Author, journalist and campaigner Nicci Gerrard is a pocket dynamo of warmth and energy. She speaks quickly, words tumbling out of her mouth, compelling us to see things in new and different ways.
In 2014 she co-founded John’s Campaign with Julia Jones. Its aim is simple: “that the carers of those with dementia should have the same rights as the parents of sick children to accompany them to hospital” and its inspiration came from her late father, the doctor and scientist John Gerrard.
For ten years John, who had a deep love of nature, lived well with dementia. “He was”, says Nicci, “going gradually into the darkness”. But this ended with a “sudden rupture” when John went into hospital with leg ulcers and remained there for five weeks. Strict visiting hours, plus an outbreak of norovirus, meant that this man, who’d entered healthy, mobile, articulate and contented, emerged skeletal, immobile, inarticulate, unable to recognise people he’d lived with for decades.
John’s experiences and the resulting campaign led Nicci to explore dementia practically, through talking to doctors, carers and those living with it, and more profoundly, in philosophical, almost existential ways.
The result is her quite beautiful book, What Dementia Teaches us About Love. “What happens when memories are lost? Who are we then?” she writes. “If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in?”
Most recently, as Coronavirus has swept across the globe and the doors of this country’s 21,000 care homes have clanged shut, John’s Campaign has turned its attention to those who live in them, 70 per cent of whom have dementia. Their relatives have been unable to visit them for months, leaving these vulnerable people bewildered and heartbroken because they think they’ve been abandoned by those they love.
Which is why John’s Campaign asked the Government to review the guidance around care homes. Family carers, say Nicci and her fellow campaigners, are not visitors but vital to the health and selfhood of people with dementia, and should be recognised as such, and given the same protection, testing and status as key workers. Government guidance was updated in the middle of October but John’s Campaign said at the time that this only made things worse and they are not giving up the fight.
“In the name of infection control, great harm is being inflicted,” Nicci wrote in the Guardian. “People can die of heartbreak.”