Downs Syndrome & dementia

[elainegee]

Hello
My daughter Amanda is in her 40's and has Down's syndrome. She has led an active and independent life, working in a hairdressers travelling on public transport and acting on stage in a popular theatre group. Following several seizures,changes and deterioration in her many skills, she has recently been diagnosed with early Dementia. Amanda at this time now needs many aspects of full time care. Are there any other people in similar, heart breaking circumstances,who would share their experiences.
sincerely, Elaine Gee

 

[Helen33]

Hello Elaine,

Welcome to Talking Point

I thought you might find some benefit from reading through the thread of another of our members:

http://forum.alzheimers.org.uk/showthread.php?t=7575

I do hope that you find Talking Point to be informative, supportive and friendly.

Love and best wishes

 

[Lost Perci]

Down Syndrome

Hi Elaine


You've raised an excellent point.

I've worked a lot with children and young people with Down Syndrome but I must admit, I didn't really get to consider the consequences when you get older. Of course, people born with Down Syndrome are going to experience all the health issues that the rest of population does too.

The Down Syndrome Association is very good on support too if you want to contact them:
http://www.downs-syndrome.org.uk/

Perci

 

[jilljay]

Hi Elaine

I put up the thread suggested by Helen.Think I started it about 2004 and the concern at lack of facilities in my city is on going.All authorities seem so different,and of course a person with D.S and dementia can be totally different to another!!Their needs can be totally different and the level they are at contributes to what and how much support /help is needed too. I go to as many meetings as I can and raise the issue so am well known by our SS/Health services. I have always had the support (via net) from Carers UK ..Princess Royal Trust for Carers and the Alzheimers society advertised my petition in their local newsletter. I do think the alzheimers Society should take this specialist issue on board ,but as you have already seen ..we are directed to The Downs Society. I think we need BOTH specialised services.The Gov has given a lot of money to 'Dementia' but I cant find out how L/D is benefitting from it no matter how many times I ask the question.I hope you get a better service than I do.Everyone I speak to acknowledges the lack of facilities and say better things are coming but am now in the seventh year and havnt seen any improvement but quite the opposite. Will make myself a nuisance until something positive does happen.There is a possibility we may have found a suitable day centre but at the very early stages yet. I found it really heart breaking when my daughter started behaving differently and the staff at her day centre (then) didnt listen to our concerns .they knew better .she was getting 'stroppy' because she was getting older!!! Now ..through a lot of 'consultations' I believe all staff have dementia awareness training!!
would be more than interested in your comments and how you are being helped/supported or not. I can only say what is happening (or not) in my city. I have my fingers crossed for others in a different place and hope your services are better than mine!

Jill

 

[Helen33]

It's good to see you Jilljay

My sister who has Downs Syndrome but not dementia has used a day facility for many years. I have just been told it is closing in 3 weeks time My sister's issues have always been about loss and sudden loss and now she will be losing not only a familiar setting but all her friends and staff. No one can tell me what is going to happen so I am having to call another meeting on Wednesday to try to find out how everyone is planning to manage Linda's needs.

Love

 

[jilljay]

Hi Helen thanks for the message. We have been told because people with Downs Dyndrome are living much longer ..their genetic makeup suggests they are at a much greater risk of dementia than the general population. I actually read that there was a suggestion of 87% will possibly develop a dementia.Usually the figure is put as 50%.We are going to start seeing a much larger number being diagnosed and need to be prepared for it.The other concern thrown up is at what age are they tested for it? Actually it needs to be started around the age of 30! My daughter wasnt actually diagnosed until she was 38 but we where pretty sure of it at 32!How many are overlooked? or their carers are told they are just stroppy because they are 'growing up'.It is very worrying and something must be put in place nationally to give us the help and support we need.
would love to hear from someone who has had positive care from the authorities on this subject.Am talking about a person being cared for at home and not in 'care'.
I wonder at the same time how many carers of D.S know about the possibility of dementia at all...We didnt!!!

Jill.

 

[elainegee]

Dementia and Learning disabilities Down's syndrome

Dear all
In November last year I shared the heartbreaking news about my daughter Amanda and her diagnosis of early onset Dementia. Since this time Amanda has declined rapidly -losing her speech, understanding and independence. She has also totally lost her mobility. Following several assessments,serious consideration and discussion, Amanda, has recently moved to a local Nursing Home which was established to care for older people with Alzheimers/Dementia. The staff are very caring and supportive at the home, but I do feel the 55 place residential home is not the best arrangement for a person in their forties.
Is anyone familiar with, or aware of any suitable accommodation appropriate to meet the needs of younger people with Dementia and learning disabilities. Please let me know.
Grateful thanks,
Elaine (Gee)

 

[Katrine]

Resources from DSA and BILD

Dear Elaine, I am so sorry that this sudden change has affected Amanda and that you are all faced with extra challenges. I can't answer your question about suitable facilities, but just as an update on the issue of D.S. and dementia services and support getting more joined up, there are some published resources that you and others might like to explore. PLEASE NOTE I am not in any way associated with the DSA or BILD nor have I read or used any of these resources and am not advocating their purchase - it's just information for anyone who might wish to pursue it.

The DSA publishes Down's syndrome and Dementia - Workbook for Staff by Karen Dodd, Diana Kerr and Scott Fern. Price £18.95.

This workbook is primarily for support staff working with people with Down's syndrome who have dementia. It is designed for use with a specific named person, to enable staff to offer them the most effective care possible as the person's condition progresses and their needs change.

The Down's Syndrome Association also publishes Down's Syndrome and Alzheimer's Disease by Tony Holland as a free online booklet. In that I read:

For further information on the behaviour of someone with Down’s syndrome and dementia, and for detailed information on how to support and care for that person, we recommend the Down’s Syndrome and Dementia Resource Pack published by the British Institute of Learning Disabilities and written by Karen Dodd, Vicky Turk and Michelle Christmas.Price £20.00.
ISBN number 1-90408-237-8; call BILD on 01562 723010 for more details.

The DSA also sells a DVD Down's syndrome and Dementia: Fighting for Andrew Price £15.00.

Powerfully illustrates both a sister's dedication to her brother and a gold standard of care for someone with Down's syndrome and dementia.

Hope some of this is of help to you or to others. Katrine x