Reading was the key to breaking through the fog of my parents' dementia | Jo Glanville

"Radioactive damage is certainly a vivid description of the impact of caring for someone living with a degenerative illness, but the perception that someone in the last stages of dementia may be dead feels wrong when I think of my parents. How are you to know what is happening in someone else's brain? A great revelation for me in caring for my parents was a discovery I made through reading to them that in some respects, their brains were unimpaired."

"Both continued to enjoy being read to until the end of their lives. They responded positively to hearing stories, poems and novels throughout their illnesses. They retained their ability to comprehend and follow a story, as well as their knowledge of the meaning of obscure words. On one memorable occasion, when I was reading my father a series of memoirs by Arthur Koestler, one of his favourite writers, he noticed that I wasn't reading them chronologically."

"I hadn't even realised. However, neither of them were able to communicate that they wanted me to read to them. I only discovered this by accident. My father would spend all day sitting silently in a chair, unable to move without assistance or do anything without the help of his devoted, professional care worker, Molly. To a casual visitor, he would appear to be dead to the world, apparently vacant."

Advocacy for extending assisted dying to people with dementia is grounded in accounts of profound distress and caregiver burden from degenerative illness. Advanced dementia can create the outward appearance that a person is ‘dead’ to the world while some cognitive and emotional capacities remain. Reading aloud can reveal preserved comprehension, enjoyment of stories and poetry, and retained vocabulary even when patients cannot communicate preferences. Some patients remain physically immobile and dependent yet demonstrate moments of recognition. Continuous support from family and professional carers imposes heavy emotional and practical tolls described as ‘radioactive damage.’

Read at www.theguardian.com