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 linens; 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.
As the days and nights went by, I discovered that these frontline staff were supported by a cohort of cooks, cleaners, managers, building maintainers, vehicle drivers, physiotherapists, entertainers, craft and cookery teachers, and social workers. There was a petting dog handler. And a woman chaplain.
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, to pronounce my family member officially dead. He performed this service with grace and tact — but it was some three hours after she had breathed her last.
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 £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 organization 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.”
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.
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