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My dad was diagnosed when I was 15-worried about genetics

Discussion in 'Younger people with dementia and their carers' started by PhilippaL, Apr 19, 2017.

  1. PhilippaL

    PhilippaL Registered User

    Apr 19, 2017
    This is quite a selfish post but I feel it's probably the best place to say it. I obviously care very much for my dad, he was diagnosed when he was about 52. It is tough, especially as my sister and I are at uni and we have the guilt a lot of you guys on here feel. I don't want to worry anyone and there's no definitive answers to this, but does anyone else worry that they're also going to get it? My dad has been genetically screened and both tests came back negative, but I know that can mean there's a gene he has passed on they just don't know links to the disease. I think there's such a thing as knowing too much.. I do neuroscience at uni which probably makes me a bit of a hypochondriac. I don't really know what I'm asking for - maybe just knowing I'm not the only one who worries about this stuff. Again I don't want to make people anxious, just because we have parents with dementia doesn't mean we will get it, I'm just a huge worrier.
  2. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hi PhilippaL
    I doubt if this thought hasn't popped into the head of every carer at some point, whether or not related by blood to the person they care for and about
    I'm older than your dad and know that there has been Alzheimer's in the family, other than my dad - but my dad's is a big family and some one of us has had pretty much anything you can name - maybe that makes it easier for me to not give it much thought - that and I just can't live my life wondering what may happen when there's so much to do to deal with what is happening - and, actually, too much to look forward to despite the cloud dementia tries to glower over everything - I feel if I let myself worry then I let dementia take that bit of my mind; and it's taken enough by stealing away my dad, so it's not having any part of me if I can help it
    I agree, sometimes an individual can know too much - your dad's screening came back negative; that's pretty clear - who knows what links will or won't be found, and most are indicators of a greater 'risk', none really say 'you will for definite'
    there have been members who've written about this, so a search may find what they thought
    I hope writing your post has got this concern off your chest - and with a lighter heart you can have a good night's sleep
    best wishes
  3. Beate

    Beate Registered User

    May 21, 2014
    "No amount of anxiety makes any difference to anything that is going to happen."

    You are very young - way too young to worry about an illness you may never get. You might get cancer instead. Or not. You might get run over by a bus tomorrow. Or you'll die in your sleep at 101 years old. To quote Doc Brown: The future isn't written yet. They might find a cure for dementia way before you are old enough to get it. Life is unpredictable. You see, there are two kinds of worries - worries you can do something about and worries you can't. This falls into the latter category, and if you let it dominate your life, sooner or later it will crush you. If you can't let go of those worries, try and get some counselling - cognitive behaviour therapy is good. You can learn how to keep worries at bay and concentrate on the good things in your life.
  4. PhilippaL

    PhilippaL Registered User

    Apr 19, 2017
    Thank you so much for all your replies. Sometimes a bit of reassurance is all I need - I know I'm being silly to worry about this sort of stuff so early. Rang the doctor today and getting referred for some counselling so hopefully that will help. Your replies did make me feel better this morning, thanks again x

    Sent from my iPhone using Talking Point
  5. CL90

    CL90 Registered User

    Oct 28, 2016

    My mum was diagnosed at 55 and I can say this has crossed my mind. I've almost wanted to be tested myself, before thinking about marriage and children as if I was to have it I would hate to put my partner and my own children through this. I feel very selfish for thinking like that but it is a massive concern. My nana also has it at 90 but she is my dads side. I'm so glad I'm not the only one who thinks this.
  6. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    This crosses my mind a lot. My dad was diagnosed in his 50s and probably had it 5-6 years before that. His mother and aunt also had dementia.
    I also worry because my mum died at 60 and her mum at 62 (both unrelated to dementia).

    I don't know if I'll do genetic testing. I am mindful that thinking about it whilst being unable to do anything about it will just make me anxious.

    If I get to the point where I consider having a family, I'll probably revisit the idea of genetic testing.
  7. cheyelise

    cheyelise Registered User

    Aug 17, 2017
    i worry about this too

    i’m only 16 but both my dad and my grandad had dementia. i know it’s silly to worry about whether i may inherit the disease because i’m still so young but it does cross my mind every now and then. i’m glad i’m not alone.
  8. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    I think Shedrech is right. Anyone who has ever had close contact with dementia, is left with that niggling worry "what if". But as a guy I used to know had a habit of saying "What ifs are downers!" :D There are things that might happen that we can do nothing about. There are things that we can influence. For example, my mum's family on her dad's side were all dead by the time they were in their early 40s, including her dad, from sudden heart attacks. When mum was in her late 30s, she was getting very breathless climbing stairs, although she'd always been very fit. Tests revealed the cause, and the likely cause of her family's deaths. Familial cholestrol problems, producing blocked arteries, and thus heart attacks. Mum had been caught just in time. And, crucially, statins had just been introduced, and she's been on them since. She's now 80.

    With dementia, we know certain things: We know that sometimes no matter what, someone just gets it. But we also know that there are things that (for most people) will lower their risk: Weight control and maintaining physical exercise; keeping an active mind; a good diet with plenty of fruit, veg and healthy fats; making sure we are getting enough of certain vitamins, particularly the B vitamins. etc. These days, I would add to that list, taking regular time away from technology and get outside into nature. Things we should all be doing anyway, but are often sadly neglected.

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