Why I am giving my brain to dementia research

At 88 years old, Margaret Edy has faced many tough decisions over the years. One of the easiest though was agreeing to donate her brain to medical science as part of a landmark dementia research project.

“I’ve always given other people my love,” says the former nursery school worker. “I’m doing this out of love too, and because I want help others.”

Margaret is one of 2,000 people across the country who have signed up to the Brains for Dementia Research project, which was set up to address the issue that in order for any real breakthrough in treatment to be made scientists needed a reliable resource of human tissue.

While the study is comparatively new, Margaret’s understanding of the need for medical research can be traced back to her experiences in childhood. When she was five years old she contracted three potentially fatal illnesses in the space of a year and became very aware of the often thin line between death and survival.

“One after another I was diagnosed with diphtheria, scarlet fever and pneumonia,” she says. “Children were dying, but I made it through. Now children don’t usually die of these illnesses, because we have vaccinations and new ways of treating things. That’s thanks to research.”

While that trio of illnesses left a lasting impression on Margaret, having watched her husband suffer from dementia she also has an added reason for signing up to the brain bank. The couple met when Sue was volunteering at Sue Ryder care home. Peter was building an extension to the property, which was home to Second World War veterans, and after a whirlwind courtship lasting just six weeks, the couple walked down the aisle.

It was a happy and loving relationship but in the late 1990s, but just as the Edys should have been enjoying the freedom which came with retirement, Margaret noticed that her husband was behaving oddly.

“He once drove round a roundabout three times asking the way to Doncaster,” she says. “Then there was the time when I found him filling the four new water butts he had bought with a hosepipe. They were filling themselves already with rainwater and they ended up flooding over.

“I knew something was wrong, but I also knew that I would struggle to get Peter to see the GP. In the end I pretended to have a sore throat and said I had booked an appointment for me. When we got there the doctor spoke to Peter. He pretended that it was Peter’s birthday. It wasn’t, but Peter didn’t correct him.”

Margaret’s husband was referred to a specialist and following a scan, the couple were told Peter was suffering from vascular dementia. While not entirely a surprise, the diagnosis left a world of unknown ahead and Margaret grew determined to learn as much as she could about the condition which was about to cast a shadow over family life.

“I was given a lot of literature about dementia to read,” she says. “Peter had to cope with it the best he could as there was no medication available to him at that time. Initially he was ok. I brought home simple jigsaws and a painting set to keep him busy and keep him happy. However, once he started to deteriorate things went down hill quickly.

“He would forget who I was and would get agitated on train journeys. Some of his friends who also had dementia joined us at our home one year for Christmas dinner, but it was hard. Peter had always loved to laugh, but as the dementia took hold he would laugh even when he was in pain.”

Watching her husband’s decline and knowing she was powerless to do anything to stop the dementia was difficult for Margaret and it’s why since Peter’s death she has thrown herself into spreading the research message.

As well leafleting for Join Dementia Research in her local GP surgeries, libraries and leisure centres, she has also recently agreed to become a patient research ambassador - someone who acts as a bridge between scientists and the public.

Helen Oldknow is a senior research nurse at the Rotherham Doncaster and South Humber NHS Foundation Trust, which is one of a number of organisations across the country involved in the Brains for Dementia Research study.

She said: “Having the support of someone like Margaret Edy, who is so busy in promoting research, is like employing 10 people. She is a great role model and an inspiration to us all because we know that when we tell people about the work we do, more often than not they want to be involved.

“There are a number of projects now taking place under the umbrella of Brains for Dementia research. It’s the kind of work that just wouldn’t be possible without human tissue and it could prove vital to our understanding of a condition which touches so many lives.”

There are 850,000 people living with dementia in the UK today, and the figure is set to double in the next 30 years. With treatment limited and no known cure, the brain banks, which are jointly funded by Alzheimer’s Society and Alzheimer’s Research UK, could provide a vital piece of the jigsaw.

The memory, thinking and behaviour of each prospective donor are monitored throughout their later life through regular assessments, which provides researchers with a complete medical history to accompany the donated brain tissue, allowing them to see how brain changes correlate with symptoms.

A spokesman said: “So far we have supported more 3,200 people to sign up to the project and nearly 600 brains have been collected from those who have passed away. There has been a fantastic response from the research community too, who can see the unique benefit of using brain tissue from us.

“Researchers can search for brain tissue using our online database and apply for samples to support their research. Each application is reviewed by leading scientists in the field as well as people with a direct personal connection to dementia to ensure the tissue is only used for research of the highest calibre.”

Almost 250 research projects have now requested tissue samples and it is hoped that each of those will shed new light on a condition which is now the leading cause of death in the UK.

“I’ve always helped people and now I have the chance to help people again,” says Margaret. “You can have all the money in the world, but if you don’t have your health, what good is that? By doing this I can still help people even after I have gone.”

To find out more about dementia research projects in your area go to the Join Dementia Research page at joindementiaresearch.nihr.ac.uk. Those interested in helping Rotherham Doncaster and South Humber NHS Foundation Trust promote their research work can call 01302 798456 or email [email protected]