Individuals living with dementia are still individuals, possessing their own joys and interests.
It’s a powerful statement by Jo Glanville, as she reflects on how reading was pivotal in navigating the challenges posed by her parents’ dementia (February 1, The Guardian). My own mother battled vascular dementia for many years, yet she was never "gone" or "as good as dead." Unfortunately, this misconception is widespread, even among those who have had loved ones affected by dementia. This belief is not only erroneous but also harmful, as it diminishes the dignity and rights of those who are already in a vulnerable state.
My mother remained vibrant and very much herself until the very end. Even when she became bedridden and physically limited, and her ability to engage in conversation diminished dramatically, she retained her essence. During those later years, when she could no longer read independently, my father or I—along with my brothers during their visits—would read to her every day. Despite her reduced verbal communication, it was evident from her facial expressions whether she was enjoying the stories we shared.
Even in her final days at the hospital, after suffering from choking—a complication of her vascular dementia that affected her swallowing—and experiencing a heart attack, we continued to read to her. Though she never spoke again, we could still gauge her enjoyment through her reactions.
In the hospital setting, we managed to play her favorite music, despite the challenges presented by the busy staff who were doing their best. Once her pain management was properly addressed, she remained calm and comfortable right until the end. It’s crucial to reiterate that individuals with dementia are still individuals deserving of respect and care; they should never be viewed as mere shadows of their former selves.
In a similar vein, Jo Glanville’s reflections on the enduring love for stories displayed by her parents deeply struck a chord with me. After my father received his diagnosis of Alzheimer’s and vascular dementia in 2017, it seemed that his lifelong passion for reading had abruptly ended. Instead of resigning myself to this notion, I decided to adapt the format of how we engaged with literature rather than abandoning it altogether. I began creating short, illustrated rhyming books accompanied by optional musical audio, integrating exercises based on cognitive stimulation therapy to spark conversations.
Collaborating with the Alzheimer’s Society, we discovered that individuals with mild to moderate dementia could still read independently, while others thrived in group settings or through audio storytelling. The outcomes have been remarkable, positively affecting thousands of lives. Although my father may struggle to recall what he had for breakfast, he can recite passages about the Beatles or the 1966 World Cup with clarity. When he does, I take joy in telling him, "I wrote that," and witnessing the delight and pride illuminate his face once again.
Jo Glanville’s poignant article about the impact of reading on her parents, both of whom experienced dementia, reminds me of a small triumph I had using music during the lockdown with my sister who has Alzheimer’s. Growing up together, our go-to performance was the song "Sisters" by the Beverley Sisters. During FaceTime calls with my sister in her nursing home, I would play our song and sing along. To my amazement, despite her memory challenges, she joined in, smiling and momentarily escaping the confines of her illness. That was truly a wonderful experience.
This discussion sheds light on the often-overlooked thoughts and feelings of those with dementia. In the later stages of my mother’s condition, we found comfort in exploring a photo book of Victorian children together. As a former teacher, she cherished such activities. She also had a deep love for letter writing, having been an avid correspondent throughout her life. Jo Glanville is absolutely correct: individuals like these are not "dead."
There are advocates for "assisted dying" who fail to recognize that their proposals may lead to broader implications. This concern is starkly highlighted by novelist Ian McEwan, who, as Glanville points out, has called for the extension of assisted dying rights to include those suffering from dementia.
What are your thoughts on this sensitive topic? Do you believe the rights of individuals with dementia are adequately protected? How do you see the intersection of care and autonomy in such cases? I invite you to share your opinions in the comments.
