About four years ago I heard about Brains for Dementia Research, whereby brains can be donated post-mortem for use in research, and when I mentioned it to Mother she was really very positive about signing up for it so her brain could be useful when she'd no longer got any use for it. (She was a chemistry graduate, and understood research.) We all signed the necessary paperwork, their man Steve who covers Northern England came to visit her once a year to ask lots of questions for their records, she died last September, we confirmed that we still wanted to go ahead and signed just one last form and took it to the undertakers, and he then made the arrangements very smoothly for her brain to be taken and sent to their labs.
I've had a phone call from him today to say that they've examined her brain and can confirm that she had Alzheimers and also Lewy Body Dementia. Her diagnosis had changed over the years from "Unspecified dementia" to "Probable Alzheimers" to "Alzheimers" (she never had an MRI scan or anything like that). She was on Aricept about 12 years, and died aged 97 with very poor short term memory and some anxiety but otherwise enjoying life, in a care home the last year after 4 years of me and my husband caring for her in her home after my father died. Her brain will now be made available to be used for research.
In case any of you haven't heard of Brains for Dementia Research, I'd like to tell you of its existence.
My sister and I are very pleased to know that Mother was able to donate her brain for research, even though she couldn't donate any organs. (Dementia excludes the possibility of organ donation, the thought being that since much of its cause is unknown, it might be something lurking in every cell; there are also age limits, the last of which is 85 for cornea donations!)
BDR also needs "normal" brains: if you sign up he will come and visit you every 3 years after your 65th birthday, to interview you to record the state of the brain while in use (it's every year for people with dementia). We're both signed up: it's good to know of one positive thing we can do to help research into this horrible condition.
So if the person you care for is up to having the discussion (or perhaps if they're not but you have Health and Welfare POA and are next of kin... not sure about all of that), or if you want to donate yourself in the far off future, do get in touch with them. See http://www.brainsfordementiaresearch.org.uk/
And Alz Soc is one of the partners in the scheme, so it's got that stamp of approval.
Best wishes to you all (I don't log on here very often these days - but am still available to update the list of abbreviations!)
Pam
I've had a phone call from him today to say that they've examined her brain and can confirm that she had Alzheimers and also Lewy Body Dementia. Her diagnosis had changed over the years from "Unspecified dementia" to "Probable Alzheimers" to "Alzheimers" (she never had an MRI scan or anything like that). She was on Aricept about 12 years, and died aged 97 with very poor short term memory and some anxiety but otherwise enjoying life, in a care home the last year after 4 years of me and my husband caring for her in her home after my father died. Her brain will now be made available to be used for research.
In case any of you haven't heard of Brains for Dementia Research, I'd like to tell you of its existence.
My sister and I are very pleased to know that Mother was able to donate her brain for research, even though she couldn't donate any organs. (Dementia excludes the possibility of organ donation, the thought being that since much of its cause is unknown, it might be something lurking in every cell; there are also age limits, the last of which is 85 for cornea donations!)
BDR also needs "normal" brains: if you sign up he will come and visit you every 3 years after your 65th birthday, to interview you to record the state of the brain while in use (it's every year for people with dementia). We're both signed up: it's good to know of one positive thing we can do to help research into this horrible condition.
So if the person you care for is up to having the discussion (or perhaps if they're not but you have Health and Welfare POA and are next of kin... not sure about all of that), or if you want to donate yourself in the far off future, do get in touch with them. See http://www.brainsfordementiaresearch.org.uk/
And Alz Soc is one of the partners in the scheme, so it's got that stamp of approval.
Best wishes to you all (I don't log on here very often these days - but am still available to update the list of abbreviations!)
Pam