No one Cares about Learning Disabilities/ early age Dementia

[Jeanette]

Dont know what is going to happen today but might start on a very long message I intend to send to anyone I can think of who should be doing something to help a person with L/D and Dementia!
Believe me The charities who should be helping like the Alzheimers Society ,Mencap and Downs Association,are not and the SS and health conveniently turn their heads away and Trawl for unknown Carers and Carees!! Am starting at the top (or bottom if that is what you think ,lol) with Gordon Brown and working my way down (or up) from there! Only problem I can see is that my message will become a book!!
I said it was my new years resolution to fight them and now going to start!!

[rosemary]

Hi Jeanette,

If you get time create 2 versions.The first one that is more personal to your own circumstances and the 2nd ,more of a general one which lists your concerns,a bit like a template if you like that anyone else could adapt and use.

http://www.wrx.zen.co.uk/britnews.htm this might be useful if you intend contacting the media.Each link has a Contact us section.

Good luck
Rosemary
x x x

[Jeanette]

Thank you for that Rosemary. A very useful piece of information.

[rosemary]

You're welcome Jeanette.

More reading for you http://www.carersuk.org/Getinvolved/Howtocampaign

Also, even though Equal Partners is finished I am sure there are still templates available to help.If you send a pm to Chris or Matt I am sure they will be able to advise you further.

Have you considered asking the Admin/mods on Alzheimers message board if they would consider doing a poll wherein people can vote as to the age of the person they care for who has Alzheimers.You may gather support that way too.Just a thought.We could always have one here too for you if you like.The results may be small in number but you would see you are not alone hopefully.

[Jeanette]

Thank you for such useful info Rosemary .I do appreciate it. Have already had a number of 'chats' to the Alzheimers Society.They do not have any 'contacts' with a person who has early age Dementia and Learning disabilities,though acknowledged they should! There is a lady from there who phones me every nine months or so just to say how are things going! Always gets the same answer. Nothing happening to help us ,but plenty of worry from a City which is millions in the Red and possible withdrawal of a respite service!
We understand that health are working to a criteria for respite which was not put out to consultation before its introduction . (Surely this would make it illegal)this could cause great distress to about half of its carees if put into strict action. (Includes us) How can a regressing disease plus a number of other disabilities including epilepsy not fit a criteria for health?
It would be useful to have a poll as to the age of a person with Alzheimers/Dementia but a normal person who develops it and a person with L/D who develops it are usually many years appart.My daughter developed Dementia at the approx age of 32. Might have been before that infact!
There just isnt any day care available within our city for any family in our situation . We are now nearly ten years down the line since she developed the signs and symptoms and have been waiting for five years since we had to take her away from her day centre. they didnt know how to cope with her changing needs. (she is 41 now) the only thing we have is respite. Another point that really annoys me is that because my husband and I are pensioners and saved very carefully for our old age ..we get no benefits in any way!! Lost the CA at 60 of course.
Thank you once again for your kindness and concern!

[rosemary]

Hi again Jeanette,

This article is from yr 2000 http://tiny.cc/Alzheimers , makes interesting reading but also shows how nothing has changed.

Like with most parents the worry too is not just the here and now, but the future and what it brings for our loved ones.Our local group only meets once a month and are mostly parents caring for their sons/daughters, aged approx 23 yrs to 50 yrs old.The services are not there now and many are failing to meet the tightening criteria too.As some of the parents have ill health too just where is the support going to come from.

You create a draft of some sort Jeanette and I will help send it off to as many places as possible.If we widen your audience you may,just may catch something

Rosemary
x x

[Jeanette]

That is an interesting article Rosemary. It does not mention Learning disabilities but might have included them mentioning the ages of 32.
I just wanted to pass comment on something I have already learnt re WORKING AGE DEMENTIA.
It does NOT include L/D. Even our Director of Health and social care thought it did and was apparently shocked to hear it didnt!
I am not very good at putting things together but am adamant I am going to give this disgraceful situation we are in the very best of attention I can!! Enough is enough!!
might go down to our Carers unit and get help from them ?
Will contact Matt or Chris as you suggested too.
Thank you once again .
Bet Carers UK are delighted to have someone like you here for us!!!!

[charles47]

Hi Jeanette and welcome to the forum. I see you've been "Rosemary'd" so there isn't much for me to say except welcome!!

I've a son with autism and - so far at least - no signs of any other problems, but there seems to be a growing awareness of early onset dementia in people with learning disabilities. Trouble is, most of the awareness is about the fact that they don't know what to do about it. It's too new - and so they ignore it. I've seen some info about it a while ago and the Down's Syndrome Association has something on dementia and Down's but I think it's mainly aimed at the older person with Downs. One thing I've heard is that dementia seems to set in earlier in people with Downs than other people, but I don't know if that's true.

[Jeanette]

Thanks for your interest Charles. There is an approx 47 percent chance of a person with Downs getting Alzheimers/Dementia and mostly at an earlier age. It has been diagnosed at 17yrs apparently but the majority are usually over 45yrs old.My daughter was very unlucky that it came at approx 32yrs old.. There is nothing put in place to help/support and provide day care for someone like her in my huge city. You might be very surprised at the number of people we have spoken/emailed/written or talked to on a hosted chat . They all come out with the same answer.The local authority should supply for her needs.Unfortunately they are not doing that. more can be done to prolong life these days and so a far greater number of people with Downs are expected to get a form of dementia. Nothing out there to help them !!!
the powers that be need to take this on board and do something ASAP
I have set myself the task of attempting to raise awareness!!! However poorly I do it,will just do my best. I hope at the same time we can get the sort of help we need.
The other thing that has to be taken into concideration too is the age of the carer..no spring chicken unfortunately but a quite sickly old hen ,lol.

[Scally]

A few useful publications: from Downs Syndrome Scotland:

http://www.dsscotland.org.uk/publicatio ... mentia.pdf (carers guide)

http://www.dsscotland.org.uk/publicatio ... mentia.pdf

Dementia http://www.dsscotland.org.uk/publicatio ... -students/

Keep Talking about Dementia Define Dementia
Information for older siblings Define Sibling and professionals.
Download PDF [293kB]
It's Your Move - Down's Syndrome and Dementia
Health information for GPs.
Download PDF [61kB]
Food for Thought
Dementia and eating.
Download PDF [47kB]

[charles47]

There's a general lack of support for any younger person with dementia, but once you add in learning disability, nobody knows what to do because it doesn't fit neatly into any box. Social services tend to think along rigid lines: physical and sensory disabilities, learning disabilities, mental ill health and older people's services, with no overlaps. Life isn't like that though, is it?

Ultimately, the law makes the local authority responsible for providing support, but how? Most care services with experience of dementia are for older people and have no experience of learning disability. Learning disability services have no understanding of dementia...and so it goes on.

Can you enlist the support of other carers in your situation to take this forward to your local elected councillors? One person with a problem is isolated and can be ignored. A group is harder to ignore and shows a greater need for action...

[Jeanette]

Thanks Excalibur and Charles. I know most of the info you gave Excalibur but what it does not seem to say is what help we should get ,especially daycare. Home day care would not be suitable here. Being in early age dementia /L/D means unfortunately there are very few, infact havnt come across anyone else with it,but that doesnt mean they are not out there ..just means they havnt been tested for it!! So must be a fair number with it but undiagnosed!
What you say is quite correct Charles infact I actually stopped one of our councillors in town and put him in the picture.He hasnt come back yet though..
Have just had enough of this uncaring city and expect lots of other carers around the country could say the same about their services!! Its just that this particular need is so unusual[ and nothing being done about it!!b]

[rosemary]

Jeanette,

Take a look at this that Sam has posted
http://www.carersuk.org/Forums/viewtopic.php?t=7090

Eve Rank

Eve has worked for Inspired for many years as a co-trainer, consultant and member of our easy read group. She was a member of our advisory group for the DH on the White Paper Valuing People, helped us set up the National Forum of people with learning difficulties, helped employ the Director of the Valuing People Support Team and members. Eve also was the only commissioner on the DRC with a learning difficulty, she was a long standing member of the Learning disability taskforce and finally Chair of the Learning Disability Action Group for the DRC.

I know all about learning disabilities but I would imagine at some point she will have heard of l/d coupled with Dementia.Might be worth you joining this chat and asking a few questions.

Rosemary

[Jeanette]

Thank you for that Rosemary.Will certainly try to be there.
I have been in contact with Chris who is sending me the template you mentioned.
It is just waiting for info to come through now.
It feels very weird to be doing such a thing by myself but am still in the mood to attempt to do something!!! Have already left it too long!!
Thanks once again.

[rosemary]

It feels very weird to be doing such a thing by myself but am still in the mood to attempt to do something.

You are not by yourself Jeanette.Fair enough the bulk of any communications will be done by you but I am sure I speak for all members here in that we will support you every step of the way and help you in any way we can.
Everything starts with that 1st step but hopefully in time you will see some results and also gather support from others in the same situation as yourself.

You could start off in several directions [/i], one to the usual contacts that we all do such as Gordon Brown,your own MP,Ministers etc and also send a letter to likes of CUK/PRTC ,also YOURS magazine has a section for carers.You might get lucky and have it published in the future.Your local newspaper is a good place to start too.

If this problem is as bad as you,Charles and Rob are saying, the sooner you start raising awareness the better.