Dementia & Connection: Reading, Music & Maintaining Dignity
The enduring power of connection and stimulation for individuals living with dementia has been highlighted by recent personal accounts, challenging perceptions of quality of life and advocating for continued engagement even in advanced stages of the condition. These experiences underscore the importance of recognising the personhood of those with dementia and adapting approaches to maintain meaningful interaction.
Maintaining Connection in the Face of Dementia
Rowan Adams, from Dilwyn, Herefordshire, shared a poignant experience with her mother, who lived with vascular dementia for many years. Adams emphasized that her mother remained “alive and herself” throughout her illness, even as physical abilities declined and speech became limited. Reading aloud to her mother continued to provide a connection, with Adams able to gauge her enjoyment through facial expressions even when verbal responses ceased. This continued even during her mother’s final days in the hospital after choking and experiencing a heart attack.
Another account, from Matt Singleton, a gerontologist and director of Cognitive Books, detailed a different approach. After his father’s 2017 diagnosis of Alzheimer’s and vascular dementia, Singleton observed a decline in his father’s reading habits. Rather than abandoning the activity, he created short, illustrated rhyming books with audio and cognitive exercises. Working with the Alzheimer’s Society, Singleton found that individuals with mild to moderate dementia could still benefit from reading, either independently or with a partner, and that his approach had helped thousands.
The Power of Familiarity
The importance of personalized engagement was further illustrated by Catherine Roome, from Staplehurst, Kent. During lockdown, Roome used music – specifically the song “Sisters” by the Beverley Sisters, a childhood favorite shared with her sister – to connect with her sister who had Alzheimer’s. Remarkably, her sister joined in singing, demonstrating a temporary release from the effects of the illness.
Jane Linden, from Darsham, Suffolk, connected these experiences to broader ethical considerations, noting that recognising the continued personhood of individuals with dementia is crucial in debates surrounding assisted dying. She referenced novelist Ian McEwan’s advocacy for extending assisted dying rights to those with dementia, arguing that such proposals risk devaluing the lives of people living with the condition.
Frequently Asked Questions
What did Rowan Adams do for her mother?
Rowan Adams and her family read to her mother every day, even after she became bedbound and lost much of her ability to speak. They continued this practice even in the hospital during her final days.
How did Matt Singleton adapt reading for his father?
Matt Singleton created short, illustrated rhyming books with audio and cognitive exercises to stimulate conversation, recognising his father’s declining ability to read traditional texts.
What role did music play in Catherine Roome’s experience?
Catherine Roome used a familiar song from her childhood, “Sisters” by the Beverley Sisters, to connect with her sister who had Alzheimer’s, and her sister was able to join in singing.
What impact might these approaches have on the future of dementia care?