Individuals diagnosed with dementia are still very much individuals, possessing their own joys and interests.
Jo Glanville captures this sentiment perfectly in her thoughtful piece, "Reading was the key to breaking through the fog of my parents’ dementia" (February 1). Our mother battled vascular dementia for many years, yet she was neither "dead" nor "as good as dead." This misconception is far too prevalent, even among those who have witnessed the struggles of loved ones with dementia, and it poses a serious threat to the rights of those who are already in a vulnerable state.
My mother retained her essence right up until her final moments. Despite becoming bedridden and severely compromised in her abilities, she remained alive in spirit. Even when her speech diminished significantly—once a lively conversationalist—she still had a light within her. In the last years of her life, when she could no longer enjoy reading on her own, either my father or I (or my brothers during their visits) would read to her daily. Remarkably, even in her silence, the expressions on her face communicated whether she was engaged and enjoying the story or not.
We continued this routine even during her last four days at the hospital, following a choking incident caused by her condition (vascular dementia can lead to difficulties with swallowing known as dysphagia, in addition to affecting speech) and a heart attack that left her unable to communicate again. Yet, we still sensed her preferences through her reactions to the stories we shared.
In the hospital setting, replicating our home environment, we played her favorite music, despite the busy nature of the staff who were unable to provide her with a private room. Once her pain management was properly adjusted, she experienced peace until the end. It’s essential to remember that people living with dementia remain human; they deserve to be treated as such, rather than being viewed as mere shells of their former selves.
Rowan Adams
Dilwyn, Herefordshire
Jo Glanville’s reflections on the ongoing love for storytelling in her parents’ lives, even amidst dementia, struck a chord with me. After my dad received a diagnosis of Alzheimer’s and vascular dementia in 2017, his passion for reading seemed to fade away. Instead of resigning myself to this change, I decided to adapt the way we approached reading. I began crafting short, illustrated rhyming books that came with optional audio featuring music. To further encourage conversation, I incorporated exercises rooted in cognitive stimulation therapy.
Collaborating with the Alzheimer’s Society, we discovered something remarkable. Unlike Glanville’s experiences, our findings showed that individuals with mild to moderate dementia could still engage in reading independently, while others enjoyed stories alongside a partner, in group settings, or through audio formats. The outcomes have been extraordinary; we have positively impacted the lives of thousands. My father might forget what he had for breakfast, but he can vividly recite passages about the Beatles or the 1966 World Cup from memory. Hearing him do so allows me to share, "I wrote that," and witness the joy and pride return to his face.
Matt Singleton
Gerontologist and Director, Cognitive Books
Jo Glanville’s poignant article about the transformative power of reading for her parents, both of whom experienced dementia, reminded me of a small breakthrough I achieved through music during lockdown with my sister, who has Alzheimer’s. Growing up, the three of us sisters cherished singing the song "Sisters," originally performed by the Beverley Sisters. During FaceTime calls with my sister in her nursing home, I played our song and sang along. To my amazement, despite her memory challenges, she joined in, smiling and momentarily escaping her illness. It was truly magical.
Catherine Roome
Staplehurst, Kent
What a fascinating discussion about the often-overlooked thoughts and feelings of individuals living with dementia. When my mother reached the late stages of her illness, we found joy in exploring a book filled with photographs of Victorian children. As a former teacher, she took pleasure in reminiscing about her past. Throughout her life, she was also an avid letter writer. Jo Glanville is correct: individuals like my mother are far from "dead." Advocates for "assisted dying" may insist that their proposals do not signify a slippery slope—but we can clearly see the potential for such implications, as highlighted by novelist Ian McEwan’s recent calls for extending these rights to dementia patients, as Glanville mentions.
Jane Linden
Darsham, Suffolk
What are your thoughts? Do you believe society’s perception of those with dementia needs to change? Let’s discuss!
