dementia

[JennyJean]

My husband (only 58) has been diagnised with early onset dementia - my youngest child is only 14 is there anyone out there who has been there?

JennyJean

Bumping for you JennyJean.

This isn't quite the same, but my mum was diagnosed with early-onset Alzheimer's at 57. She lives abroad, 1000s of miles away, and I don't see her very often, so I'm sorry I don't have any experience of caring directly for her. She currently still lives at home with her husband (she's now 65).

I can't imagine what a terrible time this must be for you both and your children. I don't know what the system is like in the UK in terms of providing help to people with early-onset and their families, but I really hope someone knowledgeable will be along on here soon. I do know that the Alzheimer's Society website has loads of useful information and a 'phone helpline.

I hope you're getting all the help and support that you can, my heart really goes out to you .

Are their any 'Admiral Nurses' near you? They are meant to be very good but do not seem to cover all areas here . Very sorry to hear about you dh's illness especially at such a young age.

So sorry to hear you've been given such hard news. What support are you getting from your local services? If I were you I'd get in touch with your local Alzheimer's society, as they will have details of local groups for people with early onset dementia.

Do you know what type of early onset dementia he has? And the prognosis? How much information have you been given?

How is your children dealing with the news?

I may be rather late joining this thread but have the same situation in that my husband has been diagnosed at 56 and have no one in a similar situation to talk to. My children are 18,16 and 13. It isnt Altzheimers and is a rare variant but I am finding it terribly hard and we are only in the early stages. Let me know if you still check this site and how you are now.

Has anyone had any experience of telling their children about dementia and what to expect? My dad is in the later stages where he is hallucinating and thinks he's living another life and my fil has early stages. DD is 11 and very close to fil and is aware something is going on with other grandpa.

I think we need to prepare her as she will get exposed to their behaviour at some stage - but don't know where to start. She is sensitive and will get upset.

Anyone had any experience? Am dreading the conversation as its all so sad.