The novelist Ian McEwan recently advocated for extending assisted dying to individuals with dementia, sharing his deeply affecting experience with his mother: “By the time my mother was well advanced and could not recognise anyone, she was dead. She was alive and dead all at once. It was a terrible thing. And the burden on those closest is also part of the radioactive damage of it all.”
The Lingering Presence of Self in Dementia
Exploring how connection—even in silence—persists for those living with degenerative illnesses.
- The experience of caring for parents with dementia and Parkinson’s revealed surprising cognitive abilities remained intact.
- Reading aloud proved a powerful tool for connection, even when verbal communication was lost.
- Assuming a lack of understanding in dementia patients can lead to missed opportunities for meaningful engagement.
- Advocacy for those with dementia includes opposing assisted dying, recognizing potential for continued quality of life.
My mother, Pamela, a journalist, died of vascular dementia 10 years ago. My father, the football journalist and novelist Brian Glanville, died of Parkinson’s last year after living with the illness for five years; he also had a milder form of dementia. “Radioactive damage” is a strikingly accurate description of the impact of caring for someone with a degenerative illness, but the idea that someone in the later stages of dementia might be “dead” feels wrong, especially when I reflect on my parents.
A profound discovery during my time caring for my parents was realizing that, in some respects, their brains remained remarkably unimpaired. Both continued to enjoy being read to until the end of their lives, responding positively to stories, poems, and novels throughout their illnesses. They retained their ability to comprehend and follow narratives, and even demonstrated knowledge of obscure words. I recall one instance when reading my father memoirs by Arthur Koestler, a favorite author of his, he noticed I wasn’t reading them in chronological order—a detail I hadn’t even realized.
However, neither of them could communicate their desire for me to read to them. I discovered this by chance. My father would spend entire days sitting silently in a chair, unable to move independently or perform tasks without the help of his dedicated care worker, Molly. To an outside observer, he might have appeared “dead” to the world, seemingly vacant. But that wasn’t the case. As I observed, Parkinson’s and dementia had robbed him of the ability to initiate conversation or express his needs. It seemed a crucial “motor” in the brain, enabling connection with the outside world, had been destroyed. Only when family and Molly actively engaged him, asking questions and encouraging communication, could he begin to connect. Reading to him became a vital bridge, revealing that his sophisticated cognitive function remained largely unaffected by dementia.
I witnessed a similar process with my mother. There was a time when she seemed unable to follow a story, but then I began reading her Doris Lessing’s memoir about cats—a subject she’d always loved—and she became fully engaged once more.
As a result, I’ve learned that one should never assume silence or unresponsiveness equates to an inability to understand or engage. It’s crucial to seek ways to make a connection.
This experience isn’t unique. Case studies from the charity The Reader’s reading groups demonstrate that reading aloud can dramatically impact people living with dementia, triggering fluency and communication in response to stories and poems. An evaluation of The Reader’s work by Philip Davis at the University of Liverpool concluded that reading aloud to people with dementia significantly reduced symptom severity and contributed to overall wellbeing.
What level of cognitive function remains in individuals with dementia? Despite significant challenges, many retain the ability to comprehend and enjoy stories, poems, and familiar subjects, even when verbal communication is limited.
I recognize there may come a point, with the devastating progression of Alzheimer’s, for example, where such connection becomes impossible. For me, “death” occurs when someone physically ceases to function. People with dementia need advocates—and that includes opposing assisted dying. There are still pleasures and connections to be made, even as the world fades around them.
