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  • Oct. 9, 2007

    Frontotemporal dementia comes to fore

    By Angela Lunde

56 comments posted

I am finding your stories compelling, full of insight, experience, pain and compassion, and I am pleased to hear how much you appreciate reading the stories of one another.

In a previous posting, I mentioned that there are many forms of dementia, and although Alzheimer's disease accounts for 60 percent to 70 percent of cases of dementia, other disorders that cause dementia include: vascular dementia, Parkinson's disease, dementia with Lewy bodies and frontotemporal dementia.

In the early stages of these diseases, there can be some clear distinctions between each of them. However, late in the disease all dementias appear more alike than different. I bring this up again, because some of you may have seen news stories recently of U.S. Sen. Pete Domenici of New Mexico announcing his retirement because he has been diagnosed with frontotemporal dementia (FTD).

Sad proof yet again, that dementia knows no bounds of status, ethnicity, or gender. There are so many ironies in this disease. In this case the irony is that Sen. Domenici worked so hard for many years for mental health parity, in other words, equal attention and treatment of mental and physical disorders. Now he appears afflicted with a form of dementia that will initially affect his personality, reasoning, and maybe his language but eventually all areas of mental functioning. As with all of you, our thoughts and sympathies go out to the Domenici family.

56 comments posted

blog index
  • January 26, 2012 12:31 a.m.

    My mom , age 68, was initially diagnosed with Alzheimer's about 4 years ago, but was found to in fact have FTD less than 2 years ago. Much of her short term memory is going and her mood swings have become violent. Dad, her caregiver, recently made a decision to have her enter a full- time care facility and is in the process of doing that now. I support his decision since his own health is at risk now. I've been reading other stories in here of what each of you are struggling with, including care struggles, money issues, and depression. My thoughts and prayers go out to each of you (as well as to the Domenici family). Keep your chins up and know that you are never alone.

    - Carl

  • January 23, 2012 5:55 p.m.

    January 22, 2012 6:23pm My husband suffered a TBI injury in 2007. He never recovered and I have taken on the role of a caregiver, I am fortunate and am still able to work. Initially his mood and behavior wasn't affected, as time went on he became verbally abusive, and has no tolerance at all with children. He is unable to tolerate social situations and I am a nervous reck to take him out in public because he will shout obsenities to people he may or may not recognize. Family does not visit, I am becoming fatigued and have found that his physican lacks concern. Medications were prescribed and made it worse. I have found mental stimulation is more benificial. However there are no local resources directed to TBI. Initially his short term was effected, however, now he is loosing long term memory. We seem to have one good day and then a bad day. I am thankful for the good days, but honestly, I pray alot and like everyone else, take one day at a time.

    - Christi

  • September 29, 2011 2:25 p.m.

    Hi- My heart goes out to you! I just had an episode with my mom last night - we've taken my parents in- she got up and wondered who the man was in her bed and she wasn't going to sleep with him. She said she questioned who he was when he went in the room, and he laughted at her. That's what set her off. She was on the way to the door, calling my name while I was coming down my stairs from the upper level- she said she might have gone out the door. She has dementia. We sat and talked, she called my sisters. I took out family pictures to "bring her back, and after about 1.5 hours, we were talking about how sometimes men have "issues" and how they are often times "Insecure" with themselves so that's why they need to laugh at what we say - when they don't understand us,or are insensitive without realizing it. It helped her.My situation last night is totally different from yours, but I'm wondering if you show him pictures - would it bring back any good memories of family or the 2 of you- or even of just himself- leave yourself out of the picture at first, especially if he's not even realizing you are his wife (and a wonderful one I'm sure he'd say if he knew what he was doing!)If he can get onto another track in his brain, you could be alleviated for a time? I guess it's worth a try-just remember how special you are, get respite from people to come in and help, and to give you breaks- you really need to take good care of yourself right now!! I'll keep yo

    - Mary

  • September 22, 2011 11:01 a.m.

    My husband is in the early stages of alheizmers. He is a heart failure patient, is a type 2 diabetic and has blockages in the back of his head and in his left leg below the knee. I can't trust him to drive or to be alone in the house. He gets angry easy and has been shop lifting whenever we go anywhere. I can't turn my back for a second. it is very hard and frustrating as I see my wonderful husband deterioting and it is breaking my heart. I have been a caregiver before for my Mother, who has sinced passed away,but this is much worse. I struggle everyday to keep control of my feelings and to still have some time for myself. I don't know what I am going to do. He does call me names and threatens to leave me on occasions. He says I am a b----. On well. anybody have a suggestion. There are a lot of other things he is supposed to be doing but refuses to do. Help

    - Helena

  • September 8, 2011 9:05 p.m.

    I would appreciate more information on symptons of frontotemporal dememtia. My husband had several small strokes within the last 15 years and one caused him to loose the use of his right side, speech and mobility for several months. He lacks emotion and doesn't always think of safety when working with electrical tools.. I've learned how to speak without harsh words but sometimes his anger surfaces to the point that I can't reason with him....anyone out there with the same situation...thanks

    - Lee

  • August 24, 2011 3:46 p.m.

    I lost both parents to different forms of dementia -- mother's was diagnosed as FTD, daddy's never actually diagnosed, but it was dementia. They were living in a big city, in their own home, my father was driving (he had a routine so he could find his way home), carried a lot of cash with him. My husband and I finally had to move them to where we lived, about 60 miles away, and put them in assisted living. Daddy could no longer take care of my mother and she was never getting out of bed, very poor hygiene, not eating right and had Type 2 diabetes that was getting out of hand. It was when we moved them that we discovered daddy was actually worse than my mother. She was very passive. He became extremely aggressive, cursing, paranoid -- the classic symptoms. He wouldn't listen to me at all, but he would do what my husband asked him to do. My father was a brilliant man, college educated, career military officer. His behavior was completely out of character. As I was preparing to move them to a memory care facility, my father got sick and died. Three weeks later my mother died. I felt as though my life had been taken over. It was two years of living hell, but I miss them very much. They died in early 2007, so it's been four years. I think I know what I will face when I get older and my husband and I have already warned our sons (husband's mother died of Alzheimer's). As a family member, you're never prepared for what you will face.

    - Anne

  • July 29, 2011 8:32 a.m.

    51 yr old male with Early onset Dimentia. I have tried to turn everything into a habit so nothing involves short-term memory. Drive a new car so I can remember everything in it before I lose it all. Live in a simple apartment, again to form habits or daily rituals. But I can't focus on anything, or remember why I'm opening a cupboard, etc. How quickly will this progress? This has affected everyone in my father's family, and he died of Pneumonia resulting from Dimentia. Anyone else?

    - Michael

  • June 26, 2011 8:30 a.m.

    My husband is currently in hospital with problems relating to FTD. He is 64 and had been displaying odd behaviour for over 20 years. He was just too laid back. couldn't focus on things and in general just gave the impression that we had the problem not him. He was diagnosed incorrectly with Alzheimers in 2006 and has now had a relapse resulting in a huge downward spiral. I've cried for the last two weeks and now feel numb. I've lost the love of my life and now that he's in care I will have to find a job at age 61. I lose my pension in about 5 weeks so the job I had to give up to care for him would have been my last job as I thought I'd be there till retirement age. This illness has destroyed the love and affection he had for me and when he sees me now all he does is swear and scream at me. I don't think anyone who hasn't gone through his could ever understand that kind of heartbreak. I still don't know when this nightmare will end. God help me please!

    - Ann

  • May 5, 2011 6:50 p.m.

    My father was a heavy binge drinker for many years. That increased. At72 he started having mini-strokes.He moved 2000 miles from any family.He had poor judgment and told neighbors and such about financial matters and his savings, etc. He was also sexually inappropriate with all ages and sexes. By 74 he developed negative gram spinal menengitis while living alone and was found unconscious after two days on the floor "cooking" in an electric blanket. He was in a critical condition and completely paralyzed for weeks except for ocassional cursing at the top of his voice! He was not expected to live. He did ! And for FOUR more years - but in a nursing facility. After 18 mos he was finally able to walk (rather unbalanced),talk, continued to drink and smoke when he could do it, and paranoid to the point he believed even the nurses were "out to get him". We found an open 7" jackknfe hidden in the closet. Also found over $250 hidden altho he claimed he was always broke. Whe confronted he was physically violent towards family members, nurses and even his doctor. He was diagnosed by three differeent physicians as DEMENTED, but we could never decide if Alzheimers was part of it...or mostly alchohol damage and strokes. I will forever regret NOT insisting on an autopsy after he died to determine what his brain disease was. He had an enormous will to live or would have never survived that long.

    - PAM *

  • May 4, 2011 6:55 p.m.

    there isn't much out there about FTD. My husband my first diagnosed as having alzheimers (4 months after my mother died who had Alzheimers). however I was not convinced it was alzheimers due to how my husband was progressing. It robs me of my husband piece by piece, is there not more information out there to share.

    - kathy

  • May 3, 2011 9:28 a.m.

    I know the frustration of living/caring for my husband who had Picks Disease. There is so much information out there about Alzheimers but very little about the other Dementias.We're told the end result is the same but in the early stages, in younger people, we need more information, more guidelines for care. Families are destroyed by these diseases because, only if you are in every day contact with these patients do you observe the subtle changes. Outsiders do begin to think there's something "wrong" with you. My husband passed away after 10 years and finally the family believed me when I said "something is wrong".

    - Carol

  • May 3, 2011 8:43 a.m.

    Dear Rosa My husband, age 59, was deteriorating for about five years. Looking back I wish I had realized what was going on. He suffered a severe head injury years ago and there is also a family history of dementia. At the beginning the signs and symptoms were so subtle I thought perhaps it was a bit of a mid-life crisis. Then there were problems with remembering appointments, etc., but he is very intelligent and was able to cover up many of his lapses. He left me suddenly, just as your husband did, without any warning, telling me I was abusive. Now it has become a marital issue and there is nothing I can do to help him. This past year has been a nightmare and he is still undiagnosed. He has broken our family, hurt his children and has destroyed our finances. He is now constantly forgetting and cannot manage his money, but tells the children he is destitute because of me. Doctors need to be more aware and listen to spouses. It would have helped if we had the same doctor. My heart goes out to you Rosa. There seems to be nothing we can do at this point. I will keep you in my prayers. Has anyone else had a similar experience or have any suggestions?

    - Diane

  • April 7, 2011 6:51 p.m.

    My mother has FTD and was properly diagnosed in July 2009. FTD is rare and has its own sets of challenges. When I look back over the past 5-6 years there were signs of the dementia, even though Mom did not live with me. Mom' FTD started around the age of 63-64. That's probably the worst part of this disease is the young ages. I started a new blog just today for hope, laughter, courage, and gratitude. For all those who wish to follow: dementiacaregiversunite.blogspot.com. I will be adding postings at least every other day. Please share this blog. My hope is that it gets us all through another day, week, month, etc.. with gratitude and courage! Remember, we are not alone!

    - Jackie

  • April 2, 2011 3:14 p.m.

    Is there any treatment for FTD? Husband may be so affected.Inverted nasal polyps-whole life. Multiple minor and major surgeries-about 60 years- Major removal of built up necrotic material in left frontal sinus about 5 years ago found that material penetrated soft bone tissue and abutted left frontal lobe. Can this have caused thisdementia? Personal Hygiene horrific-complains that something is wrong with his head; says it feels crazy. He's otherwise a healthy 93 year old with benign prostate enlargement. Thank you for any and all help you may be able to give me.

    - Elizabeth

  • March 24, 2011 2:22 p.m.

    Hi , my mom probably started with memory problems /social problems 20 years ago . She is now 91. In looking back , I remember that she became very unorganized in keeping on top of her bills, became very self conscious about going out with friends saying she wasn't dressed "right" when in fact, I believe she felt she could not communicate intelligently any more. Communicating and socializing had never been problems before. She became more and more reclusive, except for family and 1 or 2 friends. About that time she was diagnosed with dementia , possible Alzheimers . My sister moved back into to town to take care of mom more and after mom fell down the steps, mom moved into apt next to her ( about 8 years ago) . Mom has become more and more dependent on amy (my sister) over the years. In the last 3 years , mom has become more and more innappropriate in remarks, making sexual comments about family and strangers when around them. She is extremely repetitive in her speech and very childish. About a year ago , she was diagnosed with frontotemporal dementia. She was put on seroquel to help control such behavior. My sister is needing more and more breaks from mom as she has been living in same house as amy for about 4 years.It is very improtant that the primary caregiver gets help and "mini-vacations" . Just taking mom for 1 day - 5 days give amy the refreshment she needs

    - greg

  • March 11, 2011 6:44 p.m.

    My husband has FTD .. he was first diagnosed with Alzheimers. However, in the 3 years since diagnosis it's mainly his speech and inability to communicate that is most impacted. It's so painful to lose someone you love piece, by piece

    - Kathy

  • March 2, 2011 11:47 p.m.

    Hi! I need help! My mom is 64 and acting crazy! It started 10yrs ago. She would repeat herself (ex: daily calling and telling my brothers and her friends to tell them that I was pregnant; when in fact, they knew, and I was in my third trimester..it was old news) She started demonstrating socially innapropriate behaviors, eating uncontrollably. She has no empathy for others, for example, she was at my cousin's funeral. She walked up to my crying aunt and said with a large smile," look at my tan, I was in Jamaca. It was wonderful. She will walk up to strangers and tell personal information. She has word finding difficulty. Her comprehension is dimished. Her judgement is off. We can not leave her alone with our children. The woman who would not let me watch "Jaws", has been found viewing rated "R" movies with her young grandchildren. She calls me and my siblings 5-6 times a day. When I answer the phone I typically get the same "HI Kel" as if we havent spoken for a while even though we may have just spoken an hour ago. We then will go through the same list of questions that I already answered that day. She seems "out of it" then back on. She underwent and MRI and the the results were normal. She also participated in a dementia screening at the Doctors office and passed. I am happy about the results, but what can I do, she has no awareness that she is acting crazy,and is mad at me for asking her to be tsted. She is as

    - Kelly

  • January 11, 2011 11:49 a.m.

    I see an increasing number of FTD and Lewy Bodies but the Drs don't seem to understand as much about them as with alzheimers. I continue to try to educate and refer families to web sites so they can make their own informed decisions

    - Teresa

  • January 5, 2011 11:10 a.m.

    I've read all of the posts and find them very interesting. There seems to be a common thread in my husband's condition. He was diagnosed with FTD about eight years ago, but about three years ago he had a PET scan and was found to have had a stroke in his right temporal lobe. His disease is not expected to deteriorate as fast as FTD, which was good news. His language skills are good, but he has no self motivation. He lies around and watches TV when he is awake and sleeps about twenty hours per day. He has drunk excessive amounts of diet sodas for about thirty years, and continues to do so. He loves sweets and snacks constantly, even though he is diabetic. He is an impulsive buyer as well, and he loves to watch videos of big breasted women on the Internet, for which I'm constantly blocking. He is 68 years old now, and I hope that he doesn't do what Rosa's husband did. I think that he is too dependent on me to leave me. It's not easy, but going to support group meetings and being educated and informed about dementia really helps me keep my sanity.

    - Janet

  • June 9, 2010 4:26 p.m.

    My 58yr old mom was diagnosed with FTD in 2009 after going to specialist of neurology we finally found our saving grace. I fought with a lot of the doctors bc they said that she had Alz. I knew that she didn't, her memory was fine, what wasn't fine was the way she was acting. We have been through a lot in 2yrs. Mom stopped doing everything, including bathing. She went from speaking and studdering, to speaking minimal words to now, not speaking at all. Dr told us that she is progressing really fast and to watch her. She hasn't been aggresive (that much) she hates sitting on the toilet or getting into a car. She will fight back but just with weight. But she is so loving, she loves to just sit and "cuddle". We tried giving her puzzles, coloring books, we even tried the Wii games none of those peeked her attention for more than a min. so, taking walks, watching shows, taking her to movies is pretty much what she loves to do. But we recently wnt back to the dr said that since her appetite has decreased and she is starting to put none eatible items in her mouth to watch closely because she will eventually need to be placed on a feeding tube and it was our chose to let nature take its course or not. Let me tell you that was so hard to hear for my mom. She is my angel and just know that there are people out there for you if you need them, and don't feel alone, because your not!!!! xoxo

    - Kimi

  • May 20, 2010 4:56 p.m.

    My gentleman friend was just diagnosed with Frontotemportal Dementia (Picks's Decease). He has been having trouble with his memory for years and we all thought it was normal old age setting in. Over the past few years he has shown inappropriate social behavior, difficulty learning new things, trouble with his "reasoning" and lately, a lack of any interest in the things that used to bring him joy. I think he has been slipping for at least 5 years. The difficult problem is not knowing how long before he looses his language skills all together or his ability to interact with family and friends. Two years or twenty?

    - Donna

  • March 4, 2010 11:35 a.m.

    As a former New Mexican who continues to work in mental health, I want to express my gratitude for Senator Dominici's long list of accomplishments and wish his family strength and compassion through his course of this difficult illness.

    - Alisabeth

  • 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

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