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Using narrative to convey the experience of dementia care-giving: I Know How This Ends: Stories of Dementia Care

I KNow How This Ends: Stories of Dementia Care (2020) - cover

Parables of Care is an international collaborative project that explores the potential of co-designed comics to enhance the impact of dementia care research led by Dr Ernesto Priego, Centre for Human-Computer Interaction Design, City, University of London.

Today the project has announced a new title in their research comic book series: I Know How This Ends: Stories of Dementia Care (2020). This is the second volume in a series that started with Parables of Care: Creative Responses to Dementia Care (2017).

Drawn by Peter Wilkins and Melissa Martins, edited by Ernesto Priego and designed by Simon Grennan, I Know How This Ends is a 16-page comic book resulting from collaborative narrative research and co-design sessions with participants.

The book presents, in synthesised form, stories crafted from narrative data collected via interviews with professional caregivers, educators, and staff at Douglas College in Vancouver, Canada, who have cared for relatives and people with dementia in hospital.

The previous volume employed the form of the parable to tell individual stories based in real-life cases as told by carers. As the foreword explains, this new comic is structured like a classical Greek tragedy – with a prologue, three episodes, and an epilogue –because the stories the team worked with had the elements of tragedy: inevitability, stratagems to avoid fate that merely bring it on, and catharsis of negative emotions.

The intention of the book is to show the importance of feeling in care-giving, the professional aspects of which are sometimes at odds with the family systems aspect of dementia.

As we state in the foreword, by 2030, 82 million people are anticipated to have dementia and 152 million by 2050. With this project we aim to continue making a contribution to widen the dissemination of one of the key challenges of our time, following user-centred design and narrative research design methods.

I Know How This Ends: Stories of Dementia Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

As this is a publication made for print please note the PDF file is 130MB; mobile users might prefer to download it and view it from a laptop or desktop.

The free print version of the comic will be available soon and you can request free copies via this form.

We look forward to hearing what you think.

This post was originally published at the Parables of Care project blog: https://blogs.city.ac.uk/parablesofcare/2020/02/12/i-know-how-this-ends-stories-of-dementia-care/

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Launching the Interaction Lab Podcast!

From the dementia care comic "I Know How This Ends", art by Peter Wilkins.

From the dementia care comic “I Know How This Ends”, art by Peter Wilkins.

We are pleased to launch our City Interaction Lab Podcast!

Brought to you by City Interaction Lab and the Centre for Human-Computer Interaction Design at City, University of London, the City Interaction Lab Podcast will be a series of thought-provoking design-focused audio episodes featuring interviews and opinions hosted by Stuart and Ernesto.

In this inaugural episode of the City Interaction Lab podcast Stuart and Ernesto talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).

Our guests discuss their work co-designing the comics ‘Parables of Care‘ and ‘I Know How This Ends’ centred on dementia care. These complementary issues shine the light on those living with dementia and their carers.

If you are interested in how comics can be incorporated into your design practice then this is one not to miss!

Apologies for the audio levels, we’ll do better next episode!

Opening track: The Learning Experience, courtesy of Martin Eve. © Martin Eve.

The original audio file of the podcast has also been deposited in City Figshare.

Citation:

Priego, Ernesto; Scott, Stuart; Wilkins, Peter; Grennan, Simon (2019): City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics – Parables of Care. City, University of London. Media. https://doi.org/10.25383/city.11347799.v1

More on Parables of Care

 

Parables of Care explores the potential of comics to enhance the impact of dementia care research.

The 16-page publication presents in comics form true stories of creative responses to dementia care, as told by carers, adapted from a group of over 100 case studies available at http://carenshare.city.ac.uk.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

If you work in a library, hospital, GP practice or care home- or care for someone with dementia in the UK, you can order a free copy of Parables of Care here: in the UK you can request printed copies at no cost here.