• 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.

Has anyone else donated a brain to 'Brains for Dementia' ???

loza

Registered User
Jul 4, 2013
22
Mum and dad had agreed to donate thire brain for research.Has anyone else donated the brain of a loved one for 'Brains for Dementia' to kings college for research into this disease and how did they make sense of the report pls??
 

jimbo 111

Registered User
Jan 23, 2009
5,080
North Bucks
Mum and dad had agreed to donate thire brain for research.Has anyone else donated the brain of a loved one for 'Brains for Dementia' to kings college for research into this disease and how did they make sense of the report pls??
Hello loza
Memory is not one of my virtues
There was a post a few days ago about this subject
I have tried without success to find it ( although I have a vague feeling I responded to it )
I hope someone with a better memory than me will respond to your post
( Alzheimer's Society have it on their website http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1103
it must surely be of interest to members of TP
jimbo
 

nicoise

Registered User
Jun 29, 2010
1,806
My mum donated her brain for Parkinson's research; the report was quite short and very much in medical language, but did confirm the diagnosis of Parkinson's and Lewy Body Dementia, but also mentioned Alzheimer's, which hadn't been diagnosed previously.

I phoned the Brain Bank for a slightly more "layman's" explanation which helped, and Googled some of it too.

But the key thing for me was the confirmation of the diagnosis, along with confirmation of suspected TIAs which showed up as tissue damage but couldn't be confirmed whilst alive, but which we suspected had occurred due to sudden marked declines over time.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Hello loza

My husband's brain was taken for dementia research and the funeral director accompanied the body. He was so impressed with the way the procedure was conducted he has donated his own brain too.

I got a report saying my husband had Alzheimer's disease and associated diseases which I imagine referred to his diabetes and aspiration pneumonia.

My son and I saw my husband's body after his brain had been removed and no one would have known. He looked lovely.

I have donated my brain because I have nothing to fear.
 

Yanni

Registered User
Jul 2, 2013
53
Emsworth, Hants
I have tried to register for brain donation on behalf of myself and OH, who has Alzheimers. I live in the south east of England but come under London for the purposes of brain donation for research. When I attempted to register I was told, very gently, that they didn't have the funds to cover the preliminary work with potential donors and, that their list was closed and that our offer was refused. This was on the day that David Cameron announced £3million (I think this was the amount) for further research into Alzheimers. It's a world where Alice in Wonderland is crossed with Catch 22.
 

Sammyjo1

Registered User
Jul 8, 2014
194
My OH has started on a drug trial and the consultant asked him if he would be interested in Brains for Dementia Research. He said he would and we've received information in the post today which makes me think that they are still looking for participants.

They have a website http://www.brainsfordementiaresearch.org.uk/
 

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