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: whereParables of Care was a tender, sympathetic and even funny collection of practical strategies, I Know How This Endsmay 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.
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.
A smaller version, (80MB) hopefully better for mobile devices, now downloadable from Humanities Commons CORE: http://dx.doi.org/10.17613/066v-3w30
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. ;-)
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!
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 Careexplores 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.
I am pleased to (slightly belatedly) announce on this blog that our multidisciplinary panel discussing Parables of Care will feature in the programme of the Graphic Medicine 2019 international conference in Brighton, UK.
Our panel will feature team members from the UK and Canada components of the Parables of Care project.
The title of the conference this year is Queerying Graphic Medicine – Paradigms, Power and Practices and will take place 11-13 July 2019 in Brighton, UK.
I talked about Parables of Care, about the power of storytelling and superheroes, my comic and real-world heroes, etc. It’s quick!
Story Of Books is a journal published by GLUE Studio. It is about an object we love above all else, the book. Their focus is on the making of compelling storytelling and the making of the book.
Story Of Books began life as a Twitter hashtag for their London Design Festival 2011 event, “Whatever is to become of books?”
The HCID Open Day 2018 is a mini conference on Friday 4th May run by the Centre for Human Computer Interaction Design (HCID) at City, University of London.
The theme for this year will be ‘Beyond the Screen’ and will focus on designing non screen based interactions, exploring technology that has made the jump from science fiction into reality and how UX thinking can be used for more than just interfaces.
Recent research has explored the use of collaborative art practice as a Human-Computer Interaction methodology (Kang et al 2014 and 2018; Benford et al 2013; Brynjarsdyttir et al 2013). In this talk I will describe how the Parables of Care project is employing collaborative comics-making as a user-centred methodology as a means to collect and disseminate data, reflect, design and propose strategies for dementia care.
I worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleagues from HCID, leading the team to produce Parables of Care, that uses comics as a medium to evoke the kind of de-structured and re-structured experience of time that is akin to dementia, to illness, ageing and caring.
Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.
If you live in the UK you can request printed copies at no cost here.
Location: City, University of London, Room A130, College Building Entrance (Map)
This panel brings together service users, health care professionals and artists who are working to support those with dementia to create narratives of self. Faced with challenges to a sense of ‘who you are’, and ‘who you might become’, our panellists explore how such concepts might be adapted or preserved through the process of storytelling. This session is open to anyone who is either working in this area, caring for someone with dementia or living with the illness themselves.
The Panelists
Clare Allan (chair) lectures in creative writing at City, University of London. A former service user, she has written extensively on matters relating to mental health. Her novel, Poppy Shakespeare, a satire on mental health services, was short-listed for numerous awards, including Mind Book of the Year, the Guardian First Book Award and the Orange Prize for new writers. She writes a column for The Guardian on issues concerning mental health, which has been running since 2006.
Tracey Shorthouse, aged 48, is diagnosed with Posterior Cortical Atrophy and Early Onset of Alzheimer’s Disease. A retired community staff nurse, she is the author of I Am Still Me, a poetry collection and is involved with a variety of dementia projects and organisations such as Dementia UK’s Lived Experience Advisory Panel (LEAP), Dementia Action Alliances (DAA), the Dementia Engagement and Empowerment Project (DEEP) and The Angela Project.
Toby Williamson is an independent consultant working in the fields of adult and older people’s mental health, dementia, mental capacity, and safeguarding. He has many years’ experience of working in and managing frontline mental health services, research, evaluation, practice and service development, and policy work, and for the last ten years has particularly focused on dementia and the Mental Capacity Act. Toby has co-authored a book on mental health and mental capacity legislation and is currently co-authoring a book on rights, values and dementia.
Susanna Howard is a writer, actor and theatre maker who founded and runs the arts, literature & dementia charity Living Words. Living Words run care home residency programmes working one-to-one with people experiencing dementias and the staff who work with them. Susanna is currently Visiting Research Fellow at Roehampton University Poetry Centre.
Ernesto Priego is a lecturer at the Centre for Human-Computer Interaction Design at City, University of London and the Editor of The Comics Grid: Journal of Comics Scholarship. Ernesto has worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleagues from HCID, leading the team to produce Parables of Care, that uses comics as a medium to evoke the kind of de-structured and re-structured experience of time that is akin to dementia, to illness, ageing and caring. If you live in the UK you can request printed copies at no cost here.
The panel will be followed by a reception for all guests.
Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.
If you live in the UK you can request printed copies at no cost here.
Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.
Recently Abi asked me some questions about working on Parables of Care for the project’s blog. I have copied and pasted the original post below.
Ernesto worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleages from HCID, leading the team to produce Parables of Care.
I asked Ernesto some questions about working on Parables of Care.
As a speech and language therapist researcher, I work with people who have aphasia and may have difficulty in reading large amounts of written text. People with dementia can experience similar challenges. What do you think the comics format offers that other mediums might not?
Ernesto Priego: My view is that comics are a unique medium because they often rely on a unique, complementary combination of writing, still graphic images and other components of visual communication. There are, of course, comics that are very wordy—they employ a lot (and I mean a lot) of written text. And there are, of course, comics that include almost no text at all (titles, indicia, series names are also written text). Unlike animation, video, TV or cinema, most comics, particularly printed ones, allow users / readers to linger on the comics page. Comics are therefore, in their own way, a very ‘mindful’ medium, as they often rely on a type of hyper awareness of concrete and abstract constraints, of context.
In most comics, time passes through different vehicles so to speak: through the time of the written text, the time represented through layout (panel size and arrangement and the placement of characters, backgrounds, props, narrative components), the time represented through panels in sequence and the gap between them, and the time it takes each reader to read or navigate the comic itself. So comics are a very complex medium indeed, but at the same time they give users a freedom to linger and to interpret information in a way that synchronic media such as music, video, TV or film do not allow them to.
Rather than just a question of comics being able to present ideas without the need for many words, in this case we think of comics as a medium that can actually evoke the kind of de-structured and re-structured experience of time that is akin to dementia but also to illness, ageing and caring in general (Paco Roca’s Wrinkles does this very well).
In many cases, people with dementia, as well as their carers, experience a time which is ‘out of joint’ (Hamlet, that tragic hero…). The fragmentary yet sequential structure of the comics in Parables of Care seeks to communicate and empathise with this experience, and in this way it attempts to share a way of experiencing the world.
I’m more familiar with comics being used to tell stories of superheroes. How areCare’N’Share stories similar and/or different to these more traditional comics narratives?
EP: That’s a very good question. For many people the term ‘comics’ means ‘superheroes’. Comics are much more than superheroes but in the case of the Care’N’Share stories the analogy achieves the status of poetic justice. Peter said in the previous Q&A that the Care’N’Share caregiver-storytellers are poets. This is true. Your question makes me think that they are similar to Romantic poets, and in this sense to heroes. Caregiving is heroic because it is a journey, and the hero’s journey is both motivated and defined by a sense of ethics, a thirst for justice and order, and fate or destiny. I also think people with dementia are poets: they see the world in a way that forces the carer and other people to realign their way of seeing things. Like the poet, they often see things that others don’t. The carer is a poet-hero because they need to learn to interpret that poetry and engage in creative endeavour themselves.
The best superhero comics, in my mind, are not about invincible heroes but about vulnerable folk that are somewhat different: their ‘superpowers’ lie in their difference and in their ability to find solutions to problems for the betterment of their communities. (Think of Peter Parker, for example). There is a lot of doubt, anxiety and pain in the hero’s journey.
The caregiver-storytellers of Care’N’Share however do not see themselves as heroes, but what they do is heroic, it requires a sacrifice and a determination that is only possible when our deepest fears are defeated and our inner super powers come to the fore. I have the uttermost respect for dementia carers/caregivers. The stories they share are lessons to us all on our duty to our fellow human beings on how to empathise with what is often completely incomprehensible and find solutions that are respectful, loving and fair.
So it’s important to say that to me the beauty of ‘Graphic Medicine’ is that it’s not about idealisation or about fitting into generic narrative structures and archetypes. It’s about the personal journey, the vulnerabilities that make us human, and discovering the ways in which we can overcome serious challenges.
What have you learnt about dementia through your experience in creating Parables of Care?
EP: I am still learning a lot. The statistics alone provide sufficient evidence that dementia is one of the key public health and social challenges of today, not just in the UK but around the world. Working in this project required having an open mind about what we could achieve and be willing to accept that our contribution would be relativelly small but potentially impactful on some level.
To come back to my previous answer I think all of us working in the project learnt that a lot is achievable in terms of health care of incurable conditions if there is tolerance, empathy, creativity and imagination. In general working in adapting the stories forced us to attempt walking in the carers’ shoes. Susan Sontag wrote a beautiful book discussing the im-possibility of experiencing the pain of others through photography. I hope Parables of Care can contribute to share the experience of dementia care in a respectful and sensitive way.
Where else might comics be applied in healthcare? Where do you want to go next?
EP: Ah, that is the question! Short answer: almost everywhere. We believe that comics can be brilliant health information resources. And I think that Health Informatics and Graphic Medicine are a match made in heaven. We are already working on that next step. I am definitely interested in developing more work that explicitly connects the dots between graphic narrative and User-Centred Design and Interaction Design. I won’t say more for the time being. Watch this space!
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Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.
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Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.
If you live in the UK you can request printed copies at no cost here.
