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. BRIDGETJ

    BRIDGETJ Registered User

    Dec 2, 2015
    6
    Hi everyone. I'm new to this site but by reading everyone's comments I see my experiences are very similar. My mum has mixed dementia. I know dad knows but mum doesn't. Her memory is poor and getting worst. She refused to keep attending the memory clinic because she didn't like the tests!
    However 2 days ago she asked me to contact her doctor to get the tablet!
    This tablet only helps people with Alzheimers not vascular dementia.
    The doctor says she has to tell mum her diagnoses if she wants this tablet.
    My fear is my mum will go to pieces once she's told. I'm so worried.
     
  2. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    first welcome . I have using this sight for 3 years as my MIL has Vascular dementia and seams to be the best place to get information and advise .My MIl did not even go to memory clinic she had a scan and a dementia nurse came out to assess her and an OT to see if we needed any changes to house as she lives with us as she cannot cook, and now needs personal care. We decide that she did not need to know as they did nit advise any tablets. But she had a bad UTI in March and ended up in A and E every other word the Dr and nurses said was you have VD we were not happy but with 5 mis she had forgotten any way. if its the only way to get help then I would tell her she will forget .
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I am so sorry that you are having this experience with your Doctor. My Mother would also have gone to pieces and we didn't have any tests but I knew from background and the way it was going that it was vascular so no help anyway but I told all professionals that we didn't want her to know and they were very good. Would your Doctor just consider telling her that she is prescribing something that will help with her memory difficulties without giving it a label. I would drop a note in to ask if that is possible and explain that you feel that it would be detrimental to your Mother's mental health to give her a diagnosis or indeed too much detail. I would then hope that your Doctor would rethink the approach.
    Good luck xx
     
  4. MorbidMagpie

    MorbidMagpie Registered User

    Nov 10, 2015
    23
    England
    It isn't very ethical to keep a diagnosis secret from someone. They may want to make certain decisions/plans once they have that information that they otherwise may not get the opportunity to make.

    Of course it will be upsetting, being told you have any health condition is a blow. People need to make informed decisions about how they proceed with treatment (or not) though.


    Living each moment life throws at me as a social worker and with a dad with younger onset dementia.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    It might not be 'ethical' but I think families know each other best and I knew without a shadow of a doubt from previous conversations with my Mother that she would have been devastated. I also knew that when my husband's cancer became terminal he didn't want to know either - that didn't mean that we didn't talk through decisions that needed to be made - in both cases we did in great detail - I just didn't need to share bald facts. I think it is far harder for the partner/carer to be in that position but with love and care it is possible to protect the person, if you know that is what they want, and still give them all the opportunities they need to do the things they need to do. Both of mine were happier in their ignorance - I guess it all boils down to individuality.
     

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