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Other people with the genetic form in their family

Discussion in 'Younger people with dementia and their carers' started by Suzanna, Dec 6, 2007.

  1. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    hi everyone,

    just a quick note - my mum has the genetic form of alzheimers and i would really appreciate hearing from anyone out there that is in the same boat.
    i'm only 23, have no partner for support and am struggling to decide whether i am brave enough to go for a genetic test so it would be helpful to hear from anyone who has been in the same situation or currently is...


  2. jc141265

    jc141265 Registered User

    Sep 16, 2005

    I'm surprised that they were able to tell you that your Mum has the genetic form unless its obviously apparent because others in her family have also had the disease. When Dad got diagnosed they told us that it was possible that it was genetic, but were not able to say for sure...as he has no history in his family of anyone else having had the disease, fingers are crossed that it isn't that one.
    Nonetheless I was quite afraid for some time that it was and had considered having tests done, because personally i would prefer to know (it does however seem to vary from person to person with regards to whether they want to know)...where I am though in Australia it doesn't appear to be very easy to get information on how you could get such a test done and whether the results would be conclusive anyways, so in the end I gave up.
    Also, as both my brother and sister were adamant that they did not want to know, I was quite concerned that if I did find out it was genetic, how would that affect them...I would not only be making the decision for myself but in a way them too...possibly I could get it done secretly and not tell them the results if it turned out I did carry the gene...but that would be a difficult thing to decide also.
    If I were in your shoes though, and knew for sure that my parent had a genetic form, I don't think I would hesitate to find out for myself. For me I would want to know because then I could be prepared, I could lobby for support and funding for research and improved health care for dementia sufferers and I could make sure I did enjoy the time I did have before the disease set in.
    Others on here I am sure however will have an entirely different opinion...
    I think it really depends on your personality type...

    Best of luck either way...

  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Suzanna

    When my mother was diagnosed with Alzheimers, her GP, who was mine also, said he would `keep an eye on me`. No one actually said it was genetic, it was just thought it might be. Have you been told it is genetic or have you been told it could possibly be?

    I have done nothing about it.

    There is no cure for Alzheimers so I wouldn`t want to be tested just for the sake of knowing. Nor would I be able to enjoy the rest of my life if I had something like that hanging over my head. And if I were more likely to develop it, I wouldn`t want to waste part of my precious life campaigning for more research into finding a cure. Research can only move at a pace compatible with the researcher`s knowledge and intelligence.

    As it happens, it is my husband who has developed the condition, no genetics there. His family is long living and the only genetic threat to them is Glaucoma.

    Of course this is my opinion only and we all have different feelings.

    But please don`t waste the rest of your life Suzanna worrying about what the future may or may not bring. You could be knocked down by a bus tomorrow. [I hope not] :eek:

    I`m really sorry about your mother, but you are far too young to belive your life is over yet.

    Love xx
  4. connie

    connie Registered User

    Mar 7, 2004
    Dear Suzanna, I have a very dear friend whose husband was diagnosed when he was 51 with an hereditry form of AD.

    His father had died with the desease and his sister was in a care home, also with this illness.

    They have 3 children whom they told the full story. The children have opted not to be tested. One son said "Your life changed mum once dad's diagnosis was confirmed" "I want to just live my life - if it happens, it happens"

    Think their attitude was that as there is currently no major advancement in medicine they would just bide their time.

    Incidently the brother and sister who do have the desease have 4 more siblings.

    Don't know if this helps or not, but please try not to worry.
  5. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    thanks for peoples responses-
    unfortunately we have been told conclusively that it is the genetic form, no maybes, which in my book is very different from "there is a chance it's genetic". When it was just a chance, it was a worry but i could but it to one side and get on with life. Now i know it is definately genetic and i have a 50:50 chance of carrying the gene it's really not that easy to put it in a box and keep the lid locked!
    if i don't get tested then i live as i currenty am, with it hanging over my head, keeping me up some nights and just generally making everything a struggle. Or i get tested, and there is a chance i can lift the cloud and feel normal again, but a risk that it will end up weighing on my mind even more.
    i've been to see a genetic counsillor but they could only 'fit me in' for two sessions until January, so now i'm just trying to figure it out on my own.
    i would love to meet someone who has been brave enough to go ahead with the testing, because i think deep down that's what i want to do, i just need to find the courrage!
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Please accept my apologies Suzanna for doubting your word. You have a big decision to make and you are the only one who can make it.

    I haven`t yet heard of anyone on TP who has undergone genetic testing, but if there is, I`m sure you will soon have a response.

    Take care

    Love xx
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I think when you're considering genetic testing you have to think whether you would or could make changes to your life. You don't hae children - would a positive test mean that you wouldn't have children, or would you perhaps consider adoption or an egg donor? What if you didn't have the test - would you share the possiblity that you had this disease with a future partner? I do think that not having the test, or ending up with a positive result, is going to colour your life in so many different ways. This is very much my own personal opnion, but I think if I was in your situation I would HAVE to have the test, because if I didn't, I'd end up living my life as if I was positive anyway: not having children, telling prospective partners etc. Also, I'm the sort of person who simply wouldn't be able to put it out of my head, while I do better if I have something tangible to fight against.
  8. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    thanks for the further responses.
    i do know that it is ultimately only a decision i can make. and i think i know that i'm going to be tested. mainly because if i want children in the future then i couldn't do that without knowing if i had the gene - it just wouldn't be fair. i wish more than anything that i didn't have to make this decision but that's just not life i guess!
    thanks again for people support.
  9. katherine

    katherine Registered User

    Sep 5, 2006
    just a quickie... how did you find out that your mother's alzheimers is genetic for sure? has she been tested?
    I think you should follow your instincts - you know inside you what you should do....
    all the very best
  10. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    Hi Katherine,

    i'm not sure of all the biology and science behind it, but yes, mum was tested (a blood test) and they identified a defect (i think) on a specific gene which has been recorded in all (not that there are many) of the other cases of familial alzheimers.
    do you ask out of interest, or has it been put forward that this may be the case for yourself or someone you know?
    thanks for your support, i think i'm going to have the test and just hope hope hope i don't have it... maybe i'll try and finish off the degree first though.
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Hi Suzanna, sorry to butt in but genetics always fascinate me as an adopted person who until their 30s had absolutely no 'family medical history'.

    'Crystal ball gazing' (as I see it) for my own sake never mattered, but I absolutely understand that having or even thinking of having children of your own is a huge prompt ..... I underwent genetic counselling and tests (Jimmy's, Leeds) when I was pregnant (unexpectedly!) as there was a very high risk because of my partner's family history coupled with my 'unknown' that our child might have cystic fibrosis. Those tests were prompted by the immediate concern of how to address the best care for our child even pre-birth should there be a chance of CF.

    What I have to say as a word of caution - (and I am making the assumption here that the same applies about most other genetic testing) is that it does not appear conclusive - i.e. yes, a defective gene may be identified but does not necessarily mean that a person will go on to develop the disease being tested for. Even after testing and counselling, we were still only presented with 'odds' . I felt strangely disappointed and more worried that genetic testing is not conclusive and to be honest was quite a pointless exercise in our individual circumstances (I appreciate this is general and not Alz specific). I am not a gambling person but I felt rather like I had attended a 'bookies' - no answers, no tips, just quoted the odds and told to keep fingers crossed ......

    You could undertake a test which sets your mind at rest about Alz - but then are you going to worry about any other disease you may carry a 'defective gene' for? You could find the results indicate you are at risk - but then you are still only 'at risk' - there is nothing definite - so you will still worry ..... Unless there is an immediate purpose and need for screening I have to question , "Why?" (with apologies to all the terribly wonderful genetic counsellors out there)

    Methinks we all are carrying some 'defective genes' - we all all going to meet some demise - and if we worried too much procreation would cease!!!!!!

    Final thought - there is an important distinction to explore about 'carriers' .......... (my husband was known to be a CF carrier (hence the high risk) although not a sufferer but I am neither of those - hence my genes 'blocked' his and my child is healthy). There are just so many equations in genetics ........ but unlike algebra I personally don't believe we have yet reached the point of finding definite answers ....... and certainly not with Alz .....

    Just my thoughts, love, Karen, x

    (PS: Good luck with the studies!!!!!!)
  12. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Thats interesting what you say Tenderface because that is the impression I got when i was investigating the possibility of having a gene test done...that even if I did get it done...that i'd still not know for sure that I would get the disease...and that to me did seem a little bit pointless...never having been a gambler..:p
    If there was a definitive test, then i'd be all for the testing because personally I think with that kind of motivation behind supporters the quest for a cure for dementias would be far quicker...if I knew from an early age that I was going to get it, my god would I be lobbying for stem cell research, pushing for more funding, etc etc...and I would feel that it was worthwhile because even if it didnt cure me, my pushing would help progress the cause just that little bit faster.
    The sad human fact is whilst everyone keeps thinking 'it could never happen to me' the cause is not a priority, and even for those of us who have seen it close hand, often you feel so exhausted and feel like its too late anyways, so the cause again does not get the push it needs.
    Anyways I am off rambling about looking for a dementia cure when this is about genetics...so I'll shut up now. :eek:
  13. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    thanks for peoples further posts.
    in response... people have mentioned that genetic testing may not be able to give yes/no answers, only further odds - i was hoping that this was the case, and that if i am found to have the defective gene my mum carrys it just increases my odds of developing it (even if it were to 99.9% it would have given me that little dash of hope)however when i tried to suggest this to the genetic counsillor and some neurology man they said that in all their experience (and i quote now..) "no one who has been found to carry this gene has ever not gone on to develop the disease" i tried to push it saying that surely they can only ever be 99.9% sure but was firmly told that to let me believe that would be giving me false hope.
    i'm not sure if it is a specific form of the gene that makes them so sure that genetic testing would be definitive?
    either way, doens't look to good from where i'm sitting!
  14. jc141265

    jc141265 Registered User

    Sep 16, 2005
    It must be a very specific form of dementia that your mother has Suzanna. Sorry none of us are very much help to you. One thing I can say that might help is that I found that for the first 10yrs that Dad had dementia I was absolutely terrified that I would also get it because I found everything that happened to him so horrific and shocking. But now for some reason I have come to peace with it...maybe its because I am so used to it, so used to all the behaviours being an everyday thing. I am not saying its not a horrible fate, but I do think that it can become far less terrifying if you have had your own experience with it.
  15. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    This is a very difficult issue and I don't envy someone in this position - I am sure I would feel I was between the devil and the deep blue sea. However, I don't think anyone else has mentioned this, but you may well have thought of it Suzanna - insurance. Could having a positive result affect your ability to get insurance now or in the future by meaning that you were unable to get it or had to pay substantially loaded premiums?

    Does the form of dementia that your mum has generally strike people at a relatively young age? If it doesn't then there is also the fact that science is progressing all the time and in the future there may well be a means of prevention or cure for dementia - we can only hope and pray that there will be.

    I suspect you will have come away from here with more questions than answers Suzanne! It is a decision only you can make and I wish you luck with it.
  16. Cymbaline

    Cymbaline Registered User

    Aug 23, 2007
    Hi Suzanna

    Sorry to read about your troubles. I too live with the fear that Alzheimer's is genetic in my family (it's never been checked out). My mum has it as did her mother before her. However, I've decided that even if I was offered a test, I wouldn't take it.

    I'm a bit older than you but I'm doing my best to live a normal life. The way I look at it, I've still got plenty of good years ahead of me in my life and I don't want to throw them away because I might develop Alzheimer's. I think I might leave off the having kids bit though but as it happens, that doesn't bother me.

    Don't forget either that it's not just from your mother that you get your genes. I look at my father's family - both of his parents had good minds until they died (well, that would put a stop to it, wouldn't it? :D). Also, my mother's other siblings are still OK and haven't developed anything. Does your mother have any siblings?

    I'm also hoping that there will be a medical breakthrough. There's lots of money being pumped into Alzheimer's research. Who knows what might have been discovered by the time you get into your forties?

    Have you tried talking to a counsellor about your dilemma? I don't know if you've ever heard of Huntington's Disease. It's a horrible neurological disorder which has that awful 50:50 statistic as well. Before anyone goes for the test, they have to go for counselling sessions. I think you really need to talk to a counsellor before you go near a tester.

    I wish you all the best with whatever decision you make.
  17. Claz

    Claz Registered User

    Mar 16, 2007
    Hi Suzanna

    My husband is in your position. He is 31 and his mother has had alzheimers for about 4 years she is 50, her father had it before her. We have been told by the doctor there is a 50:50 chance of inheriting the gene, and testing is pretty much 100% conclusive. I know from personal experience what a horrible situation it is and the trauma of whether to test or not. I get very down about the whole situation but i try not to dwell on it as there is no point, you have to just make the most of now!

    My husband has always pretty much known he doesn't want to test though we debated over it for a good couple of years. He would rather make the most of life now, we also stressed over whether or not to try for children, it wasn't an easy decision but we are now expecting a baby. His brother however always knew that he would want to test - he did this recently and luckily found out he didn't have the gene.

    I advise you have a look on the huntingtons website as there are alot of debates on their forum about whether or not to test, the chances of inheriting are the same so alot of what is said is relevant to our situations.

    Good luck with whatever you decide to do!
    Caz :)
  18. zed

    zed Registered User

    Jul 25, 2005
    Wow Suzanna what a difficult choice to make. It is a pity that there is no one on this forum who has gone for the test.

    There is a type of dementia called Pick's disease than mainly affects people in their 50s and 60s, and is often genetic. There is an account on the Pick's Disease Support Group website written by a woman who did have the genetic test. You can read it at: http://www.pdsg.org.uk/caregiver_stories/test_for_frontotemporal_dementia/

    I have met a woman in her early 50s whose family have the Alzheimer's gene. She decided not to have the test to see if she has the gene as her attiude is "what will be will be".

    When my Mum was 57, she was diagnosed with Pick's disease. A couple of years later Mum's diagnosis was changed to Alzheimer's, which is also often genetic and if it is the genetic form that my Mum has, then I have a 50% chance of having it too.

    Mum is the only member of her family who has young onset Alzheimer's. Her mother had Alzheimer's in her 80s, but we were told this was just a coincindence, and not an indication that Mum has the genetic form. For various reason, the family have lost contact with other members of the family such as great aunts etc so we don't know if other relatives have or had it.

    However, mum's father died in his early 50s, so there is a chance that he may have had the gene but and would have had Alzheimer's if he had lived for longer.

    I decided not to have the genentic test as I don't think I could cope with the certainty of Alzheimer's hanging over me. I can cope with an "if".

    I wouldn't let any of this stop me from having children. If you want children, go for it. Even if you do have the genentic form, you will have many many years of happiness with your children. And there could be a cure for Alzheimer's before they get to that age, or indeed before we do.
  19. katherine

    katherine Registered User

    Sep 5, 2006
    I think i understand the surity of the test. If you have the gene you will def get Alzheimers, but if you don't there is still a chance you might get it from other reasons - so i suppose if you are genetically tested they can predict with 100 percent certainty you will get it, but can't say for sure you won't - but they can probably be sure that you won't get the hereditary form of it. Does that make sense? waffle waffle....
    Suzanna - you asked if I was considering it too - My mum has Alzheimers and no one else in our family does but we have no idea who her actual father is so for all we know his side of the family could be riddled with it. I've thought about trying to find out - initially i suppose by getting mum tested for the hereditary form of it, but i'm too scared really now.
    Also after 5 or so hellish years my mum is being cared for at home brilliantly and i feel that she's happy - i know she is - I feel that it wouldn't be so bad to get it myself now - I suppose i've come to terms with it, and that means i don't really want to be tested. If they come up with treatment or a cure then i will be tested.
    But if i knew mum had the hereditary form i may well be feeling differently.
    Whatever you do - make sure you really think it through - and whatever the outcome, make sure you live your life to the full....
    you have to do what you have to do...
  20. rudolph

    rudolph Registered User

    Feb 19, 2007
    Gene dilemma

    Hi Suzanna,
    I've been reading this thread with interest because I'm in pretty much the same situation. I'm 27, my mother is 54 and in the advanced stages of Alzheimer's. Her mother also had early-onset Alzheimer's and it has been put to us that there is a good chance it is genetic. I have read a lot about the familial form of the disease so I know exactly what you're talking about. I think a lot about genetic testing - a large part of why I haven't is because I'm not sure how to go about it. I think if I got a positive result I would certainly not worry about pensions and the like but I'm not sure how it would affect medical insurance and mortgages and things. Mostly negatively, I presume. They are just practical matters but I think normal living might be much curtailed by a definite positive result. I guess I still don't know. Maybe the fact that I've thought about it for a few years and still not gone through with it answers my question for me.

    I have decided to definitely not have children because I could never bear for them to go through what my siblings and I are going through. My partner knows about the possibility that I may inherit the disease. I make an effort to see as much of the world as I can just now and to do things I enjoy so that if my life is a bit shorter I'll have packed a lot in!!

    Only you can ultimately decide what's best for you and your situation. You have loads of time to think about it - knowing next week won't change anything. If your mother's diagnosis has been recent, take time to let it sink in and let some of the emotion diffuse from the situation. You can't make life-changing decisions when you're upset. Give yourself some time.

    I'm sorry you have to go through all of this. I hope I've been of some use. Good luck.


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