Alzheimer's & Downs Syndrome

Discussion in 'ARCHIVE FORUM: Support discussions' started by mark, May 19, 2003.

  1. mark

    mark Registered User

    Apr 28, 2003
    Hello my name is Mark,
    I work in Sheffield for social services in day services for adults with learning disabilities. Recently myself and a collegue have noticed an increaseing number of service users accessing our service who are displaying the symptoms of early onset dementia. We were aware of the link between early onset dementia and Downs syndrome, and put together a proposal for a Dementia specific day service in Sheffield. We are currently piloting the service for one day a week, with users from a small geographical area of Sheffield. Soon we hope to offer a city wide service 5 days a week. We have recived a lot of support from our local branch of the Alzheimers society and community health Sheffield, but we have still come across many problems. I would like to hear from anyone who has had experience of a service like this, either setting one up or accessing the service. All advice, comments, queries and help greatfully recived. Thanks in advance.
  2. LesleyAnne

    LesleyAnne Registered User

    Apr 1, 2003
    Hello Mark
    you may be aware already of the report from the Mental Health Foundation Learning Disabilities Programme..I enclose the details here.
    Author: Growing older with learning disabilities programme
    Title: Today and tomorrow: the report of the growing
    older with learning disabilities programme
    Publisher: The Mental Health Foundation
    Date: 2003
    Pages: 132 page report plus appendices
    Price: £27.50
    Source: The Mental Health Foundation, 83 Victoria Street,
    London SW1H OHW Tel 020 7802 03000 or

    Summary: This report is about the Growing Older with Learning
    Disabilities programme (GOLD) which is concerned
    with service development and research for older
    people with learning disabilities. It also worked with
    family carers. This report sets out the findings of the
    programme and includes the views of people with
    learning disabilities and their families. The contents
    include: day and leisure opportunities; health care
    and growing older; the circumstances and needs of
    older family carers; planning with families for future
    care; home for people with learning disabilities;
    supporting people with down's syndrome and
    dementia (chapter 7); supporting people through
    terminal illness and death; a charter of rights for older
    people with learning disabilities and for older family
    carers. Appendices include practical guidelines for
    setting up and running groups for older carers; facts
    and figures on older people with learning disabilities;
    a summary of the GOLD projects.
    ISBN: 1903645379

    In addition the Scottish Down's Syndrome Association, (158-160 Balgreen Road, Edinburgh EH11 3AU Tel 0131 313 4225 have produced a booklet for people with learning difficulties about Alzheimer's disease.

    I could not find any details of specific services in our library except for this article in the Journal of Dementia Care
    Author: Rosewarne, Michelle
    Title: Learning disabilities and dementia: a pilot therapy group
    Date: 2001
    Pages: pp 18-20
    Jnl title:Journal of Dementia Care
    Jnl issue: Vol 9 (4)
    Summary: The author describes the development of a support
    group, involving a range of psychotherapeutic approaches, for people with the dual disability of learning disabilities and dementia.

    Please let me know if you would like a copy of the JDC article.
    Sorry I cannot be of more help but hopefully other Talking Point members will get back to you.

    Best wishes
  3. Angela

    Angela Registered User

    May 28, 2003
    Hi Mark
    In my experience the local branch of your Downs Syndrome Association may also offer you excellant advice.
    Good luck and let us know. x
  4. sarah<3

    sarah<3 Registered User

    Apr 12, 2008
    my aunty has downs and now has been diognosed with alzheimers
    i'm not sure if i'l be able to help at all, but her mum also had alzheimers

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