1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Alzheimers and Down's Syndrome

Discussion in 'I care for a person with dementia' started by Helbel, Feb 5, 2016.

  1. Helbel

    Helbel Registered User

    Feb 5, 2016
    5
    Hi there, I'm new to this forum and would be interested in hearing from people who have cared for a relative who has DS and Alzheimers.

    My sister with DS was diagnosed 18 months ago, she is 41 and in a nursing home. I'm feeling a little lost although I am waiting to hear back from the helpline and have contacted the DS Association. The care at the home is amazing but I just need some support during this difficult time to make sure I am doing the best for her.

    Many thanks,

    Helbel
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,593
    Female
    Dundee
    Hi Helbel and welcome to TP. I'm sorry to read of your sister's diagnosis. It must be very hard for you. I know you will find lots of help and support here. Thinking of you both.
     
  3. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,548
    south-east London
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Helbel, welcome to TP
    I've no idea what a combination of the 2 conditions would be like.
    My only experience of people with DS is limited to friends with children who have it and one adult sister of a friend so I'm no expert.
    They say one here that "when you've seen one person with Alzheimer's you've seen one person with Alzheimer's" it doesn't seem affect everyone the same, there are common traits but each is an individual journey.
    My feeling is that she will be as she always has been, but with a quicker rate of decline, but I know nothing so that's just my guess.
    As with the rest of us it's better if you deal with the reality of the person the way they are and forget the labels of DS or AZ, they're just names the only name that matters is your sister's name, sure it's Sis with DS and Sis with AZ but it's still Sis so just do what's best for her as an individual and forget the labels.
    I guess you've been living with her condition most of if not all your life so really you're the expert in what Sis needs and wants, and what's best for her.
    Keep posting
    K
     
  5. Helbel

    Helbel Registered User

    Feb 5, 2016
    5
    Thank you xxx
     
  6. Helbel

    Helbel Registered User

    Feb 5, 2016
    5
    Thank you. I have read that before but I needed to reread it so thank you for posting for me and hopefully anyone else in my position. xxx
     
  7. Helbel

    Helbel Registered User

    Feb 5, 2016
    5
    Thank you so much...yes she's still my baby sister who I adore and always will! She is the teacher and I learn from her...and she teaches all those around her too!!! I just needed someone to tell me all the above, I'm so very grateful xxx
     
  8. Louby65

    Louby65 Registered User

    Mar 26, 2014
    620
    Scotland
    Hello helbel. Your sister is fortunate to have a very caring sister who is looking after her well being . In my experience of people with Down's syndrome , they are very happy and loyal and who thrive on love and affection . In my mums case she has vascular dementia , she is happy most of the time ( especially when she's out in the car) and thrives on love and affection . So for your sister to have both I only hope it means that she has a double helping of love and affection to help her stay happy and safe in the knowledge that her big sister is doing the very best she can to ensure she is well looked after . Best wishes to you both . Lou
     
  9. Helbel

    Helbel Registered User

    Feb 5, 2016
    5
    Many thanks and my best wishes to you and your mum x
     

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