After the end of the journey: Brains for Dementia Research

Discussion in 'I care for a person with dementia' started by PamD, Sep 18, 2014.

  1. #1 PamD, Sep 18, 2014
    Last edited: Sep 19, 2014

    Thanks to all of you who commented on the post I made on Sunday after Mother had died. I'm just so relieved that this silent heart attack released her before the dementia progressed to a stage where she would have been unhappy, and that she never had any other serious illness to cause her pain and distress. One lady from the home said "It'll be very lonely in the lounge in the evenings, your Mum was the only other person who used to stay up and watch the 10 o'clock news". Not that she'd have understood much or remembered anything, but watching the 10 o'clock news was a long-established routine and the care home didn't mind how late residents stayed up!

    One lovely thing is that she had enthusiastically agreed to sign up to donate her brain for research after her death, through Brains for Dementia Research (, which is a partnership involving the Alz Soc. I just had one extra piece of paper to sign and take to the undertaker's, and thereafter Steve from BDR dealt with everything. If the hospital where she died hadn't been able to do the procedure he'd have arranged to move her to Manchester and back again, all very respectfully and at their expense and with no trouble or delay for us and the funeral arrangements. None of our family want to "view" Mother's body, but apparently the operation leaves no visible damage so even that is not a problem. He'd visited her once a year to gently interview and assess her, to get information to add value to the postmortem brain for research by knowing more about how it was functioning in life.

    They also want "normal" brain donations for comparisons, and if you're over 65 they'd love you to sign up and will come and assess you every 2-3 years.

    I do urge you to think about donating your own brain if you're old enough, and to consider discussing it with the person you care for. Lots of info on the BDR website. It's one practical thing we can do to help those who are researching this dreadful disease.

    We also learned, from the Organ and Tissue Donation Team, that (a) there are age limits for all sorts of donations, though they can use corneas (from eye) up to age 85, but (b) they can't currently accept any organ or tissue donations from people with a diagnosis of dementia, because they don't know what causes dementia so it just might be something which lurks in all the cells. Sad but interesting.

    Best wishes to you all,

  2. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    Thanks for the info
    I am going to seriously think about brain donation but I'm not over 65 yet but it will soon roll round :D
  3. LAP

    LAP Registered User

    Nov 23, 2010
    Tyne & Wear
    Thank you for the information. Hubby and I discussed this as soon as I read it and have just signed up. Any help for the research can only be a good thing.
  4. That's brilliant: well done.

  5. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    We went through this last year for my husband and the same Steve dealt with it. I did go and see my husband after he was back in the care of the funeral home and you would never know he had had the procedure. He looked so serene I am glad I went, however none of my children wanted to and I respect that.

    We eventually had the result of his condition 8 months later and he did indeed have Alzheimer's disease.

    I do hope others sign up in the hope that one day a cure may be found.

    Best wishes to you and your family.
  6. Louisek100

    Louisek100 Registered User

    Sep 27, 2012
    My husband isn't able to make the decision himself, however as he donated blood regularly and was on the Bone marrow register I have completed the form this morning to request his inclusion (I have been considering this for some time).
    If we had discussed this together whilst he was still capable I'm sure he would have agreed.
    My children are in full support of this.
  7. That's great, Louise: I'm sure it'll be a comfort to you at the relevant time in the future.

  8. Louisek100

    Louisek100 Registered User

    Sep 27, 2012
    As my husband had early onset and the children have been asked if they want genetic testing I am sure he would want to help further research if possible.
  9. nicoise

    nicoise Registered User

    Jun 29, 2010
    My mum donated her brain, principally to Parkinson's research, but I understand the tissue bank shares some tissue for other research, which of course is totally appropriate as she also had associated Lewy Body Dementia.

    The process ran very smoothly - when we knew she was dying, we alerted the retrieval team; then after she had died, all it took was one phone call from me to set the retrieval team in motion, they liaised with the care home and funeral directors and I was not involved at all.

    I did see my mum afterwards, and if you had not known what had taken place you would almost be unable to see any sign, so I can vouch for the respectful and sensitive way in which she was treated.

    I also received a report on their findings (quite some months later), which was obviously somewhat scientifically technical, but did confirm both the dementia and Parkinson's, and explained some other events (such as suspected TIAs) and behaviours due to the progress of the disease which didn't fall neatly into her original diagnosis.

    Donation was something my mother believed in all her life, and she signed herself up - I was proud of her for doing it; for me it also brought comfort afterwards to think she lives on in a special way. :)

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