“If you’re talking to Teun, it’s bound to be about dementia.” That is the refrain of the friends of Teun Toebes, a remarkable nursing student from the Netherlands. At the age of 21, nearing the end of his studies and with a background in caring for patients with dementia, he made the radical decision to move into a nursing home to live as housemate, not employee. The result, this book, has already made waves in his homeland, where it was a bestseller and hand delivered to the prime minister.
Toebes’s account of his experience is a “heartfelt indictment”. Rather than rounding on the nursing staff – of which he is, still, committedly part – he urges people to remember what care is supposed to be about. His dual role – as housemate and carer – allows him to face both ways and to share his fellow workers’ frustrations. As with so much else in a modern, bottom-line economy, the enemy is a box-ticking levelling out, which favours risk-free, insurance-minded efficiency over a personalised model, which “cares for people” rather than determining “how to best care about them”. Toebes, now 24, takes this safety-first autocracy to task, criticising supplier monopolies, the favouring of robot dogs over the real, squeezable thing, the medicalisation of anyone deemed “difficult” and the use of television as a noisy sedative. The exterior and interiors of care homes are, he makes clear, demoralisingly featureless. Residents are made to feel second-class because of the removal of self-management and in other, more insidious ways too.
Being locked up on the basis of a care plan is in itself disconcerting, but Toebes goes on to show how his housemates’ self-worth is further unthinkingly eroded. For the first time in their lives they have no say in anything; they no longer have access to money, nor a vote in activities forced upon them. “Why would such a diagnosis condemn you to hours of listening to [Dutch violinist] André Rieu?” is a poignant question, especially for anyone who has worked from home.
The book is at its strongest when it’s mythbusting: Toebes is irate at the misconception that dementia patients become “childlike”, noting adult, candid conversations he has with many of the residents about their lives and his own sexuality. They still love what they always did and are demonstrably capable of happiness, whether on a jaunt Toebes arranges to a housemate’s family or at the regular Friday drinks he hosts in his room.
His optimism – and, inevitably, his age – lay him open to charges of naivety, but he sprinkles in enough self-interest to show he isn’t simply a wilful dreamer. There is a “dementia tsunami” on the way, he writes, the stats proving that his generation need to prepare themselves for encounters with the illness, and he’d rather start thinking about it now, arranging a future in which treatment is more inclusive than the current version he has been complicit in perpetuating. He also acknowledges that, for all his attempts to integrate, he can’t know the depth of despair felt by his housemates, given he has the access codes to the doors and can leave at any time.
Nor is Toebes seeking new government legislation. Rather, his vision for the future of care is one in which we all pitch in, from relatives and friends of patients to the wider community. Having first-hand experience means he’s aware that overladen carers can’t shoulder the burden of arranging trips or know how best to connect with individuals. He feels that by making care homes part of their local surroundings, rather than gated outliers, it is possible to make people with dementia feel less forgotten, or forlorn, and that by providing better sorts of tailored stimuli, the eight years, on average, in which they’ll live after diagnosis may be a happier, less custodial time.
“If my housemates are to be believed, things were better in the old days,” Toebes writes. “But I personally don’t believe in a better past; I believe in a better future.” His overarching thesis – that just because things are done one way doesn’t mean they have to stay the same – is compelling and humane. It remains to be seen if his #HumanForever campaign will catch on in Britain as it has in the Netherlands.
Declan Ryan’s first collection of poetry, Crisis Actor, is published by Faber
• The Housemates by Teun Toebes (translated by Laura Vroomen) is published by September Publishing (£12.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply
