How old when diagnosis given - Dementia/Alzheimers

[rosemary]

I hope you dont mind me asking this question. It is purely for my own personal curiousity.

I have set it so you can have 3 votes, as I know some of our members have cared for more than one person with this illness.

[malc]

my dad was 71 when diagnosed which helped me tell that the wife had got the beginnings of it at 40,i don't mind you being curious,i wish more people were.

[Pete the Paint]

Jill was 68 when she had TIA's which left her with vascular dementia.

[rosemary]

Thanks everyone

x x x

[malc]

i've just noticed somebody checked the 30's box,i thought the wife at 40 was a cruel trick by mother nature but in their 30's is just wrong.

[Jeanette]

Hi Malc I was the one who posted about a 'thirty' year old diagnosed with dementia.The person is my daughter who also has Down's Syndrome so she is actually one of quite a number of young people with it. The powers that be only seem to 'listen' but not act! I have been highly concerned for years that little is done for those with this horrible disease who also have learning disabilities. My daughter started behaving oddly at the age of 32 yrs old but her day centre manager said oh she is just getting stroppy because she is getting older. She offered us no support or help at all and we really did need it!!!. The little time our daughter remained at her day centre was a nightmare.We took her away from that place and never regetted it. we never believed what was said and six years later we had the diagnosis. It does take quite a while but there are a number of other 'avenues' that had to be looked at, none of which where her being stroppy!!!! . She is now 44 years old,We still have no suitable day based service for her. She does have respite which we badly need but even this has been reduced. It used to be needs led but not anymore. They have changed the criteria too (without letting us know on at least two occasions) and we found out by accident,so now we worry ourselves incase they eventually refuse to take her as the criteria is so narrow now that we have been told if she wasnt 'historic' then she would not be allowed there.!!Lots more has happened of course.. but when I get the opportunity to explain and complain... I do!!!

Jeanette.

[malc]

god bless her,so you had most of the problems getting a diagnosis as we did,people don't want to believe it can happen at a young age,i've gave up with our gp's because they are in denial that my wife has it so i just talk to consultants now,give her a hug from me and i totally understand how you feel watching the decline of a loved one and fighting for a diagnosis.

[Jeanette]

That was a thoughtful and kind post Malc,and I do thank you for it. I do believe you 100 percent about your wife and experience and please give her a hug from me too.
I do tend to think only of L/D and any form of dementia but do realise those outside of L/D can be in an appalling situation too. In my city they have built a few 'Villages' which caters for elderly with a form of dementia and other associate problems, but I havnt heard of anything on my side of the city that will help me with my daughter.The P.T B just keep going on about direct payment! All I am asking for is a suitable day base and strong reasurance that her respite will not continue to be altered unless of course they return to a needs led service. Does your wife use day care or have respite to give you a break? Am really interested as I feel a lot of people are overlooked in the planning of extremely necessary dementia services.

Jeanette

[malc]

jeanette,my kids and 1 look after her,she's scared so outside help not an option but we do go to a memory cafe on friday afternoon and bowling now and again,waiting to hear about direct payments under exeptional circumstances rule so i can afford to care for her after my kids are off tax credits claim because surviving on those and me working the odd night in the taxi when i can at the moment,i feel the wife is legally too young to have az because the system isn't geared up for the situation and i'm sure you agree with that.

[Jeanette]

Early age dementia seems to be sadly over looked Malc, but I do think you are entitled to a financial benefit. I have complained to all who seem to have anything to do with Dementia,but obviously only about L/D and dementia. Will now add that little seems to be done for those with E.A.D and not L/D too.
I do hope you get the Direct payment or any other benefit that others might know of that will help you and your wife.
I got it easily, but had said from the start I didnt want it, but did want Daycare with a base and continuity of her respite. They still cant supply suitable daycare after nearly eight years of waiting. Please keep us posted (if you wish of course) I do hope we start to hear you are receiving the support and help you need.

Jeanette..