I spent the last two weeks in-and-around a care home in England that looks after people with dementia and terminal illness, and their families – including, this time, mine.
In four wings, each with 12 residents, 24/7 care is provided by teams of trained professionals who work 12 hour shifts. During the day, for each wing, three carers and a qualified nurse work continuously within yards of the residents; at night, cover is provided by a carer and a nurse.
Their hour-by-hour duties include helping people eat and drink; changing clothes and bed linen; helping people shower and clean; cutting finger and toe nails; helping people use toilets, bed pans, sanitation pads, and commodes; filling in forms; attending staff training sessions.
A lot of the time – a lot – carers sit and talk with the residents, reassure them, read books or magazines together, or simply hold their hands, or hug them.
Twice a day, it’s true, one of the nurses would tour each wing to give medicines to the residents; a few residents needed more intensive medical attention. But I reckon that ninety five per cent of this demanding, time-consuming and emotionally-draining work involved caring – not doctoring, and not ‘curing’.
In my family’s case, we saw a doctor twice during those weeks. The first was when a non-resident General Practitioner (family doctor) popped in for ten minutes, did not sit down, nor look any of us in the eye. He waved a Do Not Resuscitate form around like an election pamphlet, and then left. The second doctor, another GP, came later, at the end – as some regulation or other prescribed – to pronounce my family member officially dead. He performed this service with grace and tact.
These discordant intrusions by doctors did not matter. Those final hours were peaceful, even beautiful, thanks to the quiet, attentive and loving care of the people who surrounded us in the home.
A few hours later, when I turned on the television for the first time in weeks, it was to see the UK prime minister, in London, addressing a room full of people clad in smart suits and name badges.
Speaking in forceful, Churchillian, style, Mr Cameron declared that “we must fight dementia” and announced a £100 million global research project to find a cure. “I know some people will say that it’s not possible”, said Mr Cameron, “but I will not be defeatist. With a big global push we can beat this”.
As I wrote back in December, after the G8 Summit on dementia, the likely outcome of this so-called “race to identify a cure” for dementia will be the creation of a Dementia Industrial Complex. It will run by-and-for the glossily-clad experts in Mr Cameron’s audience – and it will do literally nothing to support the low-paid care workers that supported my family and thousands of others like it in recent weeks.
Neither patients nor carers are even represented – not at all – on the much trumpeted World Dementia Council that was set up after the G8 Summit.
It’s dispiriting, but not surprising, to witness politicians parroting the false promises of the Tech lobby. But it’s a tragedy to see that an organisation that once represented carers has jumped onto the same bandwagon.
With its Dementia Friendly Technology Charter, the Alzheimer’s Society has given its imprimateur to the implausible notion that technology – rather than the presence of human beings – is the best way to enable people with dementia to live independently.
It’s doubly depressing that the Society asked a for-profit tech company, Tunstall Heathcare, to write its ‘charter’. Write its own orders would be more accurate. It is Tunstall ‘s corporate mission that, when it comes to dementia care , we can and should, “buy” peace of mind. “Just press the button” promises Tunstall, “and one of our operators will be on the line.”
And then?
I know I’m emotional right now, but I’ve reflected on this a lot over several years and believe it has to be said: The notion that technology can substitute for the presence and care of human beings in care is not just misguided. It’s evil.
Shelter Without A Concrete Roof
Public performance in Kisangani. Image © Studios Kabako
Studios Kabako, a dance company from Africa, is the winner of this year’s 2014 Curry Stone Design Prize, an important international award. Using dance, theater, and music, Studios Kabako help local communities envision positive alternatives in a city that has known devastating armed conflict over many years. The company has pioneered a form of development that is based on social creativity rather than real estate plays.
Based in Kinsangani, the Congolese performance and theater studio was founded by Faustin Linyekula in 2001 to address social memory, fear, and hope in the aftermath of civil war. During a decade of urban interventions and cultural activities, the studio has enabled a flourishing an ecosystem of dance activities. Studios Kabako are pioneers of a new way to practice ‘rebuilding’ that ‘s based far more on human energy than on pouring concrete.
“Many world regions face terrible fratricidal wars” explained Emiliano Gandolfi, director of the Curry Stone Prize. “We must learn to envisage an alternative to the culture of destruction”. Faustin Linyekula’s work demonstrates the remarkable results that can happen when the transformative power of art is applied to the ways we practically create a sustainable future.
When Linyekula founded the studio young Congolese people, especially, were living without hope – too preoccupied by daily survival to imagine an alternative. As recounted by the renowned theater and opera director, Peter Sellars,“Faustin is training a generation of kids to challenge everything about their surroundings. He has created an energy among youth in Kisangani that insists on moving forward. His work is never self-pitying, there’s always this alertness, this awakeness, that has the spirit of challenge in it. It refuses to say ‘Oh, poor Africa.’ It says, ‘OK, pull your life together. Lift your own game’.”
As a platform, Studios Kabako is light and mobile. Although the studio maintains studios in the city centre, it takes its work to the rural fringes and to vacant areas of Kisangani in the form mobile performances. Studio Kabako is currently working on plans for more facilities within the city that combine environmentally friendly technologies, communal living systems and new educational models, all of which are unprecedented in this region.
“Culture is one of the most powerful means of providing a shelter for a community. That shelter doesn’t have to be a concrete roof.” Synthetized Suad Amiry, founder of RIWAQ, winner of the CSDP award in 2012, and member of this year’s jury.
(The author, John Thackara, was also a member of the jury).