1. katherine

    katherine Registered User

    Sep 5, 2006
    57
    My mother is 59 and has alzheimers disease. She was diagnosed about three years ago now and it was a terrible shock to us all as no one else in our family as far as we know has suffered from it. However, we don't know mum's biological father. I always wonder about this.
    If someone has early onset alzheimers what are the chances that it is the hereditary strain of the disease? Does anyone know?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    my wife was 50 when early onset Alzheimer's hit her.

    There was no family history at all of dementia.

    I have never understood that early onset is genetic from anything I have read though I know this has been quoted recently from Alzheimer's Society documents.

    For my part, I would prefer to worry about, and cope with, the challenges that the condition presents, rather than worry about the probabilities of ... well, anything really in this area.
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    My view

    Hmm, how come then, everything I have ever been told since the day we found out about Dad's diagnosis is that early onset is predominantly hereditary?

    The doctors told my parents at the time though that we shouldn't worry too much because by the time us kids were old enough to be at risk there would be a cure...yet time it ticking onward and still we seem no closer to such a miracle.

    The following website
    http://www.mayoclinic.com/health/alzheimers/AZ00009
    for example states:

    "A significant proportion of early onset Alzheimers is linked to three genes...."

    As I have read it, unlike ordinary alzheimers where you can carry a gene susceptible to Alzheimers but still have a good chance of not getting it, with early on-set if it is the genetic variant, you tend to have a 50-50 chance of getting it.

    That is IF it is the genetically caused early onset Alzheimers.

    Usually if it is not evident in the rest of the family however you can relax.

    There is still the possibility although extremely unlikely of what is called a 'de novo' mutation of the genes meaning your parent could be the first in the line to have dodgy genes...in which case it sucks to be their child. There is also the possibility that one of your family members lied about your parents' paternity/maternity (don't roll your eyes it happens, haven't u seen Jerry Springer?!) and thus the reason noone else in the family has it is because your parent's biological relatives with the genes were never known.

    I know many people don't want to know about all this stuff but as you can tell I DID want to know,...so have looked into it quite a while. I'm terrified of having what has happened to Dad happen to me.

    I do get annoyed too at people telling me not to worry, I don't need to worry, I am being silly for worrying. Saying all that is as silly as telling someone who has seen someone burnt alive not to feel nervous every time they smell smoke or see matches. Instead of telling me not to worry, I'd like a few people to start saying, "Nat I completely understand why you would be worried, all the more reason to focus on enjoying life now!"

    Worrying can become an obsession. Worrying can help take your focus off your utter despair and sadnes. Worrying can give u ulcers...if more people did worry, maybe there would be a greater push for funding and research.

    So my point is:
    *Be careful of becoming obsessed;
    *Recognise that you may be becoming obsessed because you are subconsciously avoiding dealing with your other emotions;
    *Worry is not healthly but it is completely understandable;
    *If you are worried, focus on making that worry productive by either enjoying life now just in case your worry proves right, or by pushing for society to do something about this disease;
     
  4. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    This is something I worry about too. My mum was 57 when diagnosed.

    For people who have early-onset (under the age of 65) it is more likely that it is hereditary than for those who get it later on. BUT it is still very unlikely that it is genetic, as in most cases it isn't. Even if your mum did inherit from her father, that doens't mean that you will. The gene isn't always passed on. Also, if it is genetic, it can't skip a generation, so if you don't have the gene, your children definitely won't.

    Do you know any of her father's family? Does she have any brothers or sisters with the same father? Do you know how old he was when he died?

    Nat - I agree with you, I hate it when people tell me not to worry. Of course I worry! It is terrifying to think it could happen to me. My mum's mum had dementia, but in her 70s, and probably caused by strokes, so the doctor said it is unrelated to mum's dementia. But my mum's dad died in his early 50s, so maybe he would have developed it if he lived longer, and therefore mum may have inherited it from him.

    However, my mum is the youngest of 4 sisters, and none of them have developed it. There is no other history as far as I know. Therefore it seems mum is just unlucky.
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I'd recommend caution in making one's own interpretation of other people's interpretations of [possibly even other people's interpretations of] research findings.

    Classically the Daily Mail does this all the time.

    Significant to most of us means 'really important'. To statisticians it is not necessarily the case. I quote
    This is from http://www.surveysystem.com/signif.htm

    and
    and
    these from http://www.statpac.com/surveys/statistical-significance.htm

    A common problem is non-statisticians making their own interpretations by misreading [on purpose or otherwise] the language of statisticians.

    All that being said, every time I forget anything I wonder about myself. It's all part of having entered dementia territory, even as an observer.
     
  6. sunny

    sunny Registered User

    Sep 1, 2006
    598
    Not knowing anything?

    Well all this talk about genetics is quite interesting for me. I am adopted so know nothing of my genetic background, my adoptive mother has V.D. so I can see how worrying this can be for people who think they are going to inherit dementia.
    However, I am not sure what I could be worrying about or should be worrying about, am I blissfully unaware!:cool:
     
  7. katherine

    katherine Registered User

    Sep 5, 2006
    57
    hello
    thankyou for all those replies. Defnitely food for thought. yes it is something i can't help thinking about as it may well effect me, my brother and my children, so is not something i can be told i shouldn't worry about. But at the same time - very important not to get obsessed as Nat said.
    Sometimes you can be made to feel a bit selfish for worrying about this as you're basically thinking about yourself when you do - and not thinking about the person who already has it. But christ - let's be human about this - you can't help it - it's very natural to want to understand and know about possible future health problems - especially ones this devestating.
    The thing about statistics is interesting too. It's easy to jump to the wrong conclusions with such vague and different statistics and information out there. All the more reason for some clarity on this.
    Like everyone else - i have masses of other stuff that worries me about my mum and many other things to ask and find out about, but all in good time.......x
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hve sent details of this thread to Lionel's children.

    Harsh maybe, but they do not seem to be at all concerned for their dad, so maybe this will be a wake up call............
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Connie,
    Their indifference to Lionel must be so difficult for you to witness. It is their loss - hopefully one day they will realise the time that they have wasted.
    Love Helen
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Sunny will know....

    I'm with her on this one .... good to find one benefit of being adopted?:rolleyes: ;)

    NOT knowing your hereditary predispositions can relieve a lot of worry - if you don't know what you're worrying about, nothing to worry about...... sure, I feel for my son and his lack of medical background.... but what can I do about it anyway? Healthy diet and living is all that seems to 'prevent' most things preventable.... and won't do any earthly good if they're not (preventable) ..... Que sera, sera......

    No amount of knowldege, worrying, research would have prevented the local (from work) 'Lollipop lady', only in her thirties, dying under the wheels of a bus this week trying to protect the safety of youngsters and their carers crossing a busy road .... and leaving her own two children orphaned.....

    When I can honestly believe my 'hereditary factors' can tell me precisely how my 'end' might be pre-ordained without recourse to the environmental factors and risks I live in and face everyday ... I'll start worrying about it.

    Got enough to worry about right now about caring for those I love in the "here and now" to worry about how I may "go" and who might care for me.....

    Karen, (TF)
     
  11. MARKY P

    MARKY P Registered User

    Sep 19, 2006
    1
    rotherham
    #11 MARKY P, Sep 19, 2006
    Last edited: Sep 19, 2006
    Coincidental

     
  12. sunny

    sunny Registered User

    Sep 1, 2006
    598
    Welcome MARKY P to TP

    Hi,
    Sorry to hear your "mum" has has got Vas.D. My "mum" was given Promazine for her hallucinations (which became quite severe) it did seemed to help, but it does take to time to build up in the body so it was a little while before the full benefits kicked in. They did start her on Aricept but this did not agree with her, side effects too bad. You will get a lot of benefit looking at TP, lots of helpful tips. With this Vas.D, Mum's condition is up and down (she deteriorates quite badly, then improves quite well and so on. She is also very moody and very lethargic, has to be encouraged to do everything (to the point that her personal hygience suffered and also eating and drinking is a real trial). As far as GP's go Mum's is very good very helpful and the local mental heath team have been of great assistance, as well as the AS society but hospitals have been a bit frustrating (she has been looked after by the staff very well on the ward - not faulting that, but the communication to me the carer regarding her condition was to put it mildy very limited despite asking questions. It is nice to get another adoptee on board as of course there are other issues for us that others don't have to deal with and it can be extra stressful at times. Good luck with mum!
     

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