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  1. #1
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    Frontal Lobe Dementia

    Hello, my Mum has recently been diagnosed with Frontal Lobe Dementia. She is 61 and her symptoms started last year.

    Just wondered if anyone has any experience of this, it seems like one of the less 'common' forms of dementia and I don't know what to expect for the future.

  2. #2
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    Hello Hayleymarie and welcome to Talking Point.
    There are a few of us on here who care for someone with FTD. There are several different types of FTD - usually behaviour variant or semantic variant. With behaviour variant the initial problems relate to their behaviour and with the semantic variant the initial problem is with their speech.
    Here are a couple of links you might find helpful
    https://www.alzheimers.org.uk/site/s...documentID=167
    http://www.theaftd.org/understandingftd/ftd-overview

    With any sort of dementia it is a good idea to get POA and wills sorted early. I would also recommend that you go to CAB or Age UK to check that she (and you) are receiving all the benefits that you are entitled to.
    If you have any specific queries/problems do post and someone will know the answer.
    Learning to sing in a cage

  3. #3
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    I'll post a little about my dad. What I gather from reading about other people's experiences, after the early stages, the symptoms/behaviours are quite similar amongst the different types of dementia.

    Initially (before diagnosis) my dad seemed to be acting very strangely. He wasn't forgetful but he'd do things that were very out of character - buying things from people selling door to door, accusing people of stealing, becoming angry at perceived slights etc.
    He became very bad with money, he lost a few £k to a PPI scam, became paranoid that he couldn't afford to do his weekly food shop etc.

    Socially, he became more withdrawn, especially in large groups. Eventually we found out that his colleagues at work had been covering for him. He hadn't been doing his work or supervising his staff properly. He became very anxious about work when he got a new boss who wasn't familiar with him. (His colleagues were well intentioned, but ultimately this may have delayed his diagnosis)

    Gradually he became more and more forgetful. When driving he needed directions in areas where he'd lived/worked most of his life, forgot/became confused about which year/month/day it was etc.

    He couldn't make food for himself any more. He struggled to make tea or coffee and an attempt to make himself a ham and cheese sandwich resulted in coffee grounds and sugar amongst the filling. He drove my mum round the bend a few times when poured orange juice into the milk.

    He stopped washing himself, no showering, no brushing his teeth or wearing clean clothes every day. He seemed to struggle to get his words outs/explain things.

    He took 3 weeks off of work over christmas (one more week than he was supposed to) and when he went back it took him over 4 hours to get drive home from work (his normal commute was ~45mins). That's when my mum took him to the GP and had him signed off of work.

    He had been going to the memory clinic every 6 months for a few years by this point, but leaving work seemed to really push the consultants for a diagnosis.

    In the two and a half years since his diagnosis, he has deteriorated very quickly. Within a year of diagnosis he had started going to the toilet (number 1) in his bedroom. Struggled to get even basic sentences out, lost the ability to understand even basic concepts. Had accidents with number 1&2, became more aggressive and violent, refused personal care etc.

    ETA: He also tries to eat/drink non food items, e.g. cleaning products, so these need to be locked away from him.

    He attended a day centre run by Age UK for almost a year until he had to leave due to too many violent incidences. Before he went to a retirement club until he walked out and was found by the police after being reported missing.

    He has probably needed full time care for a long time now. We hope to have a place for him in a good care home within the first few months of the new year.

    From what I gather his quick deterioration is pretty abnormal.

  4. #4
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    Mum

    My mum was diagnosed eith frontal lobe dementia at 55 and is now 57. She was diagnosed in august last year and has had massive deterioration since diagnosis. We noticed mum was always tired and got a new car and couldn't drive it properly. She never got lost and can still give direction now when she is out amd about. Always with somebody though never alone. Mum really struggles with her speach and that is what i find hardest as she knows what you are saying to her and she wants to reply but finds it very hard. Mum jas carers in 4 x a day to help support wash her and prepare food etc as shes incapable of doing this but the support workers we have invovle her as mum as they can. Mum has become isolative and quiet and i think its due to lack of confidence and her inability in communicate. But for now shes still living at home

    I am 25 and my sister 23 if you ever wabt to chst just message me.

  5. #5
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    My Dad has FTD but it wasn't until last year, four years after his diagnosis, that I began to notice any symptoms or changes. I'm fifteen so I guess I don't really remember exactly how he was before but it all seems to be pretty gradual.
    For Dad it is almost entirely behavioural changes - he is very aggressive and unreasonably and gets visibly frustrated and upset with himself when he can't remember something. He's also paranoid that my brothers and I are all out to get him, or mislead him and I think this is where a lot of the aggression comes from.
    Good luck for the future.

  6. #6
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    Thanks all for the replies they are most helpful. So sad to hear of everyone's struggles and it seems there is a real variation and no specific timescales of progression for anyone.

  7. #7
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    Quote Originally Posted by Hayleymarie View Post
    Thanks all for the replies they are most helpful. So sad to hear of everyone's struggles and it seems there is a real variation and no specific timescales of progression for anyone.
    Hi Hayleymarie, my mum was diagnosed last year with this type of dementia. She is 67 years old and has had symptoms for at least a few years now, probably not long after she retired it started, but we could never quite pin down what was wrong. We finally got her to the doc, she remains convinced there's nothing wrong / it's normal.

    To be honest, we haven't seen the very quick deterioration (yet?!) that the others on this thread have - she is still active, goes to gym classes, can still drive, cook, look after herself, but in terms of her behaviour - especially her capacity for empathy and engaging in groups, language, it's gradually slipping. She struggles to find the words for things and often just sort of glosses over whatever you tell her, although she asks questions and remembers if I've been on holiday etc. She sticks rigidly to plans, and doesn't seem to hear the word "no" - the lack of empathy is a killer. Her judgement is affected. She thinks my dad is always "having a go at her". (he of course gets frustrated, but otherwise is the most patient person on earth, it's hard)

    We haven't been given any timescale and it seems to vary a lot - anyway will probably be using this forum a lot over christmas as I'll be at home and it's a stressful time of year for the family - so support is here if needed!

  8. #8
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    Hope Christmas was not too hard for everyone.

    Rosemouse that is similar to my Mum she doesn't seem too bad at the moment although she was hospitalised at various points this year for manic behaviour she seems to be on an even keel at the moment but still very vacant in a way.

  9. #9
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    Quote Originally Posted by Hayleymarie View Post
    Hello, my Mum has recently been diagnosed with Frontal Lobe Dementia. She is 61 and her symptoms started last year.

    Just wondered if anyone has any experience of this, it seems like one of the less 'common' forms of dementia and I don't know what to expect for the future.
    My husband is 70 and was diagnosed with FTD 4 years ago. Initially treated for depression he was referred to mental health for older people team. His apathy was obvious to those close to him but he functioned at work then retired a year before diagnosis. His memory for faces and names worried us both. He saw a psychiatrist then was referred to memory clinic. He has gradually withdrawn from family and friends and now spends all his time playing computer games in another room. He no longer enjoys reading, tv or music. Unless we arrange to go out he only sits with me long enough to eat his meal then leaves. He can't initiate conversation so we are limited to asking open questions that he might answer or ignore. He could be aggressive before he was diagnosed but a combination of medication and avoiding stress has been effective. He swims regularly but never showers at home. He doesn't change his clothes so I put them out for him. He goes swimming or into town by bus independently. He doesn't say where he's going but he wears a gps tracker which gives me some piece of mind. Assistive technology in my area supply the tracker and a door alarm in case he goes out at night. Both free.
    As others have said power of attorney and wills are essential. Made sure both our names are on utility bills. Our bank was very supportive. You may be entitled to a council tax reduction. My husband has the full attendance allowance which was unexpected but welcome! In my area there are several support groups though we haven't been yet, and the advisors from Alzheimer's society are brilliant. Sorry it turned out to be a long reply. That's the practical stuff. Emotionally it's a tough diagnosis for families to live with. My husband seems to be content in his way but it's hard for our family now and it won't get better!

  10. #10
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    PPA help

    Could anyone suggest any other, more specific forums for PPA, especially logopenic? This one is superb, but still looking for answers Thanks!

  11. #11
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    Quote Originally Posted by vanman View Post
    Could anyone suggest any other, more specific forums for PPA, especially logopenic? This one is superb, but still looking for answers Thanks!
    You might find the FTD forum helpful http://www.ftdsupportforum.com/forum.php It isnt specifically for PPA, but it does cover it and there are a few active members on there who care for someone with PPA. It is based in USA, but has members from several different countries.
    Learning to sing in a cage

  12. #12
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    Thanks for the reply NanaWendy, so sorry to hear about your husband. It is so hard to watch the person you love change so dramatically. I fear we have a long road ahead of us

  13. #13
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    dancer123

    Hi everyone:

    So sorry to hear about all your struggles with this illness. My husband was diagnosed with it @ 5 years ago. He is now 68 and I am 58. I was looking forward to his retirement so we could spend time together but that is all gone now. I'm upset, hurt & resentful, not of the illness but of our future having disappeared. Is this normal of am I just being selfish and spoiled.

    His speech seems to have gotten worse in the past few months. Don't know what to do.

    Any advice is appreciated.

  14. #14
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    I think those feelings are perfectly normal Dancer Life can be so unfair sometimes.

    Afraid I don't have much advice as we are in the early stages but I'm sure plenty of people on here are going through similar

  15. #15
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    Yes dancer, I think these feelings are quite normal.
    Learning to sing in a cage

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