health care england

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

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