By: Dr Karen Harrison Dening.
Dr Karen Harrison Dening is Head of Research & Publications at Dementia UK. She is also Honorary Assistant Professor, School of Health & Life Sciences, University of Nottingham, Honorary Professor of Dementia Care Research, De Montfort University and Honorary Research Fellow, Health Services Research Department, University of Liverpool.
A significant aspect of the work of Dementia UK is in increasing the general public’s understanding of the experience of what it is like to live with dementia, whether this is from the perspective of the person with the diagnosis, their family carer or health and social care professionals. Achieving a high level of understanding is often crucial to the provision of high-quality dementia care. In the UK, over 200,000 new cases of dementia are reported each year (Matthews et al 2016), however, the nature of dementia often makes it difficult for many to understand what it may be like to actually live with dementia.
A real positive in working for a dementia charity is that we are asked to offer our opinions and commentary on a range of literary products on dementia. Now I love a good story and reading novels is one of my greatest pleasures so when the charity is asked to comment on a play script or a novel that explores some aspect of living with dementia I jump at the chance. I have read some good (and bad) scripts and novels and met some amazing authors, illustrators and actors in doing so.
One of the more recent requests was seeking our recommendations for fiction that explores the dementia experience for National Book Day. Internationally the novel is celebrated in many ways from prizes and awards for authors to days, such as National Book Day, to encourage those of all ages to read more. Another example is World Book Day (2020) which was held in March of this year with its theme being to encourage us to ‘share a million stories’ across the UK. I am not sure how successful the day was, but this set me thinking; how many novels are sold each year? I found a website of a book sales monitor (Nielsen BookScan 2020) that claims to provide statistics for the print book market in the UK. In total, they claim that 190.9 million books were sold in the UK in 2018. It is less clear as to how many of these were fiction and even less clear on the numbers that relate to dementia in any way – very few is probably the answer to that.
There is a growing recognition that the arts can complement healthcare, and that creative arts initiatives can help people connect with their fellow human beings as an effective way of supporting mental health and wellbeing (Bladen 2019). Novels can challenge our perspectives on the human experience of dementia in ways unmatched by other media. In a world dominated by technology, reading a novel encourages us to silence the noise and enter another world. Reading fiction (or non-fiction) can be a great way to increase our understanding and empathy of the human condition in its many forms. Bladen explores how the novel can be used to evidence the experience of dementia and discusses several well-known novels to illustrate the power of storytelling, such as Still Alice (Genova 2015) and The Wilderness (Harvey 2010).
In general, novels that afford some focus on the lived experience of dementia often do so as witnessed by the relatives and friends of the person with the diagnosis, whether that be from observing and suspecting something is ‘not quite right’ (Genova 2015) to an exploration of how relationships can alter as a result of dementia (Healy 2014). Very few are narrated in the first person. What is of greater interest to me is that, despite extensive searches I have found no novels that explore the experience of dementia that also involves another species, for example, in the form of a family pet.
However, if we look to the literature on psychosocial interventions, Animal Assisted Therapy (AAT) is a recognised intervention in dementia care based on the interaction between patients and animals. AAT, and Dog Assisted Therapy in particular, has been proposed to help adults with dementia in the management of their distress behaviours (Zafra-Tanaka et al. 2019). Wesenberg et al. (2019) found people with dementia exposed to an AAT intervention experienced significantly longer and more frequent periods of pleasure and positive social interaction. Is this really surprising? Many people, before they develop dementia, have long and satisfying relationships with animals. It is often the advent of dementia that affects their continued enjoyment of these relationships. For example, if it is deemed the person with dementia requires institutional care their beloved pet may not be allowed to make that transition with them. This is often seen as a transitory sadness (or sometimes an inconvenience in respect of finding a home for the animal) on the part of health and social care providers but for the person with dementia this may be akin to losing a child, a loved one.
So where am I going with this? I recently read a book that was translated into English from an Italian author. Whilst short term memory was a factor in the presentation of the protagonist, this was not a picture of dementia but of mental ill health and solitude. However, the strand that ran through the novel was the relationship the main character built with a stray dog and the dialogue (yes, a two-way dialogue) that passed between them (Morandini 2015). If the care and research world reduces the loving relationship a person living with dementia has with an animal to ‘an intervention’, then perhaps this is a topic that could be better explored in the world of literature? If literature is a means of enhancing the readers’ understanding and empathy of the experiences of others, then could this work by telling the story of a person with dementia and their pet?
Bladon, H. (2019) Using fiction to increase empathy and understanding in dementia care. Nursing Times. [online]; 115(12): 47-49. https://www.nursingtimes.net/clinical-archive/dementia/using-fiction-to-increase-empathy-and-understanding-in-dementia-care-25-11-2019/
Genova. L, (2015) Still Alice. London: Simon and Schuster.
Harvey, S. (2010) The Wilderness. New York, NY: Anchor Books.
Healey, E. (2014) Elizabeth is Missing. London: HarperCollins.
Matthews, F.E. et al. (2016) A two-decade dementia incidence comparison from the Cognitive Function and Ageing Studies I and II. Nature Communications. 7: 11398.
Morandini, C. (2015) (Translated by Ockenden, J. 2019) Snow, Dog, Foot. London: Peirene.
Nielsen Books (2020) Available on-line: https://nielsenbook.co.uk/about/ [Accessed: 7 September 2020].
Wesenberg, S., Mueller, C., Nestmann, F. & Holthoff-Detto, V. (2019) Effects of an animal-assisted intervention on social behaviour, emotions, and behavioural and psychological symptoms in nursing home residents with dementia. Psychogeriatrics. 19(3):219-227. doi: 10.1111/psyg.12385.
World Book Day (2020) Available on-line: https://www.worldbookday.com/2019/09/world-book-day-2020-launch/ [Accessed: 7 September 2020].
Zafra-Tanaka, J.H., Pacheco-Barrios, K., Tellez, W.A. & Taype-Rondan, A. (2019) Effects of dog-assisted therapy in adults with dementia: a systematic review and meta-analysis. BMC Psychiatry. 19: 41. doi: 10.1186/s12888-018-2009-z