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Frontal Temporal Lobe Dementia

Discussion in 'Younger people with dementia and their carers' started by jaydon, Jan 11, 2007.

  1. jaydon

    jaydon Registered User

    Aug 13, 2005
    Hello there,

    I have posted on her once or twice before, but not regularly. I was hoping that someone may be able to offer me some support.

    I am 36 and my sister is 32. Our Mum and Dad are divorced, but our Dad remarried when I was 18. Last year, Joan, my Dad's wife, broke the news that Dad had been diagnosed with Alzheimer's at the age of 65 - the consultant felt that he had probably been suffering with it since he was 60.

    Before Christmas, Dad had some more tests - we don't really know what - and yesterday he received the report and results. He has been told that he has Frontal Temporal Lobe Dementia.

    From the fact sheets on this site, I gather that this isn't Alzheimer's and can have symptoms that are quite different. It also seems that this can be a genetic disorder, which is obviously quite a concern for me and my sister.

    Could anyone shed any further light on this condition? Has anyone got any direct experience of it? Any information or advice would be very gratefully received. Both my sister and I have been struggling to accept my Dad's diagnosis, as his memory seems quite good, although he clearly isn't a well man. We want to help him as much as we can, as we love him dearly and feel devastated by this news. However, I feel we have to face-up to the fact that he has this, and to do this we need to understand it more.

    I am feeling quite stunned and scared at the moment. I wish so much that I could do something for my Dad, as I know that he is terrified. Poor, poor Dad - I can't bare what is happening to him and don't want to lose him.

    Sorry for the self-pity. Everyone on here has clearly had to deal with so, so much.
  2. susie

    susie Registered User

    Nov 30, 2003
    Hello Jaydon
    You will find a lot of support for all different types of dementia on TP. My husband has FTD and Alzheimer's and although many symptons are the same, there are many different chararcteristics too. I'm not very good on the computer, so I don't know how to put in the link for the Pick's Disease Group, but their website covers frontal temporal dementia. It can be challenging, but much of it is how you react to their behavior. Just remember, he can't help him,self-easier said than done! Get all the help you can as early as possible as I found my husband began to resist new people and help quite early on. I'm also lucky to get regular respite every 6 weeks without which I couldn't cope and I've found that keeping life very organised and calm helps to keep my husband calm.
    Cultivate hobbies now as apathy and boredom can be a problem
    The more you find out about the illness, the more you will understand the unusual behaviour.
    If you want, you can always send me a private message if things are tough.
  3. embie

    embie Registered User

    Apr 27, 2006
    Sorry about your Dad


    Sorry I cannot help you but I felt I had to reply after reading your post. My Dad has the same condition and is also 65. He was diagnosed almost two years ago.

    It is very frightening and I really feel for you and your sister. All you can do is appreciate your Dad while you have him. He isn't the man he used to be, but a part of him is still there. (I have to keep reminding myself of this). For now I am trying to appreciate that he still knows who I am most of the time and that this might not be the case for long so I try to speak to him as often as I can.

    We have been told that it is important to keep encouraging your Dad to read and write, as maybe the practice can help him hang on to these skills for a little longer.

    I have also read this form of dementia runs in families and apparently there are tests available to see if you are at risk - but what is the point? I would love to know that i won't develop the condition when i'm older, but what if i found out that i would? It doesn't bare thinking about.

    Again, sorry i've not much help. just thought you should know you're not alone.

  4. chip

    chip Registered User

    Jul 19, 2005
    My husband has the same he is 53 now was 49 when it started. So if i can be any help PM me as well. It hard no matter which one they have and they can all differ, but everyone will help you as much as they can.
  5. Loulee

    Loulee Registered User

    Jan 9, 2007
    Sorry about your dad

    Hi Jaydon

    Read your post and I really feel for you.

    You are already doing something for your dad by being supportive in this tough time you are facing.

    Your dad will be scared and so try and get as much support and info as you can from your GP, social services.

    I have also found this forum a great help for advice and support.

    Feel free to talk to me and have a chat when you want to.

    Hope this helps.

    Take care

  6. bel

    bel Registered User

    Apr 26, 2006
    re your dad

    dear jaydon
    so sorry to hear about your dad keep posting on tp i have found the support a great help my hubby has the same as dad he is 60 he was diagnosed 2 years ago but had shown signs for years before if you have any questions that i can help with give me a shout ----i am not very good but will try sending love bel xx
  7. jaydon

    jaydon Registered User

    Aug 13, 2005
    Thank you

    Thanks so much to everyone who has taken the time to respond to me - I really do appreciate it.

    Dad is coming for tea tonight so I'm going to have a chat to him about how has been feeling since this new diagnosis. I know he wants to talk about things, though he sometimes struggles to express himself. My dad's wife has also asked if we can all meet up to have a chat to see how we can all work together to help.

    Thankfully, Dad hasn't yet had any problems recognising anybody and has never forgotten our names - this must be so difficult for relatives when this happens. I am just hoping that Dad will carry on as he is for a while. At the moment, he also seems able to learn and remember the names of new people, so hopefully this is a good sign.

    I will keep in touch. I hope that you are all coping as best as you can with this cruel disease. Please contact me if you feel I can be of help, although I am only at the beginning of this journey.

    Thank you so much, once again.

  8. zed

    zed Registered User

    Jul 25, 2005
    Hi Jaydon

    The Pick's Disease Support Group website is www.pdsg.org.uk

    They have a helpline and meetings in London every few months. I really recommend getting in touch.

    When we found out my mum had dementia (aged 57) we were originally told it was Alzheimer's, then Pick's, then vascular, now back to Alzheimer's which seems to be the diagnosis the doctor is happy with. For a good 6 months we thought it was Pick's so I did a lot of reading.

    You can get info from the Pick's Disease Support Group on genetics. It is something I worry about a lot as younger-onset Alzheimer's as my mum has can also be genetic. But it is definitely not a foregone conclusion. As I understand it if it genetic there would be a family history, and even if your family members have had the genetic form, it does NOT mean you will.

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