Genetic testing/counselling

Discussion in 'Younger people with dementia and their carers' started by JessL87, Oct 9, 2018.

  1. JessL87

    JessL87 Registered User

    Jul 19, 2017
    14
    West Yorkshire
    I am just wanting to know if anyone has had genetic testing/counselling due to family members having early onset Alzheimer's??
    My mum was diagnosed last year at the age of 53. Mum has got worse quite quickly in the last year despite having rivastigmine patches. Her psychologist, who we saw today, has now introduced memantine, she also asked if genetic counselling/testing would be something I'd be interested in finding more about? I think i should as i have two young children myself and would like to plan ahead but just wanted to hear other peoples stories/opinions.
    Thanks
     
  2. try again

    try again Registered User

    Jun 21, 2018
    196
    I think I'd want to know and have the screening. I have no practical experiences to pass on but knowing myself if I didn't it would be a nagging worry.
     
  3. Louise7

    Louise7 Registered User

    Mar 25, 2016
    509
  4. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    472
    What a difficult situation. You need counselling before you are tested. Consider whether you need life insurance before testing - afterwards it may not be possible.
     
  5. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,229
    This is very much my personal opinion but I wouldn't want to know if the odds were stacked against me. It's not that I bury my head in the sand as a person, in fact quite the opposite, but for me this rests on what can be done about it, what would be gained if the news was bad. If there was a cure (or when there is a cure) or an early intervention making a huge difference because of some new drugs or therapies, then yes, I'd be all for it. But for now I wouldn't want something I can do little about hanging over me.

    That said, I'm doing my bit to stay healthy with good food, exercise, plenty of mental stimulation in my work and so on. All my legal affairs are in order too and my family know what I would want for myself under different scenarios. All important because none of us know what's around the corner. We might get a lovely all clear for one thing then get knocked over by a bus on the way home, if you know what I mean.

    So that's me, live well, take care of the business end of your life, and don't worry about things you can't affect.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    6,444
    Yorkshire
    hi @JessL87
    I am wondering why the psychologist made such a suggestion - have there been several members of your family diagnosed, as inherited risk is quite rare - or is it her own research interest
    I doubt there's a family carer who hasn't had the thought of inheriting genes cross their mind, or a carer who wondered whether they are looking at what's in their own future
    Personally, I agree with Delphie - it's wise for us all to take care of health and wefare and put legal matters straight - it is an individual choice though, and I guess joining a research project will potentially benefit both you and everyone
     
  7. JessL87

    JessL87 Registered User

    Jul 19, 2017
    14
    West Yorkshire
    Hi, no there isn't any other family members ever had Alzheimer's. She said that with mum being only 53 at diagnosis that might be something to consider IF i wanted to. Both my grandma and great grandma on my mum's side both died very young so we don't know if alzheimers was something they may have had too. Xx
     
  8. JessL87

    JessL87 Registered User

    Jul 19, 2017
    14
    West Yorkshire
    Thanks everyone for your replies.
    I'm just thinking that as a single mum with two young boys, id perhaps like to be aware of anything that may lie ahead.
    X
     

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