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• November 22, 2009 9:40 p.m.

  My husband was diagnosed earlier in Feb. of 2008 with FTD at the age of 45. Prior to this he showed signs of forgetfullness 2 years prior. It seems since his diagnosis FTD has progressed rather quickly. Things he did over a 1 yr ago are extremely difficult. He cannot be left alone unattended. He was also on Aricept but he become extremely hard and somewhat hostile. He is a very gently person. He is now on Namenda and it seems it helps with being somewhat alert. His language suffers quite a bit and can't get the words out, and studders and gets overwhelmed easy. He likes to socialize but invades your space even with strangers which makes it difficult to be out in public with. He does it since his social skills have pretty much dimished. No one in his family has this, but has a maternal aunt that died of Alzheimers. He is pretty much a very animated person and is very pleasant, I am a grateful person for him to be this way. I was told probably since he didn't experience this hostile or angry personality as a child that he may not ever experience this. I truly hope so. He doesn't mind very much, and prior to us moving to a different state, he stayed at home a lot after diagnosed he'd get bored and take many showers a day. Though now it's different and he has many accidents and doesn't use good hygeine. He likes to look nice and dress nice though. He doesn't care much for sweets as prior to FTD he loved them and I understand that most FTD patients do. Anna

  - Anna

• November 5, 2009 12:24 a.m.

  To Renee: My husband age 61 has finally been diagnosed with FTD after an MRI, CT scan and EEG and cognitive testing. I've been fighting with him for 2 years to shower. He once went 28 days without one, he didn't think he we dirty. I now tell him the day before that he will shower tomorrow and I leave a sticky note as a reminder on the bathroom counter and at his breakfast setting so he sees it first thing in the morning. I lay out his clean clothes and underwear and he now showers every 4 to 5 days. I have to constantly remind him to brush his teeth and put on deodorant. If we are going out he does it more freely. I asked his psychiatrist just last week about Aricept and he said it works for Alzheimer's patients but it seems to make things worse for people with FTD so my husband is staying on Cipralex, 10 mg per day. It is an anti depressant and it has taken away all his hostility and aggression. It is also supposed to boost his mood but it may take some time to do that, which it may not.

  - Shelley

• August 14, 2009 11:14 a.m.

  My father has FTD. Getting him to take a bath or other form of hygeine is a fight. He is becoming more hostile to my mother. Has anyone else experienced the bathing issues and what have people tried with success? Has anyone noticed any improvement with Aricept for this condition?

  - Renee

• May 27, 2009 9:46 a.m.

  My husband's two sisters were diagnosed with FTD. One at the age of 58 and the other at the age of 62. His mother died at the age of 66 of ALS. He also has a cousin on his mothers side with Parkinson's. I am concerned for my husbands health. He is 55 and I am wondering if there is any way to get early diagnosis or preventive medicine for those who may have a genetic predisposition to having this disease. What should be be doing now to prevent him from getting this condition.

  - Kristi

• April 26, 2009 9:36 p.m.

  My brother is 40 years old and was diagnosed in July 08 with FTD. He is now in an assisted living facility and has adjusted quite well. I have found a wealth of information and support at the FTD support form at www.ftdsupportforum.com There are both FTD sufferers and caregivers who share information and support each other on everything from meds to venting about their trials. Sue L

  - No name given

• April 26, 2009 11:25 a.m.

  My 80 yr old hunband was diagnosed two years ago, and is in the moderate stage of alzheimers i think...but I haven't read any blog yet on his problem of not wanting to stay home at all. His ability to drive seemingly seems ok to me, but this has me puzzled. Should I start going everywhere with him and appease him? I can't call it roaming per se, but he wants to be in the vehicle going somewhere. Could someone please give me information on this? Thanks

  - marilyn729

• April 20, 2009 8:17 a.m.

  has anyone experienced their loved ones inablilty to distinguish hot from cold. do they lack the judgement to dertimine if something is hot/cold or do they lack the sensation? thanks

  - Laura

• April 7, 2009 8:17 p.m.

  My husband has frototemporal dementia,he is in the moderate stage.His dr. said place him on a waiting list for a nursing home,because it takes 2 years or more.He said this involves more behaivor problems,than alzheimers.Is this good advice?

  - maryanne sakihara

• April 2, 2009 9:24 a.m.

  I have never posted a blog before but am finding myself utilizing the computer more and more lately in an effort to I guess save my mother and my family. My mom is 58 years old and was recently diagonosed with FTD. No family hx no markers that I have been reading about. She is the second to the youngest out of 13 both parents living into late 80's no grandparent hx. Lots of alcoholism, live on a dairy farm all of her life. Hind site such a blessing. I began noticing my mom's forgetfullness 1 week after a total hysterectomy. I was just wondering if anyone else has noticed this occuring or if there is any established link or research into the abrupt withdrawal of estrogen and dementia. My family is falling apart. due to moms age she is not eligible for a lot of services. I am scared every time that I forget something or misplace something that I am developing symptoms. She has been on Aricept and Namenda still the disease is progressing rapidly. This is hell on earth.

  - Laura

• March 3, 2009 7:41 p.m.

  My mother at age 63 may potentially have FTD. She exhibits the symptoms; confusion, speech problems - mixing up words & thoughts, agression (which is not a normal characteristic of hers), sometimes thinks that my sister & I are friends and not her daughters, mixes up our names & does not always recognize her grandchildren when referring to them by name. She is not able to write a check, pay her bills, and often will make very strange combinations of foods if left to make her own meal. I get nervous because sometimes she will be talking to me, but staring at something else & actually not blinking, not recognizing that I am right next to her. She sees people in her house all of the time. We try very hard to mitigate any of the 'triggers' that may cause a frantic episode of mistrusting me & my sister and running around looking for things/papers/documents that she misplaced & that really have no relevance to anything important, but I am tired of the mood swings and I just want my mom back. She is uncooperative with Dr. visits and closterphobic, so we only have one CT from a yr ago that I have heard Drs. continually say 'unexplained white matter' in the brain - that combined with the behavior is what leads the Geriatric Psych to think it is FTD. I am wondering who else out there is a good source of information & help with this type of problem. I feel that we get a run around and no one really knows much about her condition and can help her appropr

  - Chris

• March 1, 2009 8:39 p.m.

  Please tell me what types of symptoms occurred in FTD. My sister in law talks in repetitive words, whatever she is concerned about at the time. She is also an obsessive eater and drinker, especially coke, tea, and sweet foods. She remembers what is said to her, but will still repeat and ask again. She has no emotions about anything except eating. She has been about the same mentally for 1 1/2 years, does not seem to improve with medications. Got worse with risperdal, seroquel, haldol, and cogentin. She can still do math figures, even in her head. Knows how to right a check, and is deceptive and sneaky when she wants to do something. Does this sound like FTD to anyone?

  - Vicki

• February 24, 2009 8:03 p.m.

  My husband has dementia - also a severe aortic stenosis. He has a bi ventricular pacemaker and defribillator. Would aortic valve surgery affect his dementia? Should he undergo the operation? Would it help his dementia? He is 72. Ellen

  - Ellen

• December 31, 2008 1:36 p.m.

  Earlier this year I was diagnosed with FTD. I am 30 years old and had a right temporal lobectomy 11 years ago. I was just wondering if this is normal for this to occur this many years later?

  - Kara

• October 20, 2008 9:55 p.m.

  My husband, age 61, was diagnosed with bi-polar in 2002 and has progressively gotten worse. I never could see the ups and downs of bi-polar but he has had extreme difficulties figuring out how to do things and was very disorganized. He has lost a number of jobs due to this. This summer he got very argumentative when he was reminded how to do things correctly. It was like he couldn't figure out how to put things together which he had done all his life. He refused meds or to go back to the doctor for further screening and now, after 40 years of marriage, suddenly left home one night and moved in with a woman acquaintance. He is a caffeine-aholic, too. Now they are telling me at his psychiatrist's office that he probably has FTD. Anyway, I wanted to advise anyone who has a spouse that is exhibiting these symptoms to be aware that your marriage may suddenly be on the rocks when his/her personality changes. We should have pursued help for him more aggressively earlier on but one just doesn't realize why all the ridiculous behavior and the ill person thinks they are fine. I didn't even hear the words FTD until too late. If anyone has any advice for my situation (he has been there for a month now) please respond. Thanks.

  - Rosa

• September 13, 2008 2:24 p.m.

  My 73 year old husband was diagnosed with FTD 2 years ago.When I learned more about it (AFTD is a great resource for education!)I realized that some of the odd behaviors I had observed for the previous 2 years or so were early symptoms, an "aha moment" for sure. His symptoms are thankfully not socially unacceptable at least so far but his include stiffness and instability walking (he says his feet don't do what he tells them)and he tires of walking after about 3 short blocks. He has a great deal of trouble with language; for instance, he was an ace crossword doer and now has quite a lot of trouble with the easier ones. This is sometime caused by his misspelling an earlier word...interestingly that word may be similar to the correct one. He cannot do what is known as Executive Thinking any longer. Were we to discuss more than one related topic, he mixes them up and just can't get it straight. His long term memory has big holes and short term is pretty non-existent. It appears that he Can learn if we work at it. For instance, I put my cell phone number on speed dial and so far he can remember that. He is still driving and I go with him at least once every week or so to be sure he's still safe. I know losing his license will be a huge blow. His personality has changed quite a lot. He's still very nice most of the time but the relationship we had for 30+ years is more like acquaintenances most of the time now. I miss spontaneous signs of affection!

  - Joanne from Oregon

• September 4, 2008 10:28 p.m.

  usgh!!!!!! AS YOU CAN SEE..i mean FTD,,,i NEED HELP, i DON'T KNOW WHAT I HAVE , IT SCARES ME, I NEED TO GET A HANDLE ON THIS THING! PLEASE HLPE ME

  - DEBORAH k hARD

• September 4, 2008 10:25 p.m.

  I am sorry, as you can see I am very inexperenceed about all of this, I was diagnoased with FDT, just wanted to make the correction...........

  - Deborah K Hard

• September 4, 2008 10:18 p.m.

  I just stumbled accross your web sight, I was just recently diagnoised with fld, although have sufferever for at least six years prior....I know abousolutly nothing about this, please someone tell me what to expect so that I may prepare, please,thank you, Deborah K Hard

  - Deborah K hard

• August 15, 2008 6:21 p.m.

  It's been two years since my father passed away. His journey through dementia lasted approximately eight years, and we were fairly certain that he had Alzheimer's disease (much like his brother, father and grandmother before him). My brother, sister and I decided to have an autopsy performed following my father's death to confirm his dementia. We know that our fate is probably set, but for our children and grandchildren, we wanted to know for sure. The autopsy did confirm that my father died of "pneumonia as a complication of Alzheimer's disease." However, because of the guidance of my father's pathologist (and long-time friend), we went the next step to have his brain harvested and sent to the Harvard Brain Bank for research. For this, we will be forever thankful. After several months, we received the final report that confirmed by father actually had Frontotemporal dementia. This diagnosis explained so much about my father's behavior and symptoms throughout his illness. Clearly, he had exhibited signs of dementia, but his behavior didn't always fit the classic AD description. Now we know why. I encourage everyone to consider donating their brain - make arrangements now, and let your family know.

  - Diana

• July 5, 2008 1:16 p.m.

  My father is 86. His behavior became bizarre. He was diagnosed with FTD through mental evaluations and brain scans. We have letters from two doctors putting our POA into effect. We believe that he has had FTD for a long time. My mother kept saying that he was making stupid business decisions, etc. He was still working (self-employed) and $200,000 in debt when diagnosed. He had a base IQ of 150, which is problematic. He is so good at conning people. He gets them to help him in his schemes to go behind our back. We have to constantly stay one step ahead of him. The attorney says that we have enough information to take him to court and get guardianship. But, we hate to do it, and keep trying to use our POA to handle things. He has enablers who tell him how to do things. He recently bought a prepaid cell phone under an assumed name. Are there any assisted living facilities that specialize in FTD. He still has his memory intact, and would go crazy in an Alzheimer's unit. My sister and I are exhausted!

  - Anastasia

• June 20, 2008 11:32 a.m.

  My husband is 51 years old and his symptoms are "consistent with frontotemporal dementia". Our story is much like all who are suffering with this devasting illness. There were years of running to specialists, testing and begging for advice, referrals and a diagnosis. Now we pray for a miracle. Please visit the AFTD website. The information and resources are invaluable.

  - Carol

• June 18, 2008 12:38 p.m.

  I am wondering if anyone is utilizing something like Valium for high "manic" periods? The meds we use daily are Clozapin 4X/day & Buspar 3X/day; also Namenda & Exelon from pre-FTD diagnosis days. However, pacing is the activity of high "manic" times. He paces every afternoon and sometimes the pacing goes on for 3-6 hours. During good weather, I have incorporated a long walk into our routine during the pacing times - this helps but does not stop the activity once we arrive home. The pacing also includes an inability to sit or rest during these times. While he tries to stay seated, even during meals, it looks like "jack in the box". Eventually the evening Clozapine (200mgm) kicks in & he falls alseep, exhusted.

  - Georgie

• May 7, 2008 7:41 p.m.

  My husband was diagnosed with FTD 5 years ago, his behavior was so impulsive and his personality completely change and he started acting out. The physician put him on Risperdone. The medication has helped, buthe is certainly not the person he used to be.

  - Susan

• April 23, 2008 11:06 p.m.

  I am wondering if FTD could cause a person to sexually abuse a child. Has anyone had an experience like this?

  - Diane

• March 14, 2008 6:15 a.m.

  My husband, 66, is now in a nursing home, undiagnosed but seems to fit FTD/MND. He also drank CocaCola all day long. Interesting. And suffered chronic back pain all his life and severe leg pain that last few years, progressing through the hierarchy of pain meds. Fell into a coma one night and came out of that but never recovered enough to live at home again. The disease is now progressing rapidly; aphasia, unable to swallow, profound muscle weakness.

  - Christina