1. Welcome to Talking Point - an online community for everyone who is affected by dementia. Whether you have dementia or know someone who does, we will be there for you.

    Sign up to join the community, or Log in if you're already a member.

    If you need help using Talking Point, read our Help pages or contact us at talkingpoint@alzheimers.org.uk

  2. Hi everyone, Talking Point is back! We’ve updated the software in order to improve security, design, and the way the community works, and introduced some helpful features.

    Find out more

Familial Alzheimers

Discussion in 'Younger people with dementia and their carers' started by Vara, Nov 20, 2016.

  1. Vara

    Vara Registered User

    Dec 31, 2015
    #1 Vara, Nov 20, 2016
    Last edited by a moderator: Nov 20, 2016

    Familial Alzheimers - my daughter aged 33 possibly started already but has had blood test and has her father's gene. How to tell my son? Left it late, he is 30 now but I have know about this for 20 years. Does anyone have any advice?
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hello Vara and welcome to TP.

    I'm so sorry to read about your situation. I have no experience of this myself but I hope some other members who do will post soon.
  3. Rich PCA Carer

    Rich PCA Carer Registered User

  4. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    Personally, but depending on his temperament, I would tell him and encourage him to be tested.
    You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

    We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.

    Have a read through
    https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=168 which includes

    Attached Files:

  5. Vara

    Vara Registered User

    Dec 31, 2015
    #5 Vara, Nov 20, 2016
    Last edited by a moderator: Nov 20, 2016
    Thank you very much, I didn't know this website existed, I am looking into it.
  6. Vara

    Vara Registered User

    Dec 31, 2015
  7. Claire Mary

    Claire Mary Registered User

    Nov 21, 2016
    Citizen of the planet.
    When is the question?

    My mom passed earlier this year. After indepth investigation, I uncovered that her twin brother had famelial Picks Disease and sister and mother too died of this early onset rare frontotemporal dementia.

    I am looking to get tested myself. My husband and I have 12 year old twins.
    After much deliberation, I have decided that I need to know for myself as I am 42 now, and still have a way to go before our boys become independent. I am not going to test my children as this will completely devastate me knowing their fate at such a blossoming time of their lives. I choose to rather keep my eye on them from a distance as they become young men and be subtly aware of behaviour changes that may signal early onset. I will only tell them if I suspect, test and know for sure. Because once you know it is the end of the world as you know it!
  8. Claire Mary

    Claire Mary Registered User

    Nov 21, 2016
    Citizen of the planet.
    Dont tell him!

  9. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    Tell him before he had babies.

    If he had, genetic doctors can help to select spermatozoa that won't give it to babies.
  10. Vara

    Vara Registered User

    Dec 31, 2015
  11. Vara

    Vara Registered User

    Dec 31, 2015
    I didn't know this, thanks, I will look into that if necessary.
  12. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    Lowestoft, Suffolk
    I have the familial AD gene in my family too and didn't find out until my mum became ill. Her father who had it walked out when she was little so they didn't know that he developed AD at a young age as well as many of his siblings. As a person 'at risk' I would want to know of that risk. If you contact the Rare Dementia Support they will be able to talk to you about it. From various speakers that have been at the Familial AD support group it seems that being open and honest and giving age appropriate information is the best way forward.

    I have chosen not to be tested and your son may choose not to find out if he has the gene mutation and that's okay, it has to be his choice and he can change his mind at any time. There is a little Facebook group for people that are affected by Familial Alzheimer's Disease (worldwide) that you or he might like to join too. Lots on the group, including myself, are taking part in research and drugs trials which has really helped me to focus on something positive.

    My daughter is 16 and she has known for about 5 years about my risk of getting it. She also knows that if I get it, she could too. We talk openly and honestly and she knows that she can ask me anything and I will give her an honest answer. I would much rather she came to me for information than to start googling and frighten herself and keep it all to herself. More people at risk choose not to get tested than get tested at the moment. I'm sure that would change if there were a disease modifying drug.

    My daughter sees me happily going off to London each month to take part in the drug trial, she sees me crying when I've had a post lumbar puncture headache, she sees me doing media stuff about Alzheimer's (always with her approval) and she sees me sobbing when I'm sad that other members of my family are becoming symptomatic. I want her to see all of this to show her that it's okay to be happy/sad/angry at various times. She mostly sees me getting on with normal life which is mostly what she is doing too. I'm pleased that I have managed to make something very sad and upsetting normal and okay to talk about and have feelings about.

    I wish you luck with whichever decision you make and feel free to message me if you want to chat.

  13. vanman

    vanman Registered User

    Jan 3, 2017
    Thought provoking

    My mum died of dementia and I have my own worries - found this very useful, thanks for posting
  14. Theodor

    Theodor Registered User

    Jan 21, 2017
    #14 Theodor, Jan 21, 2017
    Last edited: Jan 21, 2017
    If I were in his shoes I'd appreciate it if I was told about it sooner rather than later. It may be bad news, but keeping it from him until it's too late would only make it worse. Not sure how you should break the news to him or what explanation you can give as for waiting so long, but I believe he has the right to know and should be made aware of it.
  15. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    #15 Shedrech, Jan 21, 2017
    Last edited: Jan 21, 2017
    hi Vara
    interesting info here
    I guess it's down to your knowledge of your own family

Share This Page