The Daily Telegraph - Saturday - Review
Like living in ‘Waiting for Godot’
A counsellor turns to Beckett and Bartleby to explain how it feels to care for people with dementia
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When we think of dementia, we tend to imagine a diseased brain attempting to make its way in a world of healthy brains. But what if things aren’t so clear-cut? What if our “healthy” brains have evolved in particular ways that make an encounter with someone else’s dementia all the more fraught and upsetting to both parties? What if caregivers are just as much victims of Alzheimer’s as their charges?
Such are the questions explored in Travellers to Unimaginable Lands, a fascinating account of the psychology of caregiving by Dasha Kiper, a counsellor to caregivers. Each chapter takes the form of a case study, and so we meet Mitch, a man who would have a romantic dinner with his wife and then curtly tell her to leave; and Ida, a woman who has elaborate dinner conversations with the author photos on book jackets.
As Kiper tells Mitch’s wife and Ida’s husband, our own cognitive biases and folk-philosophical beliefs mean that we are bound to get caring wrong, and that patient and caregiver “unknowingly collaborate in misinterpreting the disease”.
Memory, for example, doesn’t work the way we imagine it does, either for the patient or the caregiver. People with Alzheimer’s often still retain implicit memory (how to do things, what they feel about people), even as they lose explicit memory of certain events. Their carers, meanwhile, see the person in front of them through the lens of memories of when they were healthy, and so attribute to them more wilfulness or cunning than they really possess.
Nor is it accurate, Kiper argues, to think of dementia simply as a “loss of self ”, but rather a splintering into different selves. She draws productively on the work of neurophilosophers (Patricia Churchland) and ethicists (Derek Parfit) to interrogate our ideas of personal identity, and the vast amounts of unconscious processing that underlie our apparently chosen actions. “Consciousness may be the last to know why we act in certain ways,” she writes, “but it is the first to take credit.”
Only occasionally does Kiper actually overstep the bounds of what is scientifically justified, as when she is discussing the social nature of reasoning. “Evolution could have pushed us toward becoming expert abstract thinkers and problem solvers, but it didn’t.
Instead, it enhanced our social reasoning in order to help us survive in increasingly complex social networks.” Or perhaps – on the evidence of expert abstract thinkers through history – it happily did both?
Clinical language itself can be unhelpful, the author argues: doctors tend to talk about a patient’s “insight” or “deficit”, but such terms do not “allow for ambiguity”.
And ambiguity is the rich seam she mines throughout, with the help of literature as well as science, as when she writes about Herman Melville’s scrivener Bartleby, who famously responds to commands by diffidently saying “I would prefer not to”, to the increasing exasperation of his boss. “In our c o n t e m p o rary, diagnosis-ready culture,” Kiper writes, “Bartleby would be assigned a mental or neurological illness.”
The repetitive chatter in Samuel Beckett’s Waiting for Godot, too, is cited as a bleak yet funny analogue to the deceptive ease of conversation even in the midst of advanced illness.
There can be humour in this subject, after all, as when Kiper describes one client’s mother: “Her repetitive badgering, lack of emotional control, iffy memory, and self-absorption were obvious signs. And yet Mila did not have Alzheimer’s at the time.” Another chapter begins, unimprovably: “When Peter Harwell’s seventynine-year-old mother punched a doctor in the face...” (Readers may differ over whether the doctor was asking for it.)
What Kiper wants most of all is for caregivers to stop feeling guilty about their inevitable failures and missteps. Brain biology means that self-control becomes depleted; even blaming the patient for their behaviour can be a way of paying them tribute by insisting on continuing to treat them as moral beings.
We simply don’t know the answers to the fundamental questions of personal identity and consciousness, she observes; yet “somehow” caregivers are “supposed to overcome a philosophical conundrum that has confounded thinkers for nearly two millennia”. The message of this compassionate book is that confusion is, deep down, part of the human condition.
‘Her self-absorption was an obvious sign of Alzheimer’s – but she didn’t have it’