Getting tested for the alzheimer gene!

Discussion in 'I care for a person with dementia' started by sharpy, May 11, 2015.

  1. sharpy

    sharpy Registered User

    Feb 10, 2015
    My mum has been diagnosed for over a year now with lewy body dementia although we think she has had it longer. Lately i have noticed that i have been more forgetful then usual and finding it hard to get my words out. Could be nothing but i have been thinking about whether to get tested to see if i have the gene. Dont know what to do and any advice would be greatly recieved.
  2. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    No advice, only sympathy.

    In many gene testing situations (eg when Huntingdon's Disease is a possibility) people have a session with a counsellor before making the decision to get a diagnosis or refuse one. Have you been offered anything similar please? If not, could you ask for one?
  3. Summerheather

    Summerheather Registered User

    Feb 22, 2015

    My Mum has alzheimers and I think about it all the time. Every time I forget something, or I can't think of it straightaway, I worry. In Superdrug they actually had the test kit - I was looking at it last week - I think it was about £114.
  4. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Hi! Its actually quite rare to expect to inherit it. There is info on the nhs website which i read on guidlines for gene testing in relation to dementia.

    There are at least a hundred types of dementia. There are certain types like frontotemporal or picks disease(i have no doubt ive got that name wrong after a long day ) where it generally can affect younger people..having said that the youngest diagnosis is 30 yrs old.

    I think that they suggest gene testing if two siblings under 65 developed dementia. Please clarify this for yourselves.

    Its no wonder your tired or forgetting.your caring for someone with dementia.. your stress levels must be through the roof.
    Obviously if your still concerned take advice.
    Best wishes

    Sent from my GT-I9505 using Talking Point mobile app
  5. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    It's on my mind too having had both parents suffer dementia. I think the important point is what to do if you are at increased risk. Will you wish afterwards you had been in blissful ignorance or will it help you plan your future. I am not going down that road yet. At the moment just getting on with life and have written a bucket list to be getting on with whatever happens. Xx
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I would only go for testing if there was a cure. As long as there is no cure what can be gained by knowing you have this cloud over your life which may or may not develop into dementia.

    When we are stressed out we make mistakes and forget things. This does not mean dementia is on the horizon.

    Please don`t let dementia take over your lives. It may never happen and good lives can be ruined.

    As for the £114 test kit? I wouldn`t touch it with a barge pole.
  7. WIFE

    WIFE Registered User

    May 23, 2014
    I should think worrying about whether or not you might or might not have the dementia gene is causing enough extra stress to raise your blood pressure sufficiently to put you at risk of stroke, heart attack or worse!
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I don't know your age but I know that the menopause can produce all sort of unexpected symptoms. I used to walk around feeling as though my head was full of cotton wool. Part of my problem was lack of concentration - as I wasn't listening properly, then clearly I wasn't going to remember what had or hadn't been said ;)

    I wouldn't opt for testing either, not without positive treatment or a cure on offer. I'd be worried that would very easily trigger severe depression.
  9. dottyd

    dottyd Registered User

    Jan 22, 2011
    My grandmother and her three daughters all have/ had it.

    I'm not getting it.
  10. aeg85

    aeg85 Registered User

    Dec 10, 2014
    I don't think I'd want to know tbh. My Great-Grandad had it, now my Nana has it, but none of her brother's and sister's do. I try to keep my mind active, I do think that helps...I hope :)
  11. Delphie

    Delphie Registered User

    Dec 14, 2011
    I'm not interested in a test either, not unless there's a cure or at least effective/reliable treatment to hold it at bay.

    If I was told I had high odds of getting it that would be my peace of mind gone for good.

    We've sorted PoAs and wills etc anyway, and my sons know what I would want in various old age scenarios, so that's preparation enough, for me anyway.
  12. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    There has been a lot of AD on my mother's side, though all late onset. I would not want to know - it would destroy my peace altogether and I am enough of a worrier anyway. However, besides making sure my daughters know what I would want (i.e. no life prolonging meds or interventions whatsoever) I have also made a Living Will so that they would have it in writing to show anyone who might think it was their duty of care to 'strive to keep alive'.

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