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Early age dementia in a person with learning disabilities - Carers UK Forum

Early age dementia in a person with learning disabilities

For issues specific to caring for someone with dementia.
My daughter is now forty years old,but at the age of thirty two started behaving a bit oddly. Eventually some five years later a definate diagnosis of dementia was made. She is obviously totally different to the person she was. The lack of practical support and help because of her L/D is disgraceful!! She is not accepted in the working age dementia group because obviously she doesnt/hasnt worked.the vast numbers of Alzheimer/Dementia groups are for the Elderly,and if you say early age dementia then that age seems to begin around the fifties.
I am a pensioner which means I have not got Carers allowance,nor any other benefits to help because we saved for our old age. We get no daycare because nothing is suitable. They have tried to 'force us' to accept direct payments (note no choice) but I do not wish my private home being turned into a type of day centre for one!! I cannot find out what the powers that be intend to do for someone like my daughter, but do know why we as carers save this country billions of pounds per year.They take total advantage of us and know we will continue in our caring roll.!!
Jeanette, you are so right. Dementia in people with Learning Disabilities is a relatively new phenomenon (but fast-growing) as life expectancy used to be so poor, especially in people with Down Syndrome.

The trouble is that the authorities don't know what to do. It's too new for them to have any/many successful models to base their services on so they've gone into ostrich mode and passed the problem to you.

Direct Payments are a choice. I believe the government has made it clear that they should only be offered where there is a viable alternative so that those who do not want Direct Payments don't have to take them. For people with Learning Disabilities, there is a policy document called Valuing People which states quite clearly that services should be built around the person - not the other way around. In any case there is a service which is available but which they are refusing to offer on the grounds of your daughter's disability: a clear breach of the Disability Discrimination Act. The day service for people with dementia who are of working age cannot possibly require that they have been in work. And it should make reasonable adjustments to meet her needs. If it were me, I'd be demanding a place for my daughter in that service. And threaten legal action under the DDA if they refuse.

I'm going through something not too dissimilar with my son's college at the moment.