Dementia has overtaken cancer as the most feared ailment among over 50s, several studies show. The sense of dread attached to losing your mind – allied with fact that dementia is treatable but not curable – can act as a barrier to seeking help.
Researchers and advocacy groups have made great strides in normalising conversations surrounding Alzheimer’s and related diseases but for many people dementia remains so perplexing or upsetting they would prefer not to think about it.
Philosopher Noga Arikha can understand the impulse, having "held on to the threads" of her mother's mind "as they were unspooling" until her death last year. "We don't want to see it, we don't want to look at it, I think it scares all of us," says Arikha, speaking to The Irish Times by Zoom from London. "We are all equally fragile, we are all equally potential patients. Dementia can happen to anyone."
In a new book, The Ceiling Outside: The Science and Experience of the Disrupted Mind, Arikha explores dementia within a spectrum of mental illnesses while trying to make sense of her own family loss. “Where has my mother gone?” she asks poignantly after her mother’s diagnosis.
She approaches the question as an “historian of ideas and science humanist” – not a scientist per se but as a philosopher who has one foot in the research laboratory. For the book, she shadowed clinicians at a psychiatric hospital, the Pitié-Salpêtrière in Paris, as they worked with people both young and old suffering a range of mental health problems.
“None of this is happy,” she admits, but there are consolations to examining the disrupted mind. One is the realisation that her mother didn’t necessarily suffer. In her final years she lived “mostly within a pure present”, something that “is hard for many of us to achieve”.
Blindspot
Scrutinising the abnormal can also make it seem less alien. Arikha explores the concept of anosognosia, or unawareness of one’s own state of illness, and observes “all of us are somewhat unaware of what ails us most centrally, and much of the time live within our own, neurotic blindspot”.
Is the gap between a healthy mind and dementia closer than we think? “There’s a big difference between that playful, very loose interpretation of that word [anosognosia] and the actual thing,” Arikha replies. “The real thing is really quite extraordinary; it’s an incapacity to know about one’s own ailments. In dementia, it also saves a person. My mother wasn’t aware what was happening to her. So she was actually very happy, blissfully happy, living in the present… I think it’s harder for the person outside than the person who is living it.”
Does her experience suggest that living in the present is the best way of trying to maintain a connection with a loved one who has dementia?
“It’s the only way. You change your assumptions, you change your vocabulary, you change your relationship. It’s painful. It’s gradual loss, gradual mourning. It’s very painful but what can you do.”
Immersing herself in the science of mental health eased her anxiety. “Despite all this loss and suffering there is a kind of redemption in being able to understand,” she adds.
As for that science, she sees hope in expanding research on interoception. Sometimes called the “sixth sense”, it is the way in which the brain senses, interprets and integrates signals originating from the body.
The idea that your body is in constant dialogue with your brain overturns the traditional mind-body dichotomy associated with René Descartes. It also goes against more modern but highly simplistic descriptions of the brain as a type of computer.
I think the research in embodied mind in neuroscience is only going to get better," says Arikha
In practical terms, focusing on interoception opens up the potential for new treatments. A leading figure is Prof Antonio Damasio who identified impaired interoception in certain patients with brain damage. When shown a picture of a gruesome injury, for example, they had no physiological response – normal emotions were absent.
Researchers are now exploring whether impaired interoception is a factor in a wider range of mental illnesses, and if so whether certain interventions could help. Physical exercise and meditation are two therapies showing some promise but more targeted measures are being developed.
“I think the research in embodied mind in neuroscience is only going to get better,” says Arikha. Her optimism is reflected by the fact that a quarter of her book is made of up references to academic papers and that’s only “a tiny fraction of a really rich world of research”, she says. “When I first encountered this research I thought: Wow! There are answers... they are provisional – science is always provisional – but they are there.”
‘Uphill climb’
Damasio, with whom Arikha spoke just last week at a public lecture, has being trying to get clinicians to take interoception more seriously but “it’s still an uphill climb”, she adds. “There is still a lot of work to be done to really build a solid bridge between the experimental world which is running with the idea of the embodied self, and the world of clinical medicine.” Much of this is purely down to “practitioners having to work within limited time and resources; it’s not like a neurologist can go and sit at a conference on neuroscience and vice versa – people just don’t have the time”.
Her book makes its own contribution to bridging the gap between theory and practice in part by encouraging philosophers to pay closer attention to the science but also by highlighting what philosophy has to offer. “I rather do a ‘Show, don’t tell’ in the book… to give an account of human experience.” Drawing on that branch of philosophy known as phenomenology, the study of first-hand experience, she says, “I don’t think we can exist without others… Our relational selves are what there is to be studied.”
The relationship between dementia sufferer and loved-one forms part of this analysis. Arikha finds a new type of meaning to be had from the much more limited interactions with her mother in her final years. Despite her mother’s failing capacity, occasionally “gems came out of her deepest mind”. One of them became the title of the book.
“The ceiling inside, the ceiling outside,” Arikha’s mother said one day, “sing-song and amused”.
Is there a deeper kind of wisdom that someone with dementia may have access to?
“I think so,” Arikha replies. “Her expressions – everything – was all over the place; there was no narrative continuity. But she said things that were amazing that just came out of somewhere, that just made sense – these kind of nuggets. I still quote them.”
Some were humorous, some were profound, and you would be forgiven for detecting a Beckettian quality: Arikha's mother was the poet and author Anne Atik who wrote an acclaimed memoir about Samuel Beckett having been a close friend of his in Paris.
“‘The ceiling outside’ – I just find it incredibly evocative, it just stuck there. Anybody can read anything they want into it: the infinite with the finite, the finite with the infinite; the positive and the negative, the negative and the positive. I don’t have a particular reading of it, I just think it’s very evocative and she said it. And it’s thanks to my mom that this book came together in the way it did. It is a kind of tribute to her, this book.”
The Ceiling Outside: The Science and Experience of the Disrupted Mind by Noga Arikha is published by Basic Books
