Enedina Avilés sits on a rocky ledge surveying the city below. She comes to this spot every evening after spending the day earning a living peeling garlic cloves. “This is her moment of meditation,” says Peruvian photographer Alex Kornhuber.
Avilés’s home, a wooden shack with no running water or electricity, is perched on a hillside on the southern outskirts of Lima. She lived in the mountains for most of her life but moved to the city seven years ago after visiting her son and finding a small patch of land where she could build a house.
Kornhuber first met Avilés, 67, in March 2020; since then he has visited her 10 times, getting to know her better each time. Her life has been one of “heartbreaking” hardships, he says. Given away at birth to landowners, she raised livestock until she married at 15. She had seven children, two of whom died, and endured years of physical abuse by her husband.
“She has diabetes and high blood pressure but is happy where she is, even though to most of us, it’s a desperate situation,” says Kornhuber.
Avilés is one of dozens of older people Kornhuber has met over the past two years of an ambitious project to document how Peruvians age in different parts of the country. In 2019, he won a fellowship with the Global Brain Health Institute, which brings together people from diverse disciplines and professions to inform new approaches to brain health across the world.
After a year of researching neurodegenerative diseases and health policy, Kornhuber travelled across the country, from the riverside city of Pucallpa in the Amazon to Nazca in the arid south.
He partnered with Dr Maritza Pintado-Caipa, a neurologist and another GBHI fellow, who has spent the past five years trying to raise awareness of dementia and other neurological conditions, a challenge in a country where the symptoms of diseases such as Alzheimer’s are often dismissed as simply part of getting old, even by other medics. “After I studied neurology in Lima I returned to my home city of Tacna in the south expecting to work, but the regional health director told me there were no neurological disorders in the city – because they had never collected any data on them. For two months I had no patients because no one understood what I did.”
Kornhuber and Pintado-Caipa began to build a picture of a forgotten generation of older Peruvians, ignored by the state, leaving their families to carry the burden of care. This was nothing new for Pintado-Caipa, who has spent years trying to persuade authorities to invest in research, training and equipment to support people with dementia.
“Our physicians are more worried about infectious diseases. If you have to provide money for something then you have to prioritise and we are not a developed country. But we could do more for people [who are affected],” says Pintado-Caipa. “Those who are seen by doctors are often told that forgetfulness is a normal part of ageing and sent on their way.”
But the lack of support for older people and their carers came as a surprise to Kornhuber. “Although I’ve been travelling my country all my life and had seen this [lack of support], now, focusing on elders, it became much more obvious and sad,” he says. “Elders [in Peru] are abandoned. We don’t want to think about old age, we don’t want to look like them.”
Not all of the older people they saw had a neurological disorder, but they all faced hardships that were exacerbated by the pandemic. The Covid-19 pandemic began as Kornhuber embarked on the project, adding an unexpected dimension to the research.
Peru had the highest death rate per capita in the world, a result of a desperately ill-equipped health system, lack of medical supplies, overcrowded housing and a huge informal economy. Many older people had no choice but to continue fending for themselves. “I met one man with a walking frame. He was 88 but lived alone and had to go out to buy food and medicine,” says Kornhuber.
The resilience was what struck Kornhuber above all else, particularly in the mountain communities, where, he believes, a connection to nature and a strong community network help protect against neurological disorders.
“People are illiterate but they have accumulated a lot of knowledge … and they have wisdom and are respected.”
For Kornhuber, the project provided a unique chance to connect with families. “I found that focusing on elders has opened doors for me. When I said I was interested in people’s grandparents, they invited me in. In 30 years of being a photographer, I’ve never had such openness. People wanted to tell their stories.
“Peru is a very diverse country but people don’t know each other. [By showing the photographs] I was able to introduce them to each other. This was probably the most rewarding part of the project for me,” says Kornhuber.
His goal now is to create a website to bring the project to a wider public, featuring photos and stories of the people he has met and information from doctors such as Pintado-Caipa highlighting what healthy ageing means.
“You can’t help but project yourself – how will I end up? Whenever you see an older person who is active and resilient, it is so inspiring.”
Alex Kornhuber’s photographs will be on display at the Naughton Institute, Trinity College Dublin, during the inaugural Creative Brain Week (12-16 March), an event highlighting the intersection of the arts and brain science
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