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Discussion in 'Younger people with dementia and their carers' started by Kazzy, Dec 13, 2004.
Does anyone know of any services for younger people with dementia in the Surrey/Middlesex area?
What sort of services are you looking for?
In Harrow, Middlesex, there's a memory clinic for younger people with dementias - they do assessment and diagnosis, and also provide treatment and on-going support. There's also a day club for younger people run by our Harrow & Hillkingdon branch - I think they also run a carers support group.
I'm afraid I don't know of any specialist services in Surrey, but there may be some that I'm unaware of - maybe others here will know of something.
If you want a bit more information on what's around for younger people, go to www.alzheimers.org.uk/ypwd, and click on 'Services in the UK' - that will give you a bit more information on what's available.
If you want the contact details for either of the services in Harrow, please let me know.
All the best,
Thank you, yes I have found the ypwd section of the web site. I was wondering if anyone knew of any other services that were available that weren't listed.
I think I am looking for some kind of befriender scheme, day service, carer support group, I work for the the society and am have problems finding suitable services for client in 40's in my area.
Thank you for the info re the Day Club, if you could let me know their contact details that would be great then I can contact them and see if it is something we could possibly link into.
The Templeton Centre is managed by our Harrow and Hillingdon branch - you can contact them on 01923 823999. They may be aware of other schemes that are ongoing. Sorry I don't have any more details for you, but please don't hesitate to contact me again if you want to discuss this in more detail.
All the best,
My husband is 59 and was diagnosed with AD and vascular dementia nearly five years ago. He is a strong, healthy and and physically active man (a former teacher) who still has enormous comprehension of intellectual issues but the skills and general abilities of a two year old.
Our 18yr old daughter is recently married and has a new baby daughter. They live in Aldershot, some 300 miles from us in West Cornwall.
Three weeks ago I put my husband into an emi care home for respite for the first time so that I could go to see my daughter and baby. I had a marvellous time as you can imagine but of course poor Pete hated every moment of his week. He is very aware that he is not old!
I am now racking my brains to know how I can engineer another week off. From your database I see our nearest ypwd place is in Bristol. Also how do people manage with costs. I enquired about one nr Southampton, thinking I could take Pete on my way to Aldershot, but it was £700 per week. I had to contribute £100 last time which I feel was fair but have been told that I would have to get a third party to guarantee the shortfall. Do you know if this is correct or can you plead special circumstances to get more?
Any ideas or advice will be gratefully received.
Hi Sue, welcome to the maze that is "respite" for the under 65's. In this area (Essex) we have no day care services for the under 65's...........and certainly no full respite services for same.
I have been using a privately funded retirement home for the past three years for Lionel. It has worked well up to now, but costs £600 per week.
However he now needs help with dressing and undressing, so I do not know whether they will take him next time I request., not incontinent, just wet bathroom floors etc....
It is a minefield, and I do despair as to where I will go from here. I am looking for a permanent home, but one that maybe, for the next 2 years (fingers crossed) I could just access for respite. NOTHING. No one can offer rolling respite, which SS and Carers Support say I need. On top of which we have todays's news from NICE......
Sorry to go on............but I am very distressed today. Love to all, Connie
Had the same problem - no respite services in this area (Dorset) for my husband because he was "too young" - mid fifties, and the facilites just didn't exist. I wrote to the Director of Social Services and my MP - got usual bland letter from MP, and Dir of Social Services wrote a long letter basically saying it wasn't cost effective to provide specialist places for early onset, as there were so few people affected!!!!
Finally (only a few months before he got so bad that he finally had to go into hospital) it was agreed that my husband could have one day (ie 10am to 3pm if hospital car service worked) at a local day centre. About a month before he was admitted it was agreed that the dementia unit he is now on would take him one week in five for respite - but he was admitted before he got the respite, and he is still there.
So I do sympathise, and the news from NICE on top of it all....
I do hope you are feeling a little less distressed today.
My chemo went OK yesterday and I'm feeling not too bad, just a bit tired today (they give you lots of stuff to help stop the worst side effects, and it seems to work for me so far!).
If there is nothing in your area, ask your social worker if social services are able to fund for him to go somewhere outside the area, as there are no suitable places in your area. It is not always possible, but it may be.
Also, have you come across the idea of Direct Payments? That is when social services give you the money to buy your own services. For example, if there is no suitable day centre, you may be able to get social services to give you the money directly to pay for day care in your own home. I don't know much about Direct Payments, but your local Alzheimer's Society, Citizens Advice Bureau or Age Concern may be able to advise you.
My husband is in a similar condition, still aware that he is getting things wrong, but unable to do much for himself. He is 62 and has had AD for 6 years. I have had to learn to harden my heart in order to get respite as my husband also hates the Care Home full of elderly people. Without a break to look forward to I know I would go under. I have just retired myself and need some normality for myself. Your daughter and her baby are important and need you too. If you cannot find respite care for ypwd you must still have your break. I am afraid I am unable to advise you on fees, but would have thought your care manager or CPN should be able to help?
Why is there such a rigid limit?
My wife is 65 next April and we have reached the point where I need some respite. We live in Dorset and there is not a single rest home offering a respite bed for under 65s. Why is there such a rigid limitation on age? What precisely is the justification for this? No-one seems to be able to tell me. Does anyone know?