makes sure that he has little contact with anyone but me. The man I married no longer exits. It is so hard to watch the one you love disappear. Now he is mean to me and shows no apathy about anything, not even when my younger sister died suddenly. He spends most of his time outdoors walking or running, or laying in bed reading. I miss him. 🙁 We do not have the diagnosis because he began refusing to go for anymore tests or to see any doctors for anything.

      • bv(FTD)

        The terrible problem with this brain disorder is that it destroys the part of the brain which senses there may be a brain disorder!

        I hope your husband’s work was able to convince him to seek help.

        Wouldn’t it be great if there were “Neuro Emergency Units” we could call disguised as plumbers or electricians we could tell our spouses were checking out problems in the house, but would be surreptitiously checking them out?

  • Mark Story Jenks

    I’m screwed.

    • Young man from Europe

      Me too. I’m pretty sure that i have some kind of dementia that affects mostly frontal lobes in the beginning. My symptoms match Primary Progressive Aphasia, but i’m not sure whether it’s the right diagnosis for me. (I had a couple concussions from accidents when i was a child. (not related to sport)) Few years ago i started having trouble with expressing myself.(Never had any problems with that before and didn’t have any problems in the school. I was actually a quite good student, although i certainly wasn’t the most motivated student when i was younger. (But neither was i sb who doesn’t learn at all and skips school.) I had good grades and was good at math. I also was a top athlete when i was younger. I won championships of my country many times and did well at international competitions.(also participated in world youth championships)) I thought that it was normal, because i’m also living abroad and haven’t used my mother tonque very often in recent years. Ofcourse i have followed the news by reading the news sites, but communicating in my mother tonque has been minimal. I also see changes in my english skills and in the skills of the language that i use daily. When i pick one language and use it more and focus on it a lot, then it gets better, but still after i use it a bit less for some time i right away notice that it gets worse again. Very often it’s difficult for me to find right words that i want to use to express myself and i also struggle with grammar and other stuff. Making longer complicated sentences is harder for me now. (i can still make them quite well, but i often get confused when making them. It feels like i’m slowly forgetting how to use the language. I still know what’s the right grammar, but using it makes me still confused often. It feels like that “the signal” in the brain that tells you: “This is the right grammatical option.” is weakweaker. Also i always know what i want to say, but i just often can’t find the right words.
      ~3 months ago i also started noticing memory loss that has continued. Nothing super serious, but serious enough. For a person like me it’s definately not normal.(I’m under 30.) Had some minor problems with memory already in the spring and in the autumn 2017, but those were very minor and happened only a couple of times. Those moments felt weird, but i still didn’t think that they were symptoms of sth very serious. In the spring 2017 i also noticed that l have more problems with the language that i have been using daily for many many years when living abroad. I thought that it was because i didn’t use it very often before that for a month. (I had a little injury. Because of that i wasn’t very active for ~ 6 weeks. I spent most of my time at home.) In 2016 also sometimes. I always thought that maybe the reason for that was lack of use or just everyday stresstiredness and lack of sleep. I also have some other neurolocigal symtoms. It wasn’t until beginning of this year that i finally realized that sth is terribly wrong with me. (Memory problems started to occure morw often.) I’ve been to doctors and had an MRI of the brain done too. Neurologist said that MRI picture was totally fine and said that most likely it’s caused by stress ot sth else and said that maybe i should visit a psychiatrist. (Ofcourse they at first send you to Psychiatrist if you’re a young person and they don’t find anything “too serious”. I had no choise but to agree ofcourse. (Haven’t seen the psychiatrist yet.) For 2 weeks i was actually hopeful(but still scared ofcourse) and thought that maybe after all i’m not f*cked, because doc said MRI was ok. Thanks to doc for those 2 weeks. But after ~ 2 weeks the letter came home with the info of my visit. There is written that MRI picture is “absolutely fine”(no tumors, etc..), but there was also a sentence in the ending that said that there are small “non-spesific” t2-signal hyperintensities(lesions) in the white matter, mostly in frontal area of the brain.. That’s bad news actually. Those are not normal findings in a younger person’s brain. Those are found in the brains of older people and in brains of people who have some kind of neurological disease or some kind of infection in the brain etc. When i analyse my history of symptoms and MRI results, then it’s obvious that things aren’t well unfortunately. F*ck. I’m going to be really honest with you. I can’t live like that and don’t want it to progress any further. I’m going to kill myself very soon. Sorry for a bad grammar, mistakes and cursing. I don’t really give a f*ck right now. Good luck to everybody!

  • lilmoomoo

    My dad was diagnosed with dementia about 5 years ago. The main signs were he forgot how to get to the bank and back. He did stop at a gas station for directions. He worsened as time went on, forgetting phone numbers, paying bills, staying up at night, etc. He even forgot his best friend passed away the month before and tried to call his house to see if he wanted to go out and play golf. He would lick plates clean and use his spit to clean dishes. He ripped his sleeves to make holes for his thumbs so his sleeves would stay down at all times. He ripped up family pictures so you could just see the piece with his face or profile only.

    In the most current year, his attempts at conversation are poor. They are strings of words, some made up, that have nothing to do with the topic at hand. He feels no emotion when we talk about birthdays, holidays, anniversaries, etc. My dad yells when he doesn’t want to leave the house or screams when he bumps his knee on a shopping cart, trips on a curb, or a door slams shut. Now he is pretty much confined to home and has fallen multiple times. I just wonder how it will all end. I hope in his sleep but most likely it will be due to a fall…

  • James Wolfe

    Wife of 42 years sleeping with 64 ear. Old man @ 50 , 8 years now diagnosed with ftd now what !? Totally admits it absolutely no remorse or apathy could simply give two shots about my feelingIs I fucked up what do you want me to do , cried about ten minutes I been crying 5 months ! Ruined our family and has nowhere to go ! He is married w.t.f.

    • bv(FTD)

      Dear Mr. Wolfe:

      My words are going to be cold comfort, I know, but at least we have hearts that can be stomped on and mutilated. What must if feel like for them to have lost their souls?

      Stay strong, Sir. They would still love us if they could. My husband fought mightily to hold on, I now realize. I still marvel at his determination to try so hard to keep his feelings alive for us, at his sheer strength of will. But he lost.

      • bv(FTD)

        Mr. Wolfe:

        I don’t think other people understand the agony of this disease unless they’ve been so rudely and unwillingly introduced to it. FTD rips apart families and shatters dreams. Please, do not hesitate to ask for help from friends, family, medical professionals and support groups to see you and your ill wife through this vile disease. Take care.

        • Jameswolfe

          Thank you

  • worldbeat99

    Hello everyone. I am a new professional caregiver. My first client has early dementia. My new client has frontotemporaral dementia who I will meet tomorrow. So I googled the illness and came here. I didn’t know this dementia often affects people younger who are in their 50s. Reading all these stories, I have a lot of empathy for those family members go through this. Such drastic and puzzling behavior. I’m looking forward to meeting my new client and I hope I can be a good companion to her.

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