1. Welcome to Talking Point - an online community for everyone who is affected by dementia. Whether you have dementia or know someone who does, we will be there for you.

    Sign up to join the community, or Log in if you're already a member.

    If you need help using Talking Point, read our Help pages or contact us at talkingpoint@alzheimers.org.uk

  2. Hi everyone, Talking Point is back! We’ve updated the software in order to improve security, design, and the way the community works, and introduced some helpful features.

    Find out more

Frontal Lobe Dementia

Discussion in 'Younger people with dementia and their carers' started by Hayleymarie, Nov 13, 2016.

  1. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    19
    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. canary

    canary Registered User

    Feb 25, 2014
    4,334
    South coast
    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/scripts/documents_info.php?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.
    :)
     
  3. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    81
    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. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    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. Amy15

    Amy15 Registered User

    Jul 5, 2016
    8
    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. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    19
    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. rosemouse

    rosemouse Registered User

    Oct 12, 2015
    6
    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. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    19
    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. Nanawendy6

    Nanawendy6 Registered User

    Sep 17, 2014
    36
    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. vanman

    vanman Registered User

    Jan 3, 2017
    11
    Warwickshire
    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. canary

    canary Registered User

    Feb 25, 2014
    4,334
    South coast
    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.
     
  12. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    19
    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. dancer12

    dancer12 Registered User

    Jan 9, 2017
    185
    Mississauga
    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. Hayleymarie

    Hayleymarie Registered User

    Sep 22, 2016
    19
    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. canary

    canary Registered User

    Feb 25, 2014
    4,334
    South coast
    Yes dancer, I think these feelings are quite normal.
     
  16. dancer12

    dancer12 Registered User

    Jan 9, 2017
    185
    Mississauga
    dancer123

    Hi:

    It's a terrible illness, not only for him but for all those that love him. I am just so scared & terrified that I can't handle things by myself. I can't even get an I love you or a hug from him anymore. Sometimes I just feel like running to someone else just to feel wanted again. Are my feelings all wrong. YOU ARE ALL SPECIAL, SPECIAL PEOPLE. Don't know how I can cope, any ideas would be appreciated.

    Thanx Much
     
  17. canary

    canary Registered User

    Feb 25, 2014
    4,334
    South coast
    What problems are you having dancer?
    Is he at the explosive rage stage where you are walking around him on eggshells? Are you dealing with obsessions or the fall out from terrible decisions? Or is the horrible apathy and stimulus overload preventing him from doing anything at all?
    Tell us what is happening and Im sure someone will be able to offer advice.
     
  18. dancer12

    dancer12 Registered User

    Jan 9, 2017
    185
    Mississauga
    dancer123

    Hi:

    Don't know what it is, he just seems to be avoiding me. I feel like I'm all alone in a big house. When I'm away from him I'm happy (not exactly) but my personality changes and when I'm around him I'm sad and feel like crying all the time. I'm glad when he goes to bed at night and I'm all alone with my thoughts. Maybe I just feel guilty when I'm around him and he feels guilty when he's around me.
     
  19. Nanawendy6

    Nanawendy6 Registered User

    Sep 17, 2014
    36

    Before he was diagnosed I couldn't understand why my husband was ignoring and avoiding me. He still does but now I know why still hurts though. I used to yell at him for treating me like furniture! Divorce time. When I'm home hes in a different room but if I'm out all day he goes for a walk. I'm told it's because he misses the routine of me being home. ( I think he just misses me). Processing language, people or tv, is hard work for people with semantic FTD. What 'canary' calls stimulus overload switches my husband off. He mostly listens and answers family and close friends but 'rests' his brain with me as it's so tiring. His doctor says to keep language as simple as if he was 5 years old to be sure he understands and is more likely to respond.
    Like you I cope by having time away from him. So far he's been able to get his own meals but suspect it won't be for much longer. Tell myself that missing meals won't kill him and he gets plenty of calories from the sweets he's always eating.
    His doctor/neurologist said last week the FTD is progressing very slowly so I can still enjoy my social life for a bit longer. I was relieved and happy to hear it. I was feeling i just wanted it to be over knowing the worse was to come. Heart attack in his sleep. But not yet. It is a hard road ahead. As you say it's the loss of our future. It stinks and I feel just the same as you. We're entitled to feel anyway we want.
    Do you have family or friends to support you emotionally or practically? Gp or memory clinic? Dementia support group? You sound as if you're coping alone. I've been astonished at the kindness of others since husbands diagnosis but sadly disappointed by those who can't cope so do little or nothing for him. Even with help it's hard. I retired when he was diagnosed to spend quality time together but it was too late.
    There don't seem to be many posts from spouses/partners but hopefully others can share experiences and suggestions.
     
  20. dancer12

    dancer12 Registered User

    Jan 9, 2017
    185
    Mississauga
    dancer123

    Hi:

    Thanks for reply. That makes me feel better and I'm beginning to understand more and feel less alone all the time. Yes I do have friends and I'm starting to think about not going out as much because I don't want him to feel so alone all the time More than all rlse I'm really terrified - for him, for my kids and for myself not being able to cope. I try to keep saying to myself everything happens for a reason and I just need to find out what this reason is

    Thanx much. I feel better just knowing that someone else feels the same way I do and I'm not alone..
     

Share This Page