Six months after my mother, Pamela, was diagnosed with vascular dementia she took to her bed. It was an exceptionally cold winter, so it was a sensible place for retreat. But that’s where she remained until her death more than three years later, at the age of ninety-four. She no longer participated in life or expressed an interest in any activity. If you chose the right subjects, it was possible to have conversations about the past, where she was fluent and still kept her ironic sense of humour, but her engagement with the world and present time had come to an end.
She had been a journalist and had always described her time as a sub-editor, features and beauty editor in the fifties as the happiest time of her life. She worked for a magazine called Housewife, published by Hulton Press, whose more famous publications included Picture Post and Lilliput. She loved editing and was skilled at honing a text. She was a talented writer too, and wrote a series of children’s stories for me and my brothers and sister that I have never forgotten, about a family on the breadline who discover their fridge miraculously filled with food. She sadly never completed the autobiographical novel that she had struggled to write, which charted her traumatic early life – from a neglected childhood in Weimar Germany to her abandonment by her parents in an English boarding school, where she remained even during the school holidays.
Dementia cocooned her in a perpetual repeating loop, where she believed that she was in bed recovering from an illness, and had only been there for a few days
With dementia, the written world had vanished too: she no longer showed any desire to read or for any form of entertainment. Her short-term memory had gone, so it was likely that it would be impossible to follow a story in any case. Dementia cocooned her in a perpetual repeating loop, where she believed that she was in bed recovering from an illness, and had only been there for a few days. The delusion was perhaps a mercy: in the early days of the disease she would tell me of terrifying hallucinatory journeys that she said she would not have wished upon an enemy. Once, she vividly told me that it was like being trapped behind a gate and that no one could hear her on the other side.
One day I decided to try and read to her, as an experiment. I did not expect it to work, but for her to lose track of the narrative. To my astonishment, not only was she able to follow the story, she discussed it with me too. There was an oasis in her brain where her love of words, her critical appreciation and emotional response to literature were entirely unimpaired.
Over the next three years, every Saturday afternoon, I would sit and read to her, mostly short stories: Chekhov, Alice Munro, John Cheever, Raymond Carver, Dickens. We read all of Dickens’s Christmas stories (including The Chimes and The Cricket on the Hearth, though she thought the better known A Christmas Carol far superior). We also read Roald Dahl’s autobiographies, Stella Gibbons’s Cold Comfort Farm and Philip Larkin’s poems. The discovery transformed my time with her. Though dementia had reduced her to a child-like state in her vulnerability and need for protection, on those afternoons her intellectual capacity surpassed mine. I remember, on more than one occasion, wondering aloud about an archaic word in Dickens – she instantly responded with the meaning. She also remained highly selective in what she wanted to hear. One day I arrived with a copy of the Guardian magazine, a special short-story edition. Within minutes, she had looked at me wearily, unimpressed by the quality of the writing, and asked me to find something else to read to her.
There is great comfort and companionship in being read to and reading to someone. I remembered the captivation of her undivided attention when she had read to me as a child in her richly resonant voice, transporting me to other worlds that suspended time for the length of the story. Now that I had become the reader, taking her to places that she could not reach alone, just as she had done for me when I was unable to read, it was not so much a return to childhood, as the completion of a cycle. Though I had always feared having to care for her in her old age, to my own surprise the reversal of roles felt like the natural order of things, demanding a depth of compassion and patience that I had not known I was capable of giving her. (I should add that my father, who is ten years younger than my mother, was the main carer; my contribution was a side dish in comparison.)
How was it possible that my mother’s response to literature had survived, when dementia had ravaged the cognitive abilities necessary to lead her life?
I have since discovered that it is not an isolated incident. The Reader, a charity based in Liverpool, has been running reading groups for people living with dementia for twelve years. Kate McDonnell, head of reading excellence at the charity, told me that when she ran the first dementia reading group she had not expected it to be successful. She recalls reading a Roald Dahl story aloud first and remembers the bewilderment of a male resident, a former headmaster, who declared that it was a puzzle. She then read Robert Burns’s poem ‘My love is like a red, red rose’. ‘It was like an electric current had gone round the room,’ she says. ‘An incredible thing had happened.’ People who could not remember their own names or their children’s names were responding to the poem. One even sang it. The man who had not been able to follow the Dahl story told her: ‘The language is so simple. No verbosity.’ The Reader now runs more than fifty groups in care homes across the country.
The advantage of poetic language, of any language that is strong, is that it triggers the articulation of memories, the articulation of feelings and thought
The Centre for Research into Reading, Information and Linguistic Systems at Liverpool University published a study on the impact of reading on dementia in 2012. It demonstrated the positive impact of reading, including a significant reduction in the severity of dementia symptoms. Professor Philip Davis, director of the centre, told me that he was particularly surprised that participants in the reading groups made new responses to what they heard: it was not simply that memories were triggered by the reading, but fresh thoughts too. ‘The advantage of poetic language, of any language that is strong, is that it triggers the articulation of memories, the articulation of feelings and thought,’ he says. ‘This is a re-education because it says there’s still something that is latent. You have to be patient and you also have to produce the triggers.’
There are a number of case studies in Philip Davis’s report that give moving examples of apparently passive or inarticulate individuals with dementia who responded to literature: a man with early-onset dementia who was depressed, isolated and spoke only in monosyllables became fluent and focused after hearing Laurie Lee’s poem ‘Apples’. He then read the poem aloud, word perfect. Philip Davis describes the experience of seeing people with dementia coming back to life as ‘mini miracles’.
I asked Alexander Leff, professor of cognitive neurology at University College London, if it was possible to explain my mother’s experience and the wider examples of other people with dementia. Leff specialises in researching aphasia and alexia (the inability to speak or read as a result of brain damage) and has a particular interest in the breakdown and rehabilitation of cognition in brain injury, including strokes. In my mother’s case, he suggested that her emotional responses might still have been relatively normal: ‘If you’re reading something that grabbed her attention, she’s more likely to remember and encode it.’ It’s also possible that given her past profession and large vocabulary, she was still able to access her long-established response to language. We tend to be more resilient in areas where we are particularly skilled and our auditory perception of the world is also more robust. So while my mother, along with others with dementia, may not have been able to read herself anymore or have the cognitive capacity to express a desire to read, she still retained the ability to respond.
This is what seems to be one of the key findings of my experience and of the reading groups: with dementia, sufferers may appear to be passive and apparently vacant, but literature can provide a trigger that brings a transformative active response. Alexander Leff observes that brain damage, such as dementia, isolates you from the world. ‘If you put someone in a relatively unstimulating environment and they have got a cognitive deficit, they are not going to respond. You would do the same if I put you in a prison cell and didn’t allow much input to come to you, you would become less responsive. If you’ve lost the ability to read you’re dependent on other people bringing language to you. A lot of it is about social isolation.’
It remains astonishing that literature can elicit such a response from individuals with dementia. Reading stirs our emotions, our memory and our intellect
For some, this may be alarming. It is terrifying to think that a relative, partner or friend may be stranded within their own internal world unless someone makes a concerted attempt to communicate. It may also make us feel deeply guilty if we cannot give the time or attention to a relative with dementia or would rather give the job of their care to someone else. But with 850,000 diagnosed dementia sufferers in the UK, a figure that is rising, the possibility that they may still be able to participate and that they are not lost to us, is surely a cause for hope.
Alexander Leff points out that we all retain only an impression of what we have read. None of us can remember a book word for word, so a dementia sufferer’s enjoyment may not be so very different from a reader who does not suffer from a cognitive impairment. There are two different schools of thought about where the capacity for language resides in the brain: one sees it as a distributed network, the other as localised. Leff’s view is that both play a role. He likens the network to a tube map: if King’s Cross underground station goes out of action, there may still be another route to get from Angel to Green Park. The rehabilitation of stroke victims and survivors of brain tumours shows that the brain has the capacity to recover its cognitive ability. Little research or rehabilitation of the same kind has been done with dementia. However, Leff’s team is currently developing a therapy app for dementia in relation to the recall of proper names. He believes that it may well be possible to have a positive impact. It would not constitute a cure, but could improve some cognitive capacity.
The Reader invited me to attend a weekly reading group in Croydon, at Marsh and Willow Day Services. There were eight participants, with mild to moderate dementia, all living in their own homes, who come several times a week to take part in different activities. Sabine, who ran the group, read two poems with them: Auden’s ‘If I Could Tell You’ and Frost’s ‘The Road Not Taken’. A lively discussion followed, with much insightful commentary about the meaning of the poems. One participant, a sparky elderly man who was the most talkative member of the group, spoke about the poignancy of Frost’s poem and pointed out that although the title referred to the road not taken, the poem itself was about the road that the poet had chosen. A stylishly dressed woman, younger than the rest, said that it was her first time at the group. She had previously avoided coming because she was not a reader and did not like poetry, but she had liked the session and the poems so much she would return. Even the participants who said little were clearly enjoying themselves, smiling and responding to their companions. I enjoyed it immensely too – they were a delightful group. It reminded me of the pleasure of reading with my mother, the joy of discovering a great piece of writing in another’s company.
It remains astonishing that literature can elicit such a response from individuals with dementia. Reading stirs our emotions, our memory and our intellect. The experience of The Reader, which engages with individuals from all walks of life, should also make us drop any prejudice that the enjoyment of great literature is an elite pursuit. Philip Davis would like to see shared reading groups introduced into every dementia care setting in the UK. He quoted a line from Matthew Arnold’s poem ‘The Buried Life’ that perfectly captured the remarkable impact of reading: ‘A bolt is shot back somewhere in the breast,/ And a lost pulse of feeling stirs again’. Literary language is clearly food for the brain.