1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. toni-uk

    toni-uk Registered User

    May 13, 2007
    4
    been reading about everyones experiences for weeks and found the forum extremely helpful. and thought it was about time i joined. i am 24, my dad has just been diagnosed with alzheimers (he is only 58) it was obviously a huge shock to the whole family and completely devastating.

    at this stage all we have been given is the information of the diagnosis itself and are awaiting a further appoinment where i presume we will be told what the next step will be. the way in which i am trying to cope with all this is thru self education and learning as much as i can so as to get the best understanding and outcome from this appointment. i have been researching the dementia drugs and obviously the nice guidelines surrounding them. yet on this website i have read about peoples experiences with ebixa. which i am having trouble reasearching. nice guidelines are stating that they do not offer it. does any one know if this is a financial limitation (and if appropriate a private prescription could be obtained) or if it is being restricted for health reasons??

    any advice on anything at all would be appreciated so much.
    toni xx
     
  2. Áine

    Áine Registered User

    hi toni ...... welcome to TP.

    i'm sure someone else will be able to say something about private prescriptions.

    any advice about anything at all?

    take it slowly, don't try to solve everything straight away, give yourself time to come to terms with how you're feeling about the diagnosis (that is, take care of yourself as well as your dad), keep talking to friends and family about what's happening and your concerns, keep posting :)
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Hi Toni and welcome to TP

    I imagine your entire family are in shock: this is an exceptionally cruel disease.

    Have you noticed the i Factsheets link at the top left of this page? These factsheets are a great resource to learn about what is available (and appropriate). Ebixa is currently only available I believe if it is prescribed as part of a controlled study. However, I believe that people who were on Ebixa before the NICE guidelines were published have been allowed to continue on it. Also, don't forget we have posters from all over the world, and some countries are more willing that others to prescribes these meds.

    Best wishes

    Jennifer
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Toni, a warm welcome from me too. We have quite a few members caring for people with young onset dementia, so I'm sure you'll find lots of support.

    Regarding drugs, the NICE guidelines state that the three main AD drugs can only be prescribed in the moderate stages of the illness.

    Ebixa is specifically for late-stage dementia, so wouldn't be appropriate for your father at this stage. NICE has said that it shouldn't be prescribed at all.

    People who are already on these drugs can continue on them, and there are also people who have private prescriptions for Ebixa. Some people who are recently diagnosed are still being prescribed the other drugs, but I don't know if this is privately, or whether some PCTs are still offering them.

    It's something you'll have to discuss with your dad's consultant when the time comes. The cost is approx. £2.50 a day.

    I'm so sorry you've had this devastating news. It always seems harder when a younger person's involved.

    Post again and let us know how you get on.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hi Toni, so sorry about your father, another young sufferer. :(

    I understand how much you want to learn about Alzheimers and the associated implications but I`m sure you will have realized from the posts you`ve read how many variations there are in symptoms, reactions to medication and progression.

    Still, it can only help you to learn as much as you can, which should enable you to take each day as it comes.

    Take care
     
  6. toni-uk

    toni-uk Registered User

    May 13, 2007
    4
    thanks for relpying.

    it already feels like a release just talking to someone. i know i sound like im jumping the gun with drugs but its so scary when you hear stories about this postcode lottery and dementia discrimination. and i feel like its going to be the only way to keep my dad for as long as i can.

    my main problem is that i work in healthcare and feel as tho i know too much about dementia if you know what i mean, from the patients ive worked with. and like you say everything about the disease really is soul destroying. and because of this i feel that i cant talk openly with my family thru fear of upsetting them further. we are all extremely close but they think im coping the best. but im not.

    toni xx
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi again Toni. This last sentence of your reply made me jump. It's what people thought about me -- till I broke down!:(

    Don't try to be too strong. Ask for help, talk abouit your worries, here on TP if you don't want to talk to your family.

    But don't bottle it up! We're none of us superwomen, and here on TP we know that. Just don't try to go it alone. We're here to help.

    Love,
     
  8. toni-uk

    toni-uk Registered User

    May 13, 2007
    4
    thanx hazel thats really nice. ill probably talk too much now, you wont be able to get me off the forum!!!!

    toni xx
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    #9 Skye, May 13, 2007
    Last edited: May 13, 2007
    Talk as much as you want! The forum wouldn't exist if nobody talked!:)

    PS You oan talk on the main forum too, if you want, you don't have to stick to Younger People. More people hang around the main forum, so you get more replies. Then ther's Tea Room if you feel like a natter or a giggle!
     
  10. annesharlie

    annesharlie Registered User

    Toni

    It's such a difficult time for you. I am sure you realize that there are no miracle drugs that will cure a dementia. From what I understand - depending on which areas of the brain are most affected by the disease the doctors make their decisions about which drugs would suit best. I don't think it's too helpful to be reading up on various drugs till you hear which one they think will be the best fit. It would be good for now to focus on some time spent with your dad - my children are 24, 21 and 17 - their dad is 52 with FTD, and we know that Ron's time of lucidity is limited, so we want to make the most of it.

    You said you'd appreciate any advise - be supportive of your mom ( I presume she's with him full time?) try and give her a short break for an afternoon or evening - you are also an adult now and can act in the role of supporter and adviser for her. I know for myself, it is so very hard not to be able to talk to Ron about my worries about the disease and our future, but it helps so much to talk to my two older children. Hopefully you can face this together as a family.

    Please post any questions or updates.
    Anne
     
  11. toni-uk

    toni-uk Registered User

    May 13, 2007
    4
    thank anne.

    it was nice hearing from you as your family seem to be going through a similar situation as my own, except we seem to be a few months behind you! so your advice is really helpful. im half way through a nursing degree so im afraid its my instict to want to try to cure as opposed to cope. i suppose with my experience i will have practical advantages when the time comes to care for my father, although i dont think that would make it any easier.

    my mother has good days and bad days but all in all i think shes doing amazing. im being strong for her and im proud that she seems comfortable being as honest and realistic about her thoughts and fears with me because of my job. (she knows whatever worries she has i will have already considered them previously myself.)

    my dad seems to be the only one who seems ok with all this!?! he says he knew it was there and as far as hes concerned its just been given a title.

    hopefully speak soon
    toni. xx
     

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