Why I’m going to donate my brain to research
Susan Jonas helped to donate her aunt’s brain to medical research in 2013, an experience that inspired her to sign up to donate her own brain after her death. Here she explains the process around donating her aunt’s brain, and why she believes contributing to brain research in this way is so important.
I hadn’t thought much about brain donation until I saw in my aunt’s will that she wanted to donate her body to medical research. I had seen her will because I had enduring power of attorney over her affairs – otherwise I wouldn’t recommend stating such a wish in a will because by the time wills are usually read it would be too late to act.
My aunt was a lovely lady who moved to live near me in her 80s. She went into residential care after her behaviour began to grow a little odd and it became obvious that she couldn’t live on her own.
I knew she wasn’t going to live forever, so began to look into how to make sure her wishes could be met. She was a person who liked helping others in her lifetime and it seemed fitting that she would continue to help people in her death.
My family has a few doctors in it, and we discussed how we could best ensure that her body could be used. It was my daughter who suggested that the whole body of an elderly person isn’t always particularly useful to medical research, and that brain donation might be better as researchers can learn so much from brains, whatever their age.
In the meantime, my aunt had a stroke, so I knew I had to get the brain donation organised. I got in touch with the South West Dementia Brain Bank in Bristol – my closest one – to sign her up and make all the necessary arrangements.
My aunt was registered for the Brains for Dementia Research project but wasn’t able to do the cognitive tests that are usually carried out with potential donors. However, a nurse from the brain bank still came to my house to collect lots of information. I was able to consent on my aunt’s behalf because we had registered our power of attorney with the court of protection, so could make all decisions for her.
When she died, the brain donation itself was a smooth process. I had the phone numbers to ring and the nursing home had already asked about my aunt’s wishes, so were aware of the situation. I had spoken to the funeral director in advance and the brain bank organised for the body to be taken to the hospital mortuary for the brain to be removed before being returned for the funeral.
The brain needs to be removed within 72 hours of death, so I was glad she didn’t die on a Friday or bank holiday weekend as this can sometimes slow down the donation process.
Afterwards I decided that I wanted to donate my brain too. I have a science degree and I’m interested in research, and helping to donate my aunt’s brain gave me an insight into all the different aspects of brain donation, and how important it is for research. To me it’s important to be as helpful as possible to people doing brain research.
Signing myself up was straightforward. I filled in some forms, and have done two cognitive tests – one in person at my home and one over the phone.
After the donation, the people at the bank made a diagnosis and discovered that my aunt had a mixed vascular dementia and Alzheimer’s disease. My mother also had dementia, though her brain was not examined, so I think my brain might be useful as dementia seems to run in my family. My daughter is down as my representative for the donation – I’d be persuading her to sign up too if she was old enough!
I’m now on a bit of a recruitment drive to get friends and family to sign up and donate their brains too. I think that personal recommendations are a really good way of getting over taboos and making brain donation a normal thing to do.
It can be hard to get people to talk about death and wills and things. I’m pleased that I have a card in my wallet saying I’ve signed up to donate my brain – I think these outward and visible signs are important and help to raise awareness.
I find that a lot of people are disappointed that their elderly relatives can’t donate organs when they die at home or in nursing homes. Donating your brain is a way that you can still contribute, and doesn’t mean you have to die in hospital, though you are usually unable to donate other organs if you donate your brain.
I’m only too keen that benefit is gained from people dying. I’m so pleased that I was able to carry out my aunt’s wishes. It’s her legacy of helping people that I want to carry on by donating my own brain.
Find out more about donating your brain on our website.