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No one Cares about Learning Disabilities/ early age Dementia - Page 11 - Carers UK Forum

No one Cares about Learning Disabilities/ early age Dementia

For issues specific to caring for someone with dementia.
110 posts
I will second what Jane has said above.

You know where we are if you need us.

x x
YThanks Jane and Rosemary. Your kindness's are appreciated.
Good to hear from you Jeanette.
Hope you get all sorted and I wish you the very best x
Thanks for the update and take care, Jeanette.

Take care.

Sezzie x x x
Thank you for the update Jeanette. Hoping you find the care you need for your daughter and that your operation goes well. ((((((((((((((((HUGS))))))))))))))))))

More people with Downs Syndrome developing dementia
People with Down's syndrome are at greater risk of developing dementia much earlier than the general population. As they age, their families and carers are now struggling to cope, writes Tim Lawton.
see details and video here
Thanks for that info Rosemary.Have just returned from holiday and found an email about the time and date of that program but obviously I wasnt here to watch it.. I was interviewed by Tim and he appeared very knowledgible.Am rather shocked at what appears to be lack of info re Downs and dementia from the Downs Association. Nothing on the horizon here except they have just 'pushed' me in to accepting a small direct payment for my daughter when all the time I have been saying I want day respite.Am not sure yet if I am allowed to buy a new wheelchair for her with it when I haved saved enough. There is nothing wrong with her chair as such, but have added bits that help transport her more safely and it looks ungainly,and a bit difficult using a power pack on it.. Her old one cant be changed for another year.(apparently it is because we accepted a voucher for it) and have to keep the old one for 5 years.
Hope you are well, and thanks once again for the info.

Just joined and i am in the same situation, since my daughter ( shes 29) was diagnosed I have heard of other people so we fit in somewhere. I keep coming up against a brick wall xx
Hi Twinkle.
Am really sorry to hear about your daughter as I know from personal knowledge what you are all going through. Would you like to tell us more about your daughter, and also your experience of getting a diagnosis/ info/ support? You can see from what has been written that I am utterly disatisfied with my city,and it has been even worse since the cuts.Frankly I dont think any one would believe me as to recent events. I do hope your experience is even slightly more positive than mine.
It has been suggested somewhere we start a chat/message group for carers who care for a person with L/D and dementia, though at this time I cant think of anyone else who it might interest? If I can pass on any form of info etc just ask. My daughter is 44 years old now and if you look further down the dementia posts (it was on the second page last time I looked)you will see The seven stages of dementia.My daughter slots between number 5 and 6.(That is my opinion)Her dementia is called atypical. They cannot pinpoint what type it is other than it is not Alzheimers.
Hope you do get back in touch.


110 posts