• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Good and bad - or vice versa

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi, today went to Al.Soc meeting. We have had a post created in Essex for a developement officer for Early Onset Dementia. Very nice lady (I have met her once or twice over the past 5 months) But, basically her report to date is that there is nothing out there for younger people.
No day centres, no respite, no long term care..............I could have saved them a years salary and delivered the report myself.
Her answer was, carers should get together, make a FUSS, form a charity and GO IT ALONE.

Don't know about you, but I am exhausted just looking after Lionel, and I know some of you have families as well. I was so down, and then..........., one of those wonderful rare interludes, the old Lionel shone through.

We sat at dinner, we had music on (Sometimes this does not work) and we were singing together. The song "You are my hearts delight" was playing when suddenly he said......we've been there......I racked my brains......he chuckled......it is the Name of a garden centre near by.

Today I have gone from the sublime to the ridiculous.....as Norm says....day by day. Connie
 
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Brucie

Registered User
Jan 31, 2004
12,413
near London
Her answer was, carers should get together, make a FUSS, form a charity and GO IT ALONE

... I thought we had a charity called Alzheimer's Society?

I'd assume it would be most sensible to campaign for these things as part of a wider dementia campaign. The challenge is for AS to not lose this in the overall mass of things it needs to handle.