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

I Know How This Ends cover (2020)

Today I announced the release of a new output in the Parables of Care 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, designed by Simon Grennan and edited by Yours Truly,  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.

[Personal warning: where Parables of Care was a tender, sympathetic and even funny collection of practical strategies,  I Know How This Ends may prove a tougher, darker read. As Peter Wilkins put it in a message to the team, “all of the interviews were about incredible weight, abandonment and suffering”. A someone whose late father had dementia I can relate to such feelings around the care-giving experience, and I Know How This Ends indeed does attempt to represent and interpret the experiences of the care-givers the project team talked to. We believe there is no way to make up the stark reality of dementia, its difficulty and emotional intensity. It would be unethical to do so. Some readers may be disappointed not to find more hopeful optimism in the book. In I Know How This Ends stories are being told and shared, and feeling and emotion, however difficult, are being channeled and processed. I see in this act of storytelling a significant source of hope. Personally I hope the book helps communicate the problematic and painful intensity of the experience of care-giving, saying to those that might be struggling that they are not alone].

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.

My gratitude to all the members of team, as well as other colleagues, friends and family members whose direct and indirect support throughout the development of this phase of the project was essential and is sincerely appreciated.

For a list of credits and thank you’s please look inside the book. ;-)

We look forward to hearing what you think.

Podcasting for Research Dissemination: Launching the City Interaction Lab Podcast

Panel by Peter Wilkins, from I Know How This Ends
Panel by Peter Wilkins, from I Know How This Ends

City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics 

Earlier this week we launched the City Interaction Lab Podcast with an inaugural episode where we talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).

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 Scott and myself.

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

We are aware of the issues with audio levels in this episode; we’ll do better next time!

Our gratitude to Professor Martin Eve for allowing us to use his track The Learning Experience as our podcast theme track.

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.

From the original post at https://blogs.city.ac.uk/hcidcomicsgames/2019/12/09/launching-the-interaction-lab-podcast/