1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. KevinMcGowan

    KevinMcGowan Registered User

    Jan 12, 2006
    1
    Glasgow, Scotland
    #1 KevinMcGowan, Jan 12, 2006
    Last edited by a moderator: Jan 13, 2006
    Hello everyone, I'm a journalist working for a British newspaper. I'm writting an article on NICE's possible descision to scrap the EBIXA drug due to costs. My gran has also recently been diagnosed with Alzheimer's and I've seen how tough it can be on the family. I'm wanting to use the article to also touch on the personal side of Alzheimer's and how it affects family members and carers.
    kind regards

    Kevin
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Dear Nada,

    I am so pleased that you have done this. I was quite concerned last night that a journalist might use this site as a source for material. This is a place where people bare their souls, not a source for an article, no matter how well intentioned it might be.

    Thanks
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    You know sometimes...

    Amy I know what you mean about wanting somewhere to bare your soul without losing your privacy (thank god for TP sometimes I've said things on here about how other family members make me feel throught dealing with Dad's disease and worry that they might stumble across the site, and then felt guilty that I can't tell them and others I know in this predicament about this site because I want to maintain my privacy...but god knows I have needed to vent and I have to say that the effect does appear to be therapeutic)....HOWEVER,....

    You know sometimes, I wish we were all 'brave' enough to 'bare our souls' to the public like we do on here and ever so loudly! Why? Just so that the public could get half a clue of the devastation that dementia brings to not only the sufferer but their loved ones, so that the public could no longer ignore this health crisis, so that the government could get half a clue as to what funding truly is needed and how much of both a financial and emotional burden the loved ones are carrying whilst caring for dementia sufferers, so that society could finally understand why dementia carers seem tired, worn out and depressed.

    But I make a mistake there saying I wish we were all 'brave' enough. I'm sure the majority are....the problem is that we don't have time nor the spare energy to make the public hear the truth, and then there is always the possibility that the public doesnt want to hear the truth and that most could never truly fathom the repercussions this disease has, unless they too were experiencing it.

    So if Kev does view this thread again, Kev I'm very sorry about your gran, and I appreciate your being up front with stating your occupation and motivations for posting. This is a public forum but as you can see, baring souls here can be painful and I have no doubts that if you have read a few of the threads you will know this and respect that fact. I would if I were a UK resident be happy to respond to your request except for the fact that it is never wise to reply to an unknown entity requesting private information over the net, thus I suspect the method Nada suggested will be the most ethical and effective.

    Hmm there's my thoughts for the day. :rolleyes:
     

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