I was recommended this book shortly after having also been recommended another book about dementia in hospital, Wandering the Wards: An Ethnography of Hospital Care and its Consequences for People with Living with Dementia, by Katie Featherstone and Andy Northcott. The book, published by Routledge, is freely available in e-book form. Drawing on five years of research embedded in acute wards in the UK, the authors follow people living with dementia through their admission, shadowing hospital staff as they interact with them during and across shifts. It provides an almost unrelentingly grim picture of the organisation and delivery of routine care and everyday interactions at the bedside, which reveal the powerful continuities and durability of ward cultures of care and their impacts on people living with dementia. Much of the grimness stems from watching, vicariously hard-pressed and caring staff only just keeping the system together through routines, how singularly ill-suited those routines often are (and the staff know that they are) to the individual needs of those with dementia, and how little space or time there is to respond to the patients’ voices.
Reading Words to Remember by the Revd Phil Sharkey was made all the more powerful against this backdrop. This short book, available from the Addenbrooks Charitable Trust website (cost £10; the profits going to the Trust) is a remarkable work, not least because it shows what happens when time can be carved out. The Reverend Phil Sharkey is Chaplain at Addenbrooke’s Hospital, and led a reminiscence project, funded by a grant from the Royal Voluntary Service, to use poetry to facilitate memory recall amongst those patients living with dementia. As the author explains, “[a]s the project developed and I was given words by the patients in response to poetic stimulus and conversations, I began to realise that the fractured sentences, and sometimes newly coined expressions, were becoming their poetic response to the situation and reflected, in a non-linear form, their effort to communicate to me, who they were, and what was important to them. Loss, despair, loneliness and confusion were common themes, but laughter, love and fun also shone through.” The second stage of the project was to have been to train chaplaincy volunteers to take the work further, but COVID then hit. Returning to the poems from the patients, Sharkey was then moved to write his own poems “back” to them as a creative, spiritual response. On each page, therefore, the patient’s own poem first appears (including, where relevant, the supporting ‘editorial’ information required where the words needed to be amplified by actions), mirrored by the author’s own response. The third element to the book are a number of powerful, and above all intensely personal stitched drawings images by Georgie Meadows.
If the (sometimes unquestioned) reality of hospital care for those with dementia may all too often that portrayed by Featherstone and Northcott, the attentiveness to the individual voice (even at or beyond the words) of Sharkey provides at least some light to the shade, and inspiration to aim for.