The journey of caring for loved ones with dementia can often feel isolating and disheartening. Jo Glanville’s poignant account sheds light on a powerful method for fostering connection: reading aloud. Drawing from her personal experiences with her parents, both of whom battled degenerative illnesses, Glanville illustrates how literature can serve as a vital bridge to the cognitive world of those suffering from dementia.
A Son’s Struggle with Loss and Understanding
Ian McEwan, the acclaimed novelist, has recently added his voice to the ongoing discourse surrounding assisted dying for individuals with dementia. He poignantly reflects on the experience of witnessing his mother’s decline, stating, “By the time my mother was well advanced and could not recognise anyone, she was dead. She was alive and dead all at once.” This stark description highlights the emotional turmoil that families endure while caring for loved ones who seem to be fading away mentally and emotionally.
Glanville’s mother, Pamela, succumbed to vascular dementia a decade ago, while her father, Brian Glanville, a distinguished football journalist, passed away last year after battling Parkinson’s for five years, during which he also experienced a milder form of dementia. The term “radioactive damage,” as used by McEwan, aptly encapsulates the profound effects on the mental health of caregivers, who often grapple with the duality of life and death in their loved ones’ existence.
Discovering Connection through Reading
Despite the debilitating nature of her parents’ conditions, Glanville discovered an unexpected avenue for engagement: reading. Throughout their illnesses, both parents derived joy from being read to, demonstrating that, contrary to common assumptions, their cognitive faculties were not entirely impaired.
Glanville recounts a moment of clarity when reading memoirs by Arthur Koestler to her father. Despite his silence and apparent detachment, he noticed discrepancies in the order of the stories being read. This revelation highlighted the potential for cognitive engagement that remains hidden beneath the surface of dementia’s challenges.
The same was true for her mother, who, despite her deteriorating condition, responded enthusiastically to Doris Lessing’s memoir about cats. This re-engagement with literature served as an enlightening reminder: silence does not equate to a lack of understanding.
The Broader Implications of Literary Engagement
The insights drawn from Glanville’s experiences resonate with research conducted by The Reader, a charity dedicated to the therapeutic effects of literature. Their case studies demonstrate that reading aloud can significantly enhance communication and cognitive function in individuals with dementia. Philip Davis from the University of Liverpool has noted that this practice can lead to marked improvements in well-being and a reduction in the severity of dementia symptoms.
Glanville emphasises the necessity of engagement, urging caregivers and family members never to assume that silence indicates a lack of comprehension. Even when communication appears impossible, the act of reading aloud can stimulate connections that are deeply rewarding for both the caregiver and the person living with dementia.
The Ethical Considerations of Assisted Dying
While Glanville acknowledges that there may be a point in the progression of dementia where connection becomes exceedingly difficult, she argues against the notion of assisted dying for individuals with cognitive impairments. For her, true “death” only occurs when the body ceases to function. She advocates for continued efforts to engage and communicate with those suffering from dementia, highlighting the need for advocacy in opposing assisted dying legislation that may overlook the potential for meaningful interactions at any stage of the disease.
Why it Matters
The exploration of literature as a means to connect with those afflicted by dementia is not merely a therapeutic approach; it is a lifeline of hope for families navigating the complexities of degenerative diseases. Glanville’s personal narrative serves as a powerful reminder that even in the midst of despair, there are avenues for joy, understanding, and connection. As society grapples with the ethical implications of assisted dying, it becomes increasingly essential to recognise the intrinsic value of every moment spent with our loved ones, regardless of their cognitive state. Reading aloud may not cure dementia, but it can illuminate the profound human connections that endure even in the face of profound loss.
