John wants to donate his brain to science — but the bank is currently full

Every day, John Thorpe finds handwritten notes from his wife left around the house. 

Key points:

  • The SA Brain Bank, at Flinders University, is at capacity
  • It currently contains 380 brains and 20 spinal cords
  • Those wanting to donate to help scientific research are being knocked back

The lists help remind the 68-year-old of what he needs to do in the hours ahead.

The couple's dog, Jenga, has a vet appointment this week and is also booked in for a grooming session.

Mr Thorpe has a lunch organised with an old friend, so his wife writes that he will not need to eat lunch at home that day.

It is a routine that Mr Thorpe — who has been living with dementia for two years — has become accustomed to.

"I can remember things for about two minutes, [but] now if we go back about seven minutes ago, it's blank," he said.

Following his diagnosis, Mr Thorpe and his family made the decision to donate his brain to dementia research when he dies.

"As far as donating, I fundamentally believe we have to help other people out as much as possible," he said.

"This is one thing I could do to help other people and it's a serious thing."

But in South Australia at the moment, that is no longer an option.

After 35 years, the SA Brain Bank has stopped taking brain donations.

The SA Brain Bank is based alongside Flinders University research labs.(ABC News: Sarah Mullins)

The bank, at Flinders University, currently holds more than 380 brains and 20 spinal cords.

But the recent freeze on accepting new specimens means dementia sufferers like Mr Thorpe will not be able to add to its collection.

'Not got the capacity'

Long before his diagnosis, Mr Thorpe and his family noticed his behaviour changing and his memory deteriorating.

The father of three is a former teacher and university lecturer and said he felt frustrated to witness his knowledge and memories disappear.

"Ninety per cent of that stuff is just gone — I feel really weakened by that," he said.

The SA Brain Bank, which was founded in 1986, researches neurological diseases including brain cancer, Alzheimer's disease, motor neuron disease and multiple sclerosis.

Flinders University dean of research Peter Eastwood said funding was at the core of the current impasse.

Professor Eastwood said future funding would be crucial.(ABC News: Sarah Mullins)

He said a lack of funding and resourcing, along with a change in research techniques, had prompted the bank to put a hold on all future donations.

"The neuropathologist, who is the key person at identifying the underlying pathology of the tissue, is a volunteer and they provide their time on a voluntary basis," he said.

"We just have not got the capacity to take more donated brains at the moment.

"If we get future funding, that may change."

'Without that, there will never be a cure'

Not all of the bank's specimens have been classified yet and that is something Flinders University hopes to complete within 18 months.

According to Professor Eastwood, people can still donate their whole bodies for research, teaching and training purposes, as well as organs for transplantation.

"[While] there is no specific opportunity in South Australia right now for brain donations, there are lots of opportunities for people who would like to make that incredible sacrifice and donate in other ways," he said.

One of the brains currently on ice at the bank belonged to Robyn King's husband, Alan.

Robyn King, whose husband Alan died in 2014, is a strong supporter of brain donation.(ABC News: Brant Cumming)

Mr King was diagnosed with frontotemporal dementia when he was 56 years old and died in 2014, aged 65.

By then, he had lost the ability to speak and communicate and was living in a nursing home.

Robyn — his wife of 44 years — said it was horrific to watch her husband deteriorate so drastically.

"Something that will haunt me to the day I die was the way he wailed," she said.

"He would be put in a room where you would just hear him wailing — they didn't know what to do with him.

"He just cried nonstop and if you tried to find out what was wrong, he couldn't communicate."

Following Mr King's death, his family found comfort in the fact that his brain donation would assist with dementia research.

"It was wonderful to think that by doing that, we might get some answers from the research that is needed," Ms King said.

But the King family is now devastated that the brain bank can no longer operate like it did in the past.

Alan and Robyn King were married for 44 years.(Supplied)

Ms King said it is imperative that Flinders University receives the funding it needs to continue to run the bank.

"Without that, there will never be a cure to these diseases," she said.

"That is what I want to see long-term — that they do find a cure to what Alan had."


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