Brains for Dementia Research - Mother finally gets a definite diagnosis

Discussion in 'I care for a person with dementia' started by PamD, Feb 17, 2015.

  1. 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
     
  2. Cloverland

    Cloverland Registered User

    Jun 9, 2014
    244
    I've seen this on here before and made enquiries for my dad, I think it's a brilliant idea but dad didn't live in an area where this research was covering so couldn't take part.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,094
    Kent
    Dhiren donated his brain for research and I'm being monitored for research and donation.

    Dhiren's funeral director accompanied him and was so impressed with the way the operation was conducted he has donated his brain too.
     
  4. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Yes we had a positive experience too, my husband had donated his brain and the result was Alzheimer's, We had the same Steve as you and he pulled out all the stops as my husband died on a bank holiday and the funeral home had not dealt with this kind of donation before. They were all wonderful and ensured it was carried out and I was kept informed at every stage.
     
  5. Thanks for sharing positive experiences.

    I put a note about it on the back of the order of service for Mother's funeral: it seemed a good way to encourage other people to sign up, and on a bit of paper they'd be taking home and perhaps keeping! And I'm pretty sure someone I've spoken to since has said they've signed up from that info.

    Pam
     
  6. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    5,078
    North Bucks
    Hello Pam
    Extremely grateful for your post
    I have been involved with family members suffering with AD and dementia for something like 20years
    and for the last six years have been a 'regular 'on TP
    but this is the first time I can recall ever hearing about Brains for Dementia Research
    Bearing in mind the current publicity being given by the press and politicians to Research it is hard to believe that the subject is not more widely publicised particularly as it is established that the only way they can be certain about Alzheimer's is examining the brain tissue of a dead person
    I shall definitely be discussing this with my sons
    Thank you
    jimbo

    Ps I thought the following maybe of further interest



    Your experiences
    People make the decision to donate their brain to medical research for a variety of reasons. The decision is a very personal one and can affect each person differently.


    “I am a huge supporter of research into Alzheimer’s and other dementias after seeing firsthand the effect it has on people and their families. Deciding to be a brain donor can be an emotional decision, but if my brain can contribute even a small amount to improving our understanding of dementia then it will have been hugely worthwhile. Brain tissue is vital for progress to be made in understanding the devastating diseases that cause dementia and I am happy to be doing my bit to help.”


    Chester Guttridge, 87, from Bristol, has signed up to be a brain donor along with his wife Leila, who has Alzheimer’s.
    “Losing a loved one to dementia is likened to a long journey where gradually the person we know becomes somebody we still recognise but feel we no longer know. Experiencing the sadness of dementia and needing to do something about it made it an easy decision to donate Dad’s brain to Brains for Dementia Research. In retrospect it has been comforting to know that some small part of Dad has been able to assist in the important research for dementia which we hope will be of benefit to others.”


    Andrew Kemp, son of Brian Kemp whose brain was donated to BDR in 2010.
    “Not many people realise that brains from people without memory impairment are needed just as much to act as a comparison. For me brain donation is a way of trying to ensure that dementia is conquered so that future families no longer have to deal with its devastating consequences.”

    Angela Clayton-Turner from Bromley is signed up to donate her brain to BDR. She lost her husband Ted to Alzheimer’s disease.
    If you have signed up to the BDR project and would like to share your experiences with others, please contact

    http://brainsfordementiaresearch.co.uk/brain-donation/

    Get involved with brain donation: Register as a brain donor with Brains for Dementia Research

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1103
     

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