Information for carers and individuals with young onset dementia

Discussion in 'Younger people with dementia and their carers' started by Fiona2, Aug 17, 2004.

  1. Fiona2

    Fiona2 Registered User

    Aug 17, 2004
    3
    Kingston
    Hello everyone,

    I've been reading some of your posts and have been very moved by your support for one another and the difficult situations you are having to deal with on a daily basis. I am currently employed as an Assistant Psychologist developing information and resources for individuals with young onset dementia, their carers/ families and professionals.

    One of the aspects I am very aware that I am lacking is the type of information people in your situation feel they really need or have found it difficult to access/ find out about. I would be really grateful for any comments or advice on what type of information you would like or feel you need so that I can make the best resource for you that I can. I very much look forward to your thoughts.

    Best wishes,

    Fiona.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    it is not that no-one is reading your posting. Just that it is a big question you ask.

    I'm thinking on it.

    I'm in Kingston regularly. Happy to talk rather than post. Just don't ask me to try to park at the hospital!
     
  3. Chesca

    Chesca Guest

    Trawl the entire site, it only take about 963 days - it's ALL there in one form or another. But how you'd collate some of it into a form of recognisable reading matter is a job I'll leave to your goodself.

    Best of luck
    Chesca
     
  4. Fiona2

    Fiona2 Registered User

    Aug 17, 2004
    3
    Kingston
    Thanks Chesca and Bruce,

    I am aware this is a tall order with lots to consider and I really hope what I produce at the end of my contract is of use to people in similar situations. Please feel free to make any suggestions that you feel would be/ or would have been of benefit to yourselves as I will be checking the site regularly.

    Best wishes,

    Fiona.
     
  5. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    For me I wanted to know what life for my husband would be like. I also think that the different types of dementia need explaining and the resources availible in different areas.
    I looked into this myself but some people might not know where to start.
    Also find out as much as you can and what your entitled to both in care and benifits.
     
  6. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    Fiona

    One thing I have learnt since my father was diagnosed with Alz and Picks Disease is that information/resources/support varies widely from town to town let alone county to county. We have been lucky here in Shropshire with great support from CPN/social services but I know others have not been so lucky.

    Everybody's needs are different, esp when first diagnosed. Although my mum and I had been suspicious of his behaviour and suspected something was wrong for some time - with no assistance from doctors I'm afraid - it took something quite dramatic to get help - it was still a shock. I cried every night for a month imagining him fading away to a shell and being a shadow of his former self. After the intial shock we live day to day and enjoy the good times we have.

    But it was important for my mum, and other spouses I am sure, to know important information like financial help and the support available. Thats not so important for me but I need to know about this to help my mum bear some of the burden.

    Sorry to rattle on but hope that helps a little.

    Jo
     
  7. Fiona2

    Fiona2 Registered User

    Aug 17, 2004
    3
    Kingston
    Thank you so much Margarhett and Jo, your comments are very helpful to me and will benefit the work I am doing. I hope as a result of this the information will help others, experiencing similar situations to that of yourselves, lives a little easier in such difficult times.

    I wish you all the very best,

    Fiona.
     

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