1. Expert Q&A: Dementia Research, Tuesday 26th March, 3-4pm

    At Alzheimer's Society our research program focuses on improving care for people with dementia today and finding a cure for tomorrow.

    Hannah from our Research Team will be answering your questions on all our research efforts on Tuesday 26 March between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. JessL87

    JessL87 Registered User

    Jul 19, 2017
    17
    Female
    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
    271
    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
    837
  4. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    590
    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
    1,236
    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
    7,033
    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
    17
    Female
    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
    17
    Female
    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
     
  9. crazyerduck

    crazyerduck Registered User

    Jan 3, 2019
    16
    Hi @JessL87, I get where you are coming from, it's always a worry when a parent has dementia and when you have a family yourself having the information might help plan the future. I unfortunately know for a fact that my father has a gene mutation so am currently going through genetic counselling to see if it's something I will do or not. For me there are benefits (for example, I do not yet have children, so if I know I have the gene then I might go through genetic IVF instead) but no one can underestimate the mental impact of knowing if you do have it, and what possible impact it might have on your ability to get financial loans or insurances for example. The best person to talk through your questions with is a genetic counsellor, if you do go for an appointment, bear in mind there is still very much the choice to not do a test, according to the Alzheimer's factsheet, as many as 50% don't proceed with an actual test after a genetic counselling meeting (sorry I can't post the link to the factsheet as I'm still new to the forum)
     
  10. BazArcher

    BazArcher Registered User

    Feb 13, 2016
    25
    Lakenheath, Suffolk
    Hi JessL87, sadly when my OH was diagnosed after tests including genetic it was found to have been passed on by mother/father. The downside is that I had to inform their side of the family which includes 2 sisters and brother that they were also liable to be in the firing line as was our only boy, He chose not to have any tests at 18 and still now 4 years down the road still doesn't want to know. We were told that if one of the other siblings show signs it will mean their children also like our boy possibly have a chance of inheriting due it the gene being passed on.
    These are worst case scenarios and as far as I am aware none of the siblings/children have requested a test as like me I would really rather not know. At the end of the day its down to personal choice not something anyone would want for sure and like me now its something I have to worry about on top of whats happening to OH.
    Still keep smiling and plod on its all most can do even in the face of overwhelming grief its the only thing you can do :) .
    Baz
     
  11. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    67
    Scotland
    Hi this rang a bell.
    My husband has mixed dementia, very advanced now in a care home.
    I felt so helpless as I cannot look after him anymore.
    I saw an advert for the Glasgow Memory Clinic, wanting volunteers for research into genetic links in Alzheimer’s.
    The test is a mouth swab, but before this is taken there is an interview to determine how you would react to your result.
    I decided I would rather know, having seen my husband’s decline. Plus I hope a cure can be discovered in the future
    Obviously he will not be tested, but my result shows that it is not so likely that I will develop this disease, which also means that our children will not necessarily be effected.
    However I understand that lifestyle has a large effect on developing dementia, so even if you have a result that would show a high possibility, if you can improve your own health, with exercise and diet, it improves your odds.
    And this applies for everyone, to reduce the risk.
    Remain positive and try to keep a healthy lifestyle so even if you don’t go for genetic testing it should help you and your family.
    Wishing you well, in every sense of the word.
     
  12. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    442
    Chard, Somerset
    I think I would want to know so that I could take action now to secure the future BUT, once the deed is done you have to declare this to insurers, mortgage lenders, etc. I am in a fortunate position of not having a mortgage and I don't have any life insurance because there is only me. However, if I had the test and it proved I carried the gene, how do I know who this information would be sold on to? Would I be opening myself up to all the scammers and fraudsters to whom I so very carefully showed the door and protected my mum from over the years?
    With the research that is going on at present I think they are only a few years away from finding a 'cure' or at least preventative measures so hopefully we will be saved the difficult decision.
     
  13. marionq

    marionq Registered User

    Apr 24, 2013
    5,328
    Female
    Scotland
    I am interested in all of your opinions but disagree on one. With inherited Alzheimer’s I don’t believe for one second that lifestyle choices can prevent it. The same is not true for vascular dementia.

    My husband was a slim, non smoker, moderate drinker, very active man, who had a real love of languages although he worked as a carpenter. He qualified for university entrance in French, German and English but didn’t take up a place as we had three daughters all doing degrees at the time. He continued to study adding Spanish to the mix. His eating and living habits were exemplary but his father and grandfather had glaucoma and Alzheimer’s and he has inherited both. Unavoidable.
     
  14. crazyerduck

    crazyerduck Registered User

    Jan 3, 2019
    16
    Hi @Fullticket, I'm keen to understand, do you have to declare the results to insurance companies / mortagages / financial loan companies? As for the information I've been given, there is a moratorium in place until the end of this year (it gets reviewed and extended every 2-3 years) that companies up until the sum of £500,000 aren't legally allowed to take into account or ask you for the results of a genetic test, which I also found when googling and reading things like the agreement between the government and the Association of British Insurers (ABI) on the use of genetic test results in underwriting insurance policies.
     
  15. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    442
    Chard, Somerset
    Hi Marionq - I was not so much talking about lifestyle choices but the research that is going on at the moment regarding clearing away the tangles in the brain with medication and something I read over the weekend about a preventative drug they are trialling (on mice at the moment I think). I can't remember what it was in connection with as I have only skimmed the papers and not had time to sit down and read them properly.
    Hi Crazyerduck - I was more concerned with what the genetic testing companies might do with the results, i.e. selling on the information. Insurance companies don't normally ask for these details and, as the mortgage is fully paid up and don't have any loans at the moment, I can't comment on that side of things.
    Sorry if I have been waffling and not making myself clear.
     
  16. crazyerduck

    crazyerduck Registered User

    Jan 3, 2019
    16
    Hi @Fullticket thanks for clarifying - I'd be absolutely shocked if the NHS sold on results of genetic tests, are you talking about private companies or could the NHS do that?
    Thanks
     
  17. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    442
    Chard, Somerset
    I think that some NHS trusts do employ private companies to do their tests for them - all sorts of things, not just genetics. Someone else may know more but I think it can put a lot of services out to tender - and not just cleaning and waste removal.
     
  18. crazyerduck

    crazyerduck Registered User

    Jan 3, 2019
    16
    Thanks Fullticket, it's good to know that as it's something I ask before I take the test, if I do take it.

    @JessL87 as mentioned previously I am going through genetic counselling so if you've got any questions please just ask :)
     

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