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Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Younger
Early Onset
Dementia

Hiya, as you know last week I wrote of the way my illness was possibly progressing and the effects it was having on my “Angel” Elaine and my family. When Monday finally came around (Some weekends are longer than others aren’t they? LOL) I decided to e mail my CPN (Community Phychriactic Nurse) and start to look at the future regarding homes and places for people my age or thereabouts. As you know the last thing I want to be is a burden for my family. My CPN is an absolutely wonderful friend of my family and has helped us enormously and the return e mail didn’t take long at all.

You have probably guessed what the answer is by now, but for those of you that don’t know, the answer was NONE! Not only was there no such thing as a Younger onset of Dementia Home in Torbay but there were none in my County of Devon or the neighbouring one of Cornwall!! The further I investigated to my shock and horror I only know of one definitely (the Clive project) in Oxfordshire and possibly one in Keynsham near Bristol!!

At this point could I ask a question? Are there any written and recorded amounts of people who are suffering from early onset dementia, say Pre-65yrs old? I ask this because of my well now publicised conversation with BUPA and there “Dementia Care Booklet” Thankfully there are records and figures of those who are over 65yrs old and have this horrid disease in some form or other (and yet still probably thousands yet un-diagnosed)

But what about the younger early onset? On The Alzheimer’s Talking Point Forum I hear almost on a weekly basis of people who have been diagnosed with early onset who are not only under 65yrs of age but some as young as in their forties and fifties as like me.
What’s to become of us??? Are we not just as ill as the others with this unforgiving disease? Do we not have the same fear`s, worries and nightmares of what the future may hold? Do we not wake in the middle of the night screaming a loved one’s name and panicking because we are not sure where we are???


YES WE DO!!!

I find it absolutely astounding that there is no provision for this in the “Modern” world we live in!! How long do we have to feel as if we are “The forgotten ones? It’s bad enough that Dementia itself has a STIGMA to it in this year 2010 let alone being younger with the same disease!! Why do people treat others with Dementia no matter how old they are with such contempt and disgust!

I not only want to be the VOICE of Dementia for as long as I am able but I want to see it

RIGHT UP THERE, SPOKEN OPENLY ABOUT JUST AS CANCER AND HIV IS!!

I honest believe that as soon as we do this, the fear of dementia and the mystery of it all will vanish and be forgotten. Soon after that the funds and support will follow just as it has for the illnesses I have mentioned. Then and only then do I believe that progress will be made not only with Dementia in general, but also early onset sufferers as well. Until then it is up to us to try and remember that this horrid illness has no age barrier or age limit and could strike almost anyone, anytime.
As always I promise you I will do what I can whilst I can and for as long as I can. I want to see a change in the laws of the acceptance age lowering ,not only in care home`s, but nursing homes, private NHS or funded along with Council run homes as well.

What do you think??

As always my very best wishes, Norrms and family xxxxxxxxxxxx
 

Jo1958

Registered User
Mar 31, 2010
3,724
Yorkshire
Norrms and Elaine, hi
What I think is that you have got it right, and I'm sorry to say that at the moment only you and have got it right. In our area all dementia services are supported by the geriatic budget, so there is no hope of any funding or services for younger people with this awful disease.
We have been told that there are no day-care services and no facilities for the younger people with dementia, we have to find and fund anything we want from an odd hour to respite. I am at the beginning of asking and looking for help and support and now that hubby can't be left on his own I am on my own, well at the moment anyway.
He needs more than I can give and I need some time off, so we are on the lookout for whatever.
Norrms, you are doing a wonderful job of work for us all and you have to know it is so much appreciated, thank you.
Best wishes, Jo
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
Norrms
I agree with you.

I admire you in your fight to raise awareness. which will make it easier for everyone.

lots of people assume this is an older persons ilness, and its not.
 

Amber 5

Registered User
Jan 20, 2009
890
60
Berkshire
Hi Norrms and Elaine,
I wonder what the future will bring for younger onset sufferers? In the care home that my mum is in, the newest resident is a 56 yr old male. I don't know much about his particular circumstances, but it was his mum who was his main carer before he came to live there.

I do feel for him as I know how my own mum reacts to being in a setting with other elderly people - she doesn't see herself as being elderly (and she's 80!) What must this poor chap feel like? Don't get me wrong, it is a good home with lovely carers and lots of activities - but I expect it would make such a difference to his life if he was in an environment with more people of a similar age to his own.

Sad as it is, maybe the more younger people who enter these homes will help to bring about a change. As things stand though, how many carers would want to send their 'early onset' loved ones to a home for the elderly?

Well done for all you do Norrms. And thank you.
Regards,
Gill x
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
Hi Norrms and Elaine,

When Peter's Consultant said Peter must be placed in E.M.I. Unit at the local Hospital.

No way was I allowing him to go there.

I had the local Authorities Care Home booket and phoned everyone in the book then no we do not accept under 65's.

Through word of mouth I was told about a Care home with E.M.I. Unit there and it was 5 minutes from my home.

I took Peter to see it and he chose which room he wanted. They were brilliant and I could go in have lunch and if I wanted to stay overnight, due to my health problems and there would have been no charge to me.

Peter was the youngest in the Unit and several weeks later there were quite a few under 65's there.

Peter had excellent 24/7 Care.

As A.D./Dementia is on the increase, they should be building for the under 65's.

God Bless
Christine
 

audi2

Registered User
Oct 9, 2010
11
We haven't started looking into external care for mum yet. Dad seems to be managing and doesn't want to deal with the future/is in denial.

I am a bit of fiesty character like yourself Norrms and if, when we do look into it, we can't find appropriate care for mum I am sure I will be as outraged as you.

Good luck with your campaigning. It is a disgrace that people with this terrifying illness at a young age can't get access to appropriate care.

Best wishes
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Hiya

I agree and we must keep this awareness bus rolling.The ironic thing is, it was a 51 yr old woman named Auguste Deter who was first diagnosed with Alzheimers on November 25 1901 !! you would think after all this time the POWERS THAT BE would have recognised this by now!!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

Helen33

Registered User
Jul 20, 2008
14,697
You are an inspiration Norrms.

I want to shout and scream NOT ONLY ALZHEIMERS. Fontotemperal lobe dementias are known to mostly affect people who are young and still there is no provision. This is a very short clip, please listen http://www.youtube.com/watch?v=ufBxFb0Q2tU

Love
 
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MrsP

Registered User
Mar 19, 2005
115
When Dad needed residential care there were no local facilities but one care home agreed to apply for separate registration to enable him to stay there. Not sure how much of a hassle this was for them but it did allow him to 'choose' somewhere he was 'happy' (I use the term loosely) to be in. I absolutely agree there needs to be more provision for many conditions affecting under 65's.

Kate x.
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Hiya

Thank you Kate, a leeter has been sent to Andrew Lansley the health minister, i am awaiting a reply, best wishes, Norrms and family xxxxxxxxx
 

lucky

Registered User
Apr 29, 2010
129
cheshire
early onset

Hi norms i couldn't belive what ihave just read aboutlack of or should we say no provisions for early onset suffers. My mum was recently diagnosed with early onset in jan and just turned 60.
I do think there is still a issue in relation to dementia my dad does still not talk about it and doesn't want people to know about my mum liek he's embarrassed. And he says he does'nt wa t people to know their buisness.

I'm with you all the way and glad you has so much fight in you tit's great.

Take care Lucky
 

sad nell

Registered User
Mar 21, 2008
3,190
bradford west yorkshire
Norrms so glad you are fighting the corner for all early onset sufferers, I looked at so many places for respite for my Trev and i could not have let him stay in any of the offered places, By word of mouth , I eventually found a council run home that is not even Nursing care but residential, but the wonderful manager said they would give it a try to see if they could deal with a very active person who paced 20 hours a day and they did , now it is very different and Trev is imobile, but they still are sticking in there, the total lack of provision for the under65's beggars belief, but with your input I hope things w ill change, if I can help in any way with fighting the cause I will, Initially I thought my Trev was rare to have this cruel desease so young, but that is just not the case. and something must be done to help all these families that are being touched by early onset, thanks again Norrms for being our Champion
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Hiya

You are all very welcome, as i mentioned in another post i recieved a letter from the Houses of parliament saying my e mail had been sent on to the health secretary and he will repond in time, best wishes, Norrms and family xxxxxxxxx
 

donkey

Registered User
Aug 16, 2009
1,225
sutton coldfield
well done norrms for campaining for the rights of all young onset patients. ive been told many a time that there is no provision for dave so where does that leave us all. keep up the good work and if anyone knows of anywhere in birmingham that will take young onset patients i would love too no xxx
 

Norrms

Registered User
Feb 19, 2009
5,375
Torquay Devon
Hiya

Thanks lyn, any information about anywhere would be a good start for keeping records and using it for information for the future, best wishes, Norrms and family xxxxxxxxxxxx