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Travellers to Unimaginable Lands by Dasha Kiper review – how dementia changes lives

A clinical psychologist turns the spotlight on caregivers in this profoundly compassionate study

A n elegant woman enjoys a gin and tonic and dinner with her husband in a cosy Italian restaurant near their Greenwich Village apartment; their relaxed, lighthearted conversation, long familiar to them, doesn’t miss a beat. But as the time to leave this regular date draws near, he bids her farewell and she, in practised response, surreptitiously changes her dressy shoes to trainers so that she can rush home to arrive before he does. Once there, their dinner will be entirely forgotten to him and, in a painful reversal of their previous intimacy, he will ask her to leave – in the past he has evicted her to spend the night in the hallway or even called the police. He will not believe that they are married, and will react to evidence to the contrary – their shared belongings, anecdotes of their life together – as though it were planted or invented, a rotten fraud being perpetrated on him.

In Travellers to Unimaginable Lands, Dasha Kiper, a clinical psychologist who works with caregivers to people suffering from dementia, is primarily focused on Elizabeth, the wife; what this form of apparent rejection means to her, and how she is able – or not – to negotiate it. There is no story in this book that is not equally heartbreaking: whether it is quotidian, as in the mother who repeatedly removes items from the freezer despite her daughter’s dogged attempts to stop her with entreaties or taped-up instructions; or whether it is comparatively elaborate, as in the elderly woman who befriends the dead authors in photographs on the books she loves, going so far as to invite Stefan Zweig for dinner and ignoring her husband as she attempts, with no outward sign of success, to make conversation with him.

It is striking, though unsurprising, how many of these incidents revolve around the rituals of food, or other daily activities, such as shaving or showering. In the drama of delusion, home is the theatre, the meal table a frequent stage set, and the domestic scene comes freighted with memories and associations. Kiper works only with family members caring for those with Alzheimer’s or other types of dementia, rather than healthcare professionals, and is therefore highly attuned to the way that individual histories affect responses to this new, radically altered reality. Writing about “dementia blindness” – how long it takes relatives to recognise or acknowledge the new reality – she notes that “invariably, a caregiver’s most susceptible blind spot is an old familial wound”. Thus we learn how the freezer that has become a battleground is an echo of a mother’s previous attempts to control her daughter’s diet, and her daughter’s subsequent eating disorder. Those taped-up notes, Kiper observes, are a frequent sight in the dementia household, an attempt at order that is rarely effective.

Kiper marshalls her scientific evidence with extreme care to make the case that the “healthy” brain will inevitably founder when confronted with a mind that is fracturing. We default to making sense of what we see, to building relationships on the basis of a shared reality, to believing in an essential self that, even when threatened by disease and deterioration, persists. When, for example, a patient appears to understand perfectly well what is happening around them, or when they exhibit behaviour strongly suggestive of the personality we know, we are geared to fill in the gaps, to keep the show on the road; when that fails, we might become frightened, filled with grief and rejection, bewildered.

Travellers to Unimaginable Lands is a work of exceptional compassion. Kiper attempts to show caregivers that their reactions – of anger, frustration, disbelief, isolation, immense sadness – are not merely understandable but a function of their own brain’s operations. It is also a deeply imaginative response to that “unimaginable” territory which must, somehow, be navigated. Anyone on that journey will surely find this book immeasurably valuable.

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Travellers to Unimaginable Lands review: The true toll of dementia

In a wise and challenging book, Dasha Kiper focuses on the forgotten people caring for those living with dementia

By James McConnachie

17 February 2023

Dementia can be a cruel disease, both for the people with the condition and those who love and look after them

Jorm Sangsorn/iStockphoto/Getty Images

Travellers to Unimaginable Lands Dasha Kiper (Profile Books)

PEOPLE who care for those living with dementia, says Dasha Kiper, are its “invisible victims”, 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 98-year-old Holocaust survivor in the early stages of Alzheimer’s disease and, after completing a master’s in clinical psychology, she spent 10 years counselling…

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Travellers to Unimaginable Lands by Dasha Kiper: Consider the carers

Surprisingly engaging book examines the lives impacted by loved ones with dementia.

Dasha Kiper illustrates how a caregiver’s supposedly 'healthy brain' will struggle to adapt or understand the complexities of a brain impaired by dementia. Photograph: PA Wire

Taking its title from neurologist Dr Oliver Sacks’ collection of intriguing case studies, The Man Who Mistook His Wife for a Hat, Dasha Kiper’s Travellers to Unimaginable Lands, casts a similarly astute and humane eye over the lives of people impacted by neurological illness. Kiper’s book focuses on those directly affected by dementia; an ever-growing community now numbering 55 million worldwide. Like Dr Sacks, her experience – as live-in carer for a Holocaust survivor with Alzheimer’s disease then as an advocate and counsellor for caregivers – has deeply informed the ideas presented in the book.

Each chapter opens with an engaging personal story. Honestly and without judgment, Kiper presents people struggling to connect and interact meaningfully because dementia is driving them apart. Those living or working with someone who has a dementia will instantly recognise many of these scenarios and appreciate the deep respect and unflinching candour with which Kiper analyses the impact on a relationship.

We are introduced to a husband whose sudden religious piety is driving his wife up the walls, a daughter whose mother’s lifelong stubbornness is exacerbated by her dementia diagnosis and a son whose father refuses to see him as a fully grown adult and mocks his inadequacies.

Unlike Sacks, Kiper has chosen not to focus upon the patients. Her book centres on the problems that caregivers routinely face. She draws upon her own experience, fascinating psychological experiments, philosophy, neurology and even literature to show how a caregiver’s supposedly “healthy brain” will struggle to adapt or understand the complexities of a brain impaired by dementia. The science sits easily next to the stories, making for a surprisingly engaging read.

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In the US, where Kiper is based, more than 16 million caregivers, many of whom are family members, provide $16 billion worth of unpaid care. The statistics in the UK and Ireland read similarly. Many caregivers find their finances, physical and mental health adversely impacted by their responsibilities. Whilst they often choose to care for a loved one it can be a thankless and draining experience.

What marks Travellers to Unimaginable Lands as a unique and essential read is the neurological insight which Kiper includes alongside her case studies

Of late there has been a number of wonderful books exploring the carer’s perspective, casting much-needed light on both the joys and difficult realities of looking after a person who has dementia. Recently, I’ve read and enjoyed some painfully honest accounts including The Reluctant Carer, which was anonymously written, and Pope Lonergan’s hilarious and poignant I’ll Die After Bingo. It is vital that caregivers see their experiences accurately and respectfully portrayed. It helps reveal their immense social contribution and, in an ideal world, should inform the policymakers when it comes to providing meaningful support.

What marks Travellers to Unimaginable Lands as a unique and essential read is the neurological insight which Kiper includes alongside her case studies. Though explaining the science doesn’t necessarily make the caring experience more bearable, understanding why caregivers fall into unhelpful patterns of thinking can help to alleviate blame and guilt. It’s fairly common to hear long-term carers of those with dementia expressing disappointment in themselves. Though they understand that their loved one’s brain has been irreparably damaged, they sometimes continue to expect impossible standards of cognition and behaviour.

In theory a wife might understand why her husband is more likely to repeat the same story ad nauseam since his dementia diagnosis. In practice, it’s difficult to maintain interest when she’s heard the story 50 times. Similarly, a daughter whose mother no longer recognises her, may understand that her brain is neurologically impaired and yet still lose her temper or become emotional when the same woman calls her by the wrong name.

[  Eleanor Catton on Jacinda Ardern’s ‘pretty huge betrayal of young people’ in New Zealand  ]

[  Roald Dahl, JK Rowling and Dr Seuss: Language police to the left, book-banning zealots to the right  ]

Kiper’s book is quick to acknowledge that caring is difficult. She admits losing her temper. She shares a story from Sacks’s book showing that even he occasionally made mistakes when it came to caring for those with dementia. On first reading, I questioned the point of this book. There are no easy answers or quick fixes. There are no solutions to the problems posed by dementia. Kiper’s basic theme, expanded to explore various specific scenarios, is the hypothesis that the healthy brain of a caregiver is incapable of fully adapting to the proclivities and nuances of a dementia brain.

I was intrigued by this idea. I was also left a little cold. There is little here to offer a carer whose daily existence is an ongoing struggle not to lose patience or hope. Gradually, I began to realise that this somewhat bleak science is actually Kiper’s gift to the weary caregiver. There is no such thing as a perfect carer. Everyone struggles. Everyone will, from time to time, fail. The caregiver can’t be blamed for this. It is just the way the human brain is wired. Kiper’s book insists that caregivers go a bit easier on themselves.

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Travellers to Unimaginable Lands : Dementia, Carers and the Hidden Workings of the Mind

£ 10.99

by Dasha Kiper

ISBN 9781800816206

Some of you may already be familiar with this recent BBC 4 Book of the Week – a book on Dementia and how living with dementia effects not just the brain of the sufferer, but also the brain of the caregiver.  A mixture of neuroscience, psychology and literature, Kiper brings together keenly observed, often heartbreaking case studies to explore and gently expose the complex experience of caring. Her writing is full of compassion, backed up with clinical knowledge, and will surely be of immense value to all who find themselves co-habiting in an unfamiliar world.

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Travellers to Unimaginable Lands (Hardback)

Dementia, Carers and the Hidden Workings of the Mind

Dasha Kiper

An illuminating, compassionate exploration of the psychology of caregiving - and the mysterious world of the human mind

A Guardian Best Book of 2023

A Telegraph Best Summer Book 2023

A RADIO 4 BOOK OF THE WEEK

'A book so humane and quietly profound that everyone should read it' Bee Wilson, Financial Times 'The best book I have ever read that explores the effect on the brain of the carer, when someone has dementia. Unmissable' Professor June Andrews, dementia expert and author of Dementia: The One-Stop Guide 'This book will forever change the way we see people with dementia disorders-and the people who care for them.' Lori Gottlieb, author of Maybe You Should Talk To Someone

A husband believes his wife is an imposter. A man's sudden, intense Catholic piety provokes his wife. A mother and daughter struggle to come to terms with the disease that intensifies an already dependent relationship.

At their root, these existential dilemmas grow out of long-established patterns of behaviour that bind together patients and caregivers. Travellers to Unimaginable Lands explores the complex and profound psychology of caregiving, illuminating how the healthy brain's biases and intuitions make caring for people with dementia disorders so profoundly and inherently difficult.

Blending neuroscience, psychology, philosophy and literature with beautifully-observed case studies, Kiper illuminates the underlying mental mechanisms behind carers' experiences, dispels the myth of the perfect caregiver and, in the process, opens the door to understanding and forgiveness.

Publication date: 02/03/2023

£ 16.99

ISBN: 9781800816190

Imprint: Profile Books

Subject: Biography & Memoir , Health & Wellbeing , Self Help & Advice

Travellers to Unimaginable Lands (Ebook)

A Guardian 'Best ideas book of 2023' A RADIO 4 BOOK OF THE WEEK 'The best book I have ever read that explores the effect on the brain of the carer, when someone has dementia' Professor June Andrews, author of Dementia: The One-Stop Guide

Dasha Kiper was twenty-five when she first became the live-in carer for a Holocaust survivor with Alzheimer's disease. She soon discovered the emotional strain and challenges of caring for a person whose condition disrupts the rules of time, order and continuity. In Travellers to Unimaginable Lands, Kiper explores the complex and profound psychology of caregiving, illuminating how the healthy brain's biases and intuitions make caring for people with dementia disorders so profoundly and inherently difficult.

£ 9.99

ISBN: 9781800816213

ISBN 10 / ASIN: B0B6GNQLB3

Travellers to Unimaginable Lands (Audiobook)

'The best book I have ever read that explores the effect on the brain of the carer, when someone has dementia. Unmissable' Professor June Andrews, dementia expert and author of Dementia: The One-Stop Guide

Publication date: 06/04/2023

£ 24.99

ISBN: 9781800819351

ISBN 10 / ASIN: B0BZJKQL62

Read by: Holly Linneman

Travellers to Unimaginable Lands (Paperback)

Publication date: 07/03/2024

£ 10.99

ISBN: 9781800816206

Reviews for Travellers to Unimaginable Lands

  Guardian

Bee Wilson   FT

James McConnachie   New Scientist

Steven Poole, 'Best ideas books of 2023'   Guardian

  Daily Telegraph

  Irish Times

  Radio Times

'The Books to Read in 2023'   Financial Times

  New Scientist

Charlie Runcie, 'On My Wavelength'   Daily Telegraph

Jackie Law   Bookmunch

Lori Gottlieb, New York Times-bestseller author   Maybe You Should Talk To Someone: A Therapist, Her Therapist, and Our Lives Revealed

Prof June Andrews, author   Dementia: The One-Stop Guide

Norman Doidge, author   The Brain that Changes Itself

Gwen Adshead, author   The Devil You Know

David Eagleman, neuroscientist at Stanford and author   Livewired

Roz Chast, author   Can't We Talk About Something More Pleasant?

Vivian Gornick  

Robert Kolker, author   Hidden Valley Road

Dasha Kiper is the clinical consulting director of support groups at The CaringKind (formerly 'The Alzheimer's Association'). She was born in Russia, raised in San Francisco, and makes her home in New York. She first became a live-in caregiver as a graduate student at Columbia University where she received an MA in Clinical Psychology. For the past decade she has counseled caregivers, led support groups, and trained and supervised mental health professionals, as well as former caregivers, who now lead support groups.

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Travellers to unimaginable lands: dementia, carers and the hidden workings of the mind audible audiobook – unabridged.

A husband believes his wife is an imposter. A man's sudden, intense Catholic piety provokes his wife. A mother and daughter struggle to come to terms with the disease that intensifies an already dependent relationship. At their root, these existential dilemmas grow out of long-established patterns of behaviour that bind together patients and caregivers. Travellers to Unimaginable Lands explores the complex and profound psychology of caregiving, illuminating how the healthy brain's biases and intuitions make caring for people with dementia disorders so profoundly and inherently difficult. Blending neuroscience, psychology, philosophy and literature with beautifully observed case studies, Kiper illuminates the underlying mental mechanisms behind carers' experiences, dispels the myth of the perfect caregiver and, in the process, opens the door to understanding and forgiveness.

• Listening Length 5 hours and 53 minutes
• Author Dasha Kiper
• Narrator Holly Linneman
• Audible release date 6 April 2023
• Language English
• Publisher Profile Audio
• ASIN B0BZJJBWQ7
• Version Unabridged
• Program Type Audiobook
• See all details

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