Well said, Jo Glanville (Reading was the key to breaking through the fog of my parents’ dementia, 1 February). Our mother lived with vascular dementia for many years, but she wasn’t “dead” or “as good as dead”. Far too many people believe this, even people whose loved ones have had dementia, and it’s a dangerous belief that undermines the rights of people who are already extremely vulnerable.
Mum was alive and herself right to the end, even when she had become bedbound and crippled, even when somebody who could once have chatted for England barely spoke any more. But in those last few years, when she could no longer read for herself, Dad or I (or my brothers when they visited) read to her every day, and even when she didn’t say much, I could tell by the expression on her face whether she was enjoying it or not.
We read to her even in her last four days after she’d been taken to hospital when she’d choked (vascular dementia can cause dysphagia, trouble with swallowing as well as speech) and had a heart attack, and never spoke again, and even then we could still tell what she was enjoying and what she wasn’t.
In the hospital, as we had done at home, we even managed to play her some music, even though the overworked but wonderful hospital staff couldn’t get a separate room for her. And once the staff had got her painkilling medication right, she stayed peaceful right to the end. People with dementia are still people, and they deserve to be treated as people, not as some kind of zombies.
Rowan Adams
Dilwyn, Herefordshire
Jo Glanville’s insights on her parent’s enduring love of stories deep into dementia truly resonated. After his 2017 Alzheimer’s and vascular dementia diagnosis, Dad’s lifelong love of reading seemingly ceased. Instead of accepting it, I thought it would make a difference to change the format rather than the activity. I began to write short, illustrated rhyming books with optional audio with music. Exercises, based on cognitive stimulation therapy, were added to stimulate conversation.
Working with Alzheimer’s Society, unlike Glanville’s experience of shared reading, we found that people with mild to moderate dementia could still read independently, while others could enjoy stories with a partner, in groups or through audio. The results have been extraordinary. We’ve helped thousands. My father might not be able to remember breakfast, but he can recite from memory passages about the Beatles or the 1966 World Cup. And when he does, I get to tell him “I wrote that” and watch the joy and pride on his face once again.
Matt Singleton
Gerontologist and director, Cognitive Books
Jo Glanville’s sensitive piece about the power of reading to her parents, who both had forms of dementia, reminded me of the small success I had through music during lockdown, with my sister who had Alzheimer’s. As three sisters growing up, our party piece was the song Sisters, sung by the Beverley Sisters. So on FaceTime with my sister in her nursing home, I would play our song and sing along, and she, whose memory had been shot to pieces, amazingly joined in, smiling and being released for a short while from her illness. Just wonderful.
Catherine Roome
Staplehurst, Kent
What an interesting piece about the hidden thoughts and perceptions of people with dementia. When my mother was in the last stages of dementia, we both enjoyed looking through a book of photographs of Victorian children. She had been a teacher. And she liked getting letters. She had been a lifelong letter writer. Jo Glanville is right: people like this are not “dead”. The proponents of “assisted dying” deny that their bill is the thin end of the wedge – but we clearly see the wedge in the hands of the novelist Ian McEwan, who, as Glanville says, has advocated for its extension to people with dementia.
Jane Linden
Darsham, Suffolk
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