mongit: What it means to donate your brain

Tiffany O'Callaghan, CultureLab editor

(Image: Ania Dabrowska, Mind Over Matter)

At 92 years old, Albert Webb is wandering through an exhibition in London's trendy Shoreditch. In the underground warren of rooms, echoes of recorded voices mingle with the sounds of people's conversations. The occasional burst of laughter bounces around the walls. Wearing a white sweater that he knitted himself, Webb leans in to tell me his story. When he smiles his eyes disappear into thin creases, giving him an air of gleefulness.

A grin may seem an odd response to the question I've just asked - why he chose to donate his brain to medical research - but after 17 years participating in a brain study led by the aptly named Carol Brayne of the University of Cambridge, Webb discusses his decision with ease. To him, donation secures a form of immortality.

He explains that he'd knit the sweater he's wearing many years ago, before he lost his wife Ellen. Knitting was something they had done together. "When she died, I packed it in," he says. She had dementia toward the end of her life. This Saturday marks the ninth anniversary of her death. They were married for 57 years.

(Image: Ania Dabrowska, Mind Over Matter)

It's a poignant story in a fitting setting. We are standing in the middle of Mind Over Matter, an exhibition inspired by the research of Brayne and colleagues that is the result of a long collaboration between artist Ania Dabrowska and social scientist Bronwyn Parry. The exhibition focuses on 12 brain donors from Brayne's studies - the stories of their lives and triumphs, and their reasons for donating.

Brayne is an epidemiologist specialising in dementia and healthy ageing. Beginning in the mid-1980s, she helped launch the Cognitive Function and Ageing Studies (CFAS), now a large scale research project which tracks ageing among both healthy adults and those with cognitive decline. So far researchers have conducted nearly 50,000 interviews with participants and successfully taken more than 500 brain donations.

With brain donation, unlike other types of organ donation, it's important to have information about the donor and their mental functioning during life. For years, nurses have visited the homes of future donors to interview them and have them complete a battery of tests. Webb remembers how his wife would laugh, wondering what the research was all about. "They would hold up a pen and ask me what it was," he says. "She used to say to me - this is a pen! She just couldn't understand."

(Image: Ania Dabrowska, Mind Over Matter)

Parry and Dabrowska too spent several years travelling to donors' homes, looking through old photos, admiring mementoes and interviewing them for the Mind Over Matter project.

The reality of aging and death isn't shied away from in the exhibition. In fact, the space itself was chosen for its resonance with dementia. Gutted stoves gape from the walls amid chipped layers of paint and rusted bolts. Several rooms have raw dirt floors where floorboards have been pulled up. And each time you wander into a new room, it's hard to say from which one you came. "I was slightly concerned that it was a little too literal in terms of degeneration," Dabrowska says. But as they moved forward with the project, the exhibition space lingered in her mind. "I was looking for a space that was a labyrinth, where you can get lost and forget your way around."

The exhibition also approaches the medical and physical reality of brain donation. In addition to the many elements that celebrate the donors' lives - audio recordings of them telling stories, video snippets, large portraits of them hanging from the walls, scribbled notes on display - Dabrowska and Parry have also hung white lab coats from pegs next to a cool box labelled NHS: Human Tissue. In one room, there is a photo of a surgical saw. In another, images of scalpels and clamps. Around the corner, there are stacked styrofoam boxes of a suggestive size. In one photograph, a glistening pink brain sags on a metal tray as a rubber-gloved hand approaches with a scalpel.

Brayne was enthusiastic about the project. When Parry first approached her about it years ago, she thought, "If it was done really well, it would be something quite special." And it is. As you wander through the exhibition - or flip through the accompanying book Dabrowska and Parry created - it forces you to consider not only what these pioneering donors have done, or what researchers like Brayne are working to accomplish, but what you might do with your own brain once you're gone, and what that might mean for your loved ones.

When now 84-year-old Eddie Holden first told his daughters Rosemary and Alison that we was going to donate his brain, they supported him. It was only later they realized the magnitude of his generosity. "When you're young, you don't think of these things," Rosemary says. "But when friends start to have strokes, you begin to realize - we won't go on forever." Alison says, "I'm quite proud of him for doing it."

For Brayne, what is most remarkable about the project is that it pulls away the veil for the public. "It shows that it can be done with respect and appreciation", she says.

(Image: Ania Dabrowska, Mind Over Matter)

For Albert Webb, it has been a tremendous experience. After so many years participating in the brain study, and learning about the impact the research he is contributing to could have for dementia or Alzheimer's patients, if anything, he now wishes he could give more of himself to science. "Now I'm thinking of giving the whole lot away," he says, before adding with a laugh, "But no one would want mine! I'm 92."