Hi koh samui. My sister is also 49 this year and was diagnosed with dementia about 2 years ago so I know what a huge shock the diagnosis must have been to you and your mum. Even though we had all noticed the signs, and in some ways it actually helped to know why the strange behaviours were happening, it felt like a very cruel blow to us, her family.
she has lived in a supported living set up for many years and already had a Social Worker in place so it was easier in some ways to access help. She was initially prescribed Aricept which was later changed to Ebixa because the Aricept didn't seem to agree with her.
Our main struggle has been with her care provider who wanted to move her to a different care placement where she would be with people who were much more severely disabled and where we felt, without adequate stimulation, her condition would deteriorate rapidly. Thankfully after much argument and the involvement of Social Services they have agreed to make changes to her current placement instead that will allow her to remain there for the time being, or until there is a significant deterioration in her condition.
Like jilljay I found any advice offered by Mencap and the DSA very theoretical - I was told that in Northern Ireland where we live any research is still at an academic stage and there is little practical advice or help specifically aimed at younger people with learning disabilities and dementia. The local branch of the Alzheimers Society were very helpful as was Carers NI - our local equivalent for Carers UK. They gave us the language we needed to articulate her rights to Social Services and ultimately the care provider. And of course this forum too was and is so supportive and helpful - both for answering my questions and also for letting me trawl through finding little bits of information on my own. The fact sheets are great and very helpful but it's only from reading the threads on here that you see the very human stories behind the facts and that's where I've learned most.
Really helpful for me was the
Compassionate Communication document.
The following 2 leaflets from the DSA are very basic but might be useful, particularly for your mum if she is finding the diagnosis difficult to accept - there might be something in them she can relate to.
Down’s Syndrome and Alzheimer’s Disease and
Ageing and its Consequences for People with Down’s Syndrome
Oh and while I remember to say it, you have nothing to be embarrassed about - I also knew next to nothing about dementia until I was personally affected by my sister's diagnosis and had to find out fast. I think everyone is the same.
Take care and please feel free to ask any other questions that occur to you. I'll answer where I can.
Anne xx