1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Burke Elizabeth

    Burke Elizabeth Registered User

    Hello, this is my first post. I have been caring for my sister who has Downs syndrome for the past twenty years. She is 47. Up until a few years ago she worked every day and had a busy social life. If I would have known that 25% of Downs develop Alzheimers I would have looked for the symptoms, but I thought, when she started to slip it was all part of downs. A year ago she was put on a drug called Aricept and she began to remember things she had forgotten. This past summer she started to have seizures and the doc put her on a drug called Tegretol. It controlled the seizures but she lost so much. Today she is wheelchair bound, incontinent and must be fed and dressed, total care. If it were not for Ontario Disability Support Program, she would have to be institutionalized. It's a rough go but she is content to be at home and it was a promise I made to my mom. Looking forward to some discussion on any information available. It's so hard to get straight answers from the Doctors. Thanks
     
  2. Colin Cosgrove

    Colin Cosgrove Registered User

    Dear Elizabeth,

    I’m sorry to hear about your sister – unfortunately, as you say, it’s not uncommon for people with Down’s syndrome to develop dementia as they grow older.

    The Alzheimer’s Society has an information sheet on learning disabilities and dementia, which may give you some of the information you are looking for. To look at the sheet, go to http://www.alzheimers.org.uk/Facts_about_dementia/Risk_factors/info_learningdisabilities.htm I know that the Down’s Syndrome Association in the UK also produces a very good booklet about dementia, which can be downloaded from their website. The following link should take you directly to the booklet: http://www.downs-syndrome.org.uk/pdfs/DS & Alzheimers.pdf If there is any problem, the website for the Down’s Association is www.downs-syndrome.org.uk

    I am sorry that the seizures seem to have affected your sister so badly – is the Aricept still helping at all? It might be useful to ask her doctor about the drug Ebixa, which I believe has been conditionally approved for use in Canada. It is a relatively new drug, and I’m not aware of any studies on its use in people with Down’s syndrome, but as a treatment for people in the middle and later stages of Alzheimer’s disease, it may be helpful.

    I hope that’s some help anyway.

    All the best,
    Colin.
     
  3. Burke Elizabeth

    Burke Elizabeth Registered User

    Thank you Colin for replying to my post so quickly from across the ocean. I am so happy that I found this site. It is amazing how internet connects the world. Thank you as well for the info links. I have a nurse in with Jane right now which gives me the chance to work on the computer. The Aricept did work until Jane was put on this Tegretal to control the seizures. The nerolgist, I think I spelled that wrong but anyway he seems to think that Jane suffered a stroke while having on of the seizures, and she does tend to lean to the left and clenches her right hand a lot, sigh. The Teg. stopped the seizures, 3 months now but her rapid decline is apparent. I don't really know if thats because of the Teg. or the Alzheimers. Getting info from Doctors is a really hard thing to do here, you see there just isn't enough physicians to meet everyone's needs. They graduate here in Canada and head south of the border, It is nice to have free health care for sure but it's the lack of care and availability that is frusterating.
     

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