Alternative realities: caring for people with dementia
Roula Khalaf, Editor of the FT, selects her favourite stories in this weekly newsletter.
After my mother — a brilliant Shakespearean scholar — was diagnosed with Alzheimer’s in 2018, we seemed to lose her, piece by piece. At first, she just repeated herself a lot and got disoriented when away from home. Later, she could no longer read a book or identify her grandchildren.
Eventually, she had even forgotten her own tastes, such as the fact that she adored eating pears or reading Shakespeare’s sonnets. But if I read one of the sonnets out loud to her or gave her a pear to eat, it would elicit a beautiful smile, as if she were experiencing it afresh. Alongside the more immediate challenges of care, dementia — as my experiences showed — raises troubling questions about who a “person” really is.
According to the World Health Organization, dementia (or dementias, since it is really an umbrella term covering multiple conditions including Alzheimer’s and vascular dementia) is now the seventh leading cause of death globally. Cases are rising dramatically across the world along with the rise in ageing populations.
There has never before been such an intense interest in the disease, both from a medical perspective — there is still no prospect of a cure although there have been recent breakthroughs on blood tests to detect it at a much earlier stage — and from a social one: how do we care for the millions of new patients? There has been a corresponding boom in books about dementia from Contented Dementia by Oliver James to children’s books (Big Bear, Little Bear and Dementia by Katie Faulkner).
Two new books — My Father’s Brain by Sandeep Jauhar and Travellers to Unimaginable Lands by Dasha Kiper — approach the subject not from the perspective of sufferers but of those who care for them. Both authors pose the same question, but from different angles: if this isn’t the same person you have loved all these years, who is it you are really caring for?
One of the case studies in Kiper’s book concerns Mitch, an elderly man in New York who has forgotten that he lives with his wife Elizabeth, or that she even is his wife. Every evening, Elizabeth has to go through an elaborate rigmarole of trying to persuade her own husband to let her stay in the apartment where they have lived together for 15 years. When Elizabeth shows Mitch evidence of their shared lives — a wedding photograph, for example — he accuses her of lying. Sometimes, he throws Elizabeth out and she is forced to sleep in the hallway. Despite this harsh treatment, Elizabeth blames herself for Mitch’s behaviour, saying that she is the one who caused it by “pleading and arguing” with him.
This is one of many startling and moving case studies of dementia sufferers and their carers in Travellers to Unimaginable Lands, a book so humane and quietly profound that everyone should read it. The title phrase comes from the renowned neurologist Oliver Sacks, who described his patients (not all of whom were dementia sufferers) as having travelled to lands “of which otherwise we should have no idea”.
Kiper, a clinical psychologist who offers counselling and support for caregivers of Alzheimer’s in the US, argues that carers, too, are forced to visit these lands even though what they find there may be baffling and upsetting.
Take Henry, an octogenarian whose wife Ida speaks to book jackets as if they were human beings, who is one of the carers supported by Kiper. Henry’s wife brings a copy of The World of Yesterday by Stefan Zweig to the dinner table and pays it more attention than she does her own husband, prompting Henry to shout “Your craziness is making me crazy”. As Kiper explains, carers “must contend with people who are simultaneously lucid and confused, impaired yet oddly nimble, themselves and yet not themselves”.
One of Kiper’s main themes is that dementia affects the brains and behaviour of carers as well as those of sufferers themselves. Almost every carer Kiper meets feels guilty for not being kind or patient enough and will urge themselves to “get a grip, to work harder, to be nicer”. She argues that the “healthy” brain with its desire for logic and order is fundamentally ill-equipped to deal with interacting with someone with Alzheimer’s. “I wanted caregivers to understand”, Kiper writes, “that it was not character flaws that made caregiving so fraught, but rather their own brain’s intrinsic workings.”
One of the hardest things is accepting that so much of how a person is behaving is caused by their impaired brain that suffers from a build-up of sticky plaque containing a protein called beta-amyloid — rather than their essential self.
The difficulty of caring for a parent with dementia is also the subject of My Father’s Brain by the American cardiologist Sandeep Jauhar, who gives a blow-by-blow account of how he and his siblings coped with his father’s Alzheimer’s, from the early phase of mild forgetfulness to the final grim stages where he can’t get out of bed. Although his book is not quite as original or insightful as Kiper’s, where it excels is in its clear scientific explanations of what happens in the brain as dementia progresses and in its authentic descriptions of the sheer hell of it for all concerned.
Early on, Jauhar’s father — once a distinguished researcher — refuses to accept that there is anything wrong with his memory and insists that the only reason he can’t draw a clock face (one of the main ways to test for impaired spatial reasoning) is because he chose not to “go into the details”.
Later in the illness, to the horror of Jauhar and his siblings, he becomes uncharacteristically aggressive, calling his long-suffering live-in carer a “two-bit whore” and throwing orange juice at her face. Throughout it all, Jauhar finds it almost impossible to persuade his father that he actually needs help, let alone that he is behaving badly.
“It is a sad dynamic: being unaware of, or unable to think about, one’s disease because of the disease,” writes Jauhar. There is a word for this: anosognosia. This lack of self-awareness in Alzheimer’s patients, which can feel so infuriating to relatives, is a response to damage to the frontal and parietal lobes of the brain. But self-awareness is also something that relatives can lose hold of, as Jauhar describes with great perception. As a physician, Jauhar knows the “futility” of having the same arguments with his father over and over again but as a son, he keeps trying to reason with him as if he were the same person he once was.
In focusing so much on his own family’s case, Jauhar’s book — much of which consists of pages of dialogue between the author and his relatives — lacks Kiper’s panoramic sense of how dementia plays out in different cultural settings. But My Father’s Brain is still deeply moving, especially when Jauhar describes his own sense of confusion about how to do the right thing as his father declines. How can you decide whether your father would “want” to be kept alive on an IV drip, he asks, when this father in front of you is not the same person that he was a month ago, never mind 10 years ago?
The conclusion of both Kiper and Jauhar is that, as we continue to wait for a significant medical breakthrough on dementia, we need to do a much better job of looking after not just those with Alzheimer’s but those who care for them. Kiper argues that we should “normalise the caregiver’s denial, anger, frustration, and helplessness”. She also suggests that — hard as it may be — we should celebrate the flashes of connection that Alzheimer’s sufferers can still have with their carers. They may be heartbreakingly far from the person we once knew but their minds, she argues, are still “worth knowing”. I certainly found this with my mother, who by the end could hardly speak and yet would still tap her feet in bed when we listened to Fred Astaire songs together.
Travellers to Unimaginable Lands: Dementia, Carers and the Hidden Workings of the Mind by Dasha Kiper, Profile £16.99/Random House $28, 272 pages
My Father’s Brain: Understanding Life in the Shadow of Alzheimer’s by Sandeep Jauhar, Oneworld £16.99/Farrar, Straus and Giroux $28, 256 pages
Bee Wilson is author of ‘The Way We Eat Now’
Join our online book group on Facebook at FT Books Café