Dasha Kiper (Profile Books)
PEOPLE who care for those living with dementia, says Dasha Kiper, are its 鈥渋nvisible victims鈥�, rarely discussed in the research literature and given little support. Kiper has made a career out of listening to them. At 25, she moved in with a聽98-year-old Holocaust survivor in聽the early stages of Alzheimer鈥檚 disease and, after completing a master鈥檚 in clinical psychology, she聽spent 10 years counselling carers and running support groups.
Travellers to Unimaginable Lands: Dementia, carers and the hidden workings of the mind is her聽first book. It tells the stories of people with dementia and of their carers. Modelling herself on Oliver Sacks, Kiper weaves psychological and neurological research into her聽own insights about the work of writers including Samuel Beckett,聽Franz Kafka, Herman Melville and聽Jorge Luis Borges.
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Kiper can write with a Sacks-like clarity. One carer 鈥渟eemed coiled in place, as though it were painful to sit still鈥�, while her mother 鈥減aced back and forth, with an irregular, limping gait鈥� and each shuffling step felt like an interrogation鈥�.
But where Sacks鈥檚 cases are outlandish, Kiper鈥檚 are desperately ordinary. Take Jasmine, who taped notes on doors and walls, imploring her mother not to take food out of the freezer, leave the house or be violent. Or Elizabeth, whose husband sometimes denied knowing her and would throw her out as a stranger.
鈥淧eople always ask about the patient,鈥� Elizabeth tells Kiper. 鈥淟et me tell you something, the patient is聽fine; it鈥檚 the caregiver who鈥檚 going crazy.鈥� Carers often mirror the behaviours of those they look after,聽Kiper notes, engaging in聽denial, distortion, arguing, blaming聽and endless repetition.
The key driver is what Kiper calls dementia blindness. Much in the way our brain fills in for our visual blind spot, so carers see the person they are used to seeing. Discussing this, Kiper refers to writer Nassim Nicholas Taleb鈥檚 theory of narrative fallacies, philosopher Daniel Dennett鈥檚 intentional stance and neuroscientist Michael Gazzaniga鈥檚 left-brain interpreter聽鈥� unconscious, evolved processes 鈥渞esponsible for聽sweeping inconsistencies and聽confusion under the rug鈥�.
Conspiring with these processes are our emotional biases, Kiper writes, including our evolved need for 鈥渕utually agreed-upon reality鈥�, which is most acute with those we are close to and in situations where we aren鈥檛 in control. This creates what she calls the carer鈥檚 dilemma: to 鈥渁ccept something less鈥� than the聽person we knew means letting go of our idea of who they are, which risks dehumanising them.
Kiper鈥檚 literary interpretations echo her radical leap: to see impossible situations from the point聽of view of the carer or family member. Melville鈥檚 Bartleby, the Scrivener聽鈥� the story of a clerk who聽rejects everything, saying he聽would 鈥減refer not to鈥澛犫�� is seen from his employer鈥檚 viewpoint as he聽struggles to make sense of the situation, while being in many ways needier than his self-contained clerk. Kafka鈥檚 Metamorphosis is聽read as a portrait of family dynamics taken to absurdity. Beckett鈥檚 Waiting for Godot dramatises how 鈥渨e create and acknowledge the possibility that clarity, meaning, and connection exist even when there appears to be聽only strangeness and futility鈥�.
These aren鈥檛 just original readings, they have a compassion that bring Sacks to mind. Carers, Kiper writes, are 鈥溾�榯ortured鈥� in living rooms and kitchens, rooms that hold memories and trigger old patterns of behaviour, rooms that聽damn them to choose an unhappy or unnerving dynamic over聽no dynamic at all鈥�.
This is a wise book, and one that聽is unsettling in the best way.
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