Brain donation crucial for scientific research, but people with dementia in South Africa have learned the bank is full

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

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

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

Mr Thorpe has organized a lunch with an old friend, so his wife writes that he won’t need lunch at home that day.

It’s a routine Mr. Thorpe – who has lived with dementia for two years – has become accustomed to.

“I can remember things for about two minutes, [but] now, if we come back about seven minutes ago, it’s empty, “he said.

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

“It’s 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, SA Brain Bank stopped receiving brain donations.

SA Brain Bank is based alongside the research laboratories of Flinders University.(ABC News: Sarah Mullins)

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

But the recent freeze on acceptance of new specimens means people with dementia like Mr Thorpe will not be able to add to his collection.

“No capacity”

Long before his diagnosis, Mr. Thorpe and his family noticed that his behavior was changing and his memory was deteriorating.

The father of three is a former teacher and university professor and said he felt frustrated to see his knowledge and memories fade away.

The SA Brain Bank, founded in 1986, studies neurological diseases, including brain cancer, Alzheimer’s disease, motor neuron disease and multiple sclerosis.

Flinders University research dean Peter Eastwood said funding was at the heart of the current stalemate.

Professor Peter Eastwood is a medical researcher at Flinders University in Adelaide.
Professor Eastwood said future funding would be crucial.(ABC News: Sarah Mullins)

He said a lack of funding and resources, as well as a change in research techniques, had prompted the bank to halt all future donations.

“We just don’t have the capacity to take more donated brains right now.

“If we get future funding, that could change.”

“Without this there will never be a cure”

Not all specimens in the bank have been classified yet and this is something Flinders University hopes to complete within 18 months.

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

“[While] there is currently no specific opportunity in South Australia for brain donation, there are many opportunities for people who would like to make this incredible sacrifice and donate in another way, “he said. he declares.

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

Adelaide's wife, Robyn King, who is a staunch supporter of SA Brain Bank.
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 at the age of 56 and died in 2014, at the age of 65.

By this time 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 horrible to watch her husband deteriorate so drastically.

“Something that will haunt me until the day I die is the way he cried,” she said.

“He would be put in a room where you would just hear him moan – they didn’t know what to do with him.

After Mr. King’s death, his family found comfort in the fact that his brain donation would aid in dementia research.

“It was wonderful to think that by doing this we could get answers from the necessary research,” Ms. King said.

But the King family is now devastated that the brain bank cannot function as it once did.

Adelaide couple Alan and Robyn King.
Alan and Robyn King have been married for 44 years.(Provided)

Ms King said it was imperative for Flinders University to receive the funding it needs to continue running the bank.

“Without it, there will never be a cure for these diseases,” she said.

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