• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March 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.

Alzheimer's & Downs Syndrome

mark

Registered User
Apr 28, 2003
1
Sheffield
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.
 

LesleyAnne

Registered User
Apr 1, 2003
4
London
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
www.mentalhealth.org.uk or
www.learningdisabilities.org.uk

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 http://www.dsscotland.org.uk/) 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
 

Angela

Registered User
May 28, 2003
151
Wales
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
 

sarah<3

Registered User
Apr 12, 2008
24
Essex
Hi
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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