Winston’s World – Exploring dementia home care through illustrative storytelling

Winston’s World is a beautifully illustrated graphic novel created by Professor Justine Schneider, from a research-informed narrative and award-winning cartoonist Tony Husband.

The illustrative story contains five chapters and is an account of what ‘good’ home care for people with dementia looks like and the challenges they may face, whilst still showing there is room for improvement. Each chapter narrates an episode in everyday life from the perspective of a cat named Winston, whose person, Freda, has dementia. The stories will appear recognisable to anyone who lives or works with anyone with dementia and can be used along with the Winston’s World training manual for training home care personnel.

Winston’s World is based on research carried out by experts at the Institute of Mental Health. Over 10 months in 2016-2017, two researchers worked as home carers in six households where someone with dementia needed support. Professor Schneider and Dr Kristian Pollock, from the University’s School of Health Sciences, interviewed the workers and relatives and took advice from home care workers and trainers about how to portray the character Daisy (the home care worker).

Professor Schneider said: “We wanted to reflect the things we learned from our research without losing the sense of drama in the everyday that makes home care so fascinating. This is why we got together and developed the characters you meet in this book.

“Daisy, Freda, Jim, Janet, Andrew, Brutus and Winston are all fictional, but the scenarios here are typical in many ways.”

 

Research based podcast

The study has also led to a podcast, based on diaries kept by professional home carers, which was written and produced by Elspeth Penny.

‘Three brains, two bodies, one secret plan; an absurd journey into the invisible world of carers and dementia.’ Giving an insight in the world of home care, highlighting to relationship between the cared-for and the carer.

See below options to access Winston’s World:

 

For further information about Prof Justine Schneider’s dementia research, read the following published journals:

  • Pollock K, Wilkinson S, Perry Young L, Turner N & Schneider J. (2020) What do family caregivers want from domiciliary care for relatives living with dementia: a qualitative study.  Ageing & Society. 41(9), 2060-2073. https://doi.org/10.1017/S0144686X20000185​
  • Turner N, Schneider J, Pollock K, Travers C, Perry-Young L, & Wilkinson S. (2019). Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers. Dementia. https://doi.org/10.1177/1471301218817616​
  • Schneider J, Pollock K, Wilkinson S, Perry-Young L, Travers C & Turner N. (2018) The subjective world of home care workers in dementia: an 'order of worth' analysis. Home Health Care Services Quarterly, 38 (2) 96-109. https://doi.org/10.1080/01621424.2019.1578715