Co-designing with people living with dementia

A diagnosis of dementia used to mean staying home and being cared for. Those who work in the area of dementia are doing their best to change this view. But is the design community prepared to embrace people living with dementia? Paul Rogers reports in Co-designing with people living with dementia disruptive design interventions to break the cycle of well-formed opinions and mindsets. The co-design method has provided ways for people with dementia to continue contributing to society and have fulfilling lives.

The co-design project was to create a new tartan design. Each person with dementia directed the researcher to co-create their digital design one colour at a time.

A tartan from the research paper with orange and green colouring. Co-designing with people with dementia.

The paper describes the process in detail. The Disrupting Dementia tartan project shows how co-design methods and tools can enable people living with dementia to make a significant contribution to society after diagnosis. Although dementia changes some aspects of a person, it does not affect their sense of self. Projects such as these not only inform designers, they also give a sense of inclusion and belonging to people with dementia.

From the abstract

This paper illustrates methods for co-designing with people living with dementia in developing a mass-produced product. The research was carried out in collaboration with Alzheimer Scotland using a range of disruptive design interventions. The aim was to break the cycle of we-formed opinions, mindsets, and ways-of-doing that remain unchallenged. The research has resulted in co-designed interventions to help change the perception of dementia.

People living with dementia can offer much to UK society after diagnosis. Co-designed activities and interventions help reconnect people recently diagnosed with dementia to help build their self-esteem, identity and dignity. Co-design processes help keep people with dementia connected to their community, thus delaying the need for formal support,

We worked collaboratively with over 130 people with dementia across Scotland in the co-design and development of a new tartan. The paper concludes with recommendations for researchers when co-designing with people living with dementia.

Altering design mindsets

Breaking Well-Formed Opinions and Mindsets by Designing with People Living with Dementia is a similar paper. You will need institutional access for a free read, or access via ResearchGate.

The paper reports on three design interventions using co-design activities with people diagnosed with dementia. The interventions offer innovations for co-designing with this group.

Who do we include in co-design?

Traffic light icon with Problem in red, Analysis in Yellow, and Solution in Green. Academics talk about “vulnerable groups” based on ethics approval language. But what they mean is, people who have difficulty participating because they have a disability, illness, or some other condition. Indeed, some ethics requirements are so protective of “vulnerable groups” that they are exclude them from research projects. Consequently their voices are silenced. So how do we include them in co-design and when?

While co-design is the new buzz word, participatory design has been around in academia for many years. Involving communities in decision-making is now recognised as being responsive to community needs. That means going beyond a one-size-fits-all approach to design. 

Participatory design

Participatory design, or co-design, is about genuine inclusion. That is, not just informing the design, but being participants in the design process. However, involving people with complex needs poses some challenges. It’s easy to make assumptions about their capacity to participate and collaborate. However, this comes down to the way the participation process is designed. 

Participatory design and the inclusion of vulnerable groups is the topic of an article from Finland. They use three projects to compare how participatory design might work best. The first explored co-design activities with people with intellectual disabilities living in supported housing. The second focused on culturally diverse young people experiencing crisis situations. The third dealt with nursing students with learning disabilities adapting to work in the health sector.

Challenges and power dynamics

The article covers the challenges, the power dynamics and their methodology. Each of the three projects is documented in detail. The findings show some similarities between the projects, but when it came to users, there were different outcomes and processes. Participatory design became more challenging when there were more pronounced differences in power dynamics.

These three projects provide good information for involving vulnerable groups in participatory design processes. Questions of equality and genuine inclusion is about both the design activities and how the entire project is planned. 

The title of the article is, Whom do we include and when? participatory design with vulnerable groups

From the abstract

This article makes three contributions to participatory design (PD) research and practice with vulnerable groups:

    1. A framework for understanding stakeholder engagement over the course of a PD project.
    2. Approaches to making user engagement and PD activities more inclusive.
    3. An analysis of how the design and power dynamics of PD projects affect vulnerable groups’ participation.

A map of engagement evaluates stakeholder involvement from initial problem definition to design outcome. 

The first looks at codesign activities to support decision-making in the context of intellectual disabilities. The second looks at culturally diverse youth navigating crisis without adequate assistance from public services. The third examines nursing students adapting to work in the health sector without accommodations for learning disabilities.

Comparing the projects reveals patterns in project planning and execution, and in stakeholder relationships. The article analyses how users are defined, engaged and supported in PD; how proxies shape vulnerable groups’ involvement and PD projects as a whole; and opportunities for greater inclusion when the entire PD project is taken into account.

Co-design is not new

Scandinavians have a reputation for good looking and functional design. But there is a gap in the story of an evolving design culture across society. Designers began involving users in their design processes in the 1970s. So co-design is not new and is not a fad, but it is absent from design history.

Maria Görandsdotter says there are two probable reasons why user-centred design has not been included. One is that history has favoured aesthetics, meanings and impact of design rather than the design process. The other is that little has been written about the way design methods have evolved. It’s all been about Scandinavian design and not designing.

A desk has highlighter pens in different colours, working papers and a smart phone.

… the design methods movement sought to understand and describe ‘the new design methods that have appeared in response to a worldwide dissatisfaction with traditional procedures’.

Görandsdotter traces different histories in her book chapter including collaboration with experts in other fields. The idea that only professional designers should design was challenged at an international conference on design participation in 1971. This is where the lines began to blur between designer and user.

There could be two reasons…

Görandsdotter presents two design histories to open up thinking about what design has been and what it might be in the future. Ergonomic user-centred design methods expanded the role of designers in relation to users. This was linked to Swedish disability legislation and research funding. Participatory design came about as a result of designers’ and users’ co-development of computer-based work tools. It expanded ideas of what design was, how how it happens, and with what kinds of materials. 

For anyone interested in design, and particularly collaborative design, this is an interesting read. It puts co-design into an historical context. In doing so, it shows it is not the latest fashion or fad in designing.

The title of the chapter is, Designing Together: On Histories of Scandinavian User-Centred Design. It is published in the open access book, Nordic Design Cultures in Transformation,1960-1980.

Abstract

This chapter focuses on the emergence of user-centred and participatory Scandinavian design ideas and practices in 1970s Sweden. Many of the concepts and methods still highly present – supported as well as contested – in contemporary design stem from the turn towards collaborative designing through the late 1960s and early 1990s.

However, in Nordic design history, these radical changes in design practice have been more or less invisible. This chapter argues that a shift in perspective is needed in design history in order to address this design historical gap, while also highlighting the historicity embedded in contemporary practices of design.

The two examples of transitional design histories given here aim to open up conceptual spaces necessary for re-thinking what design’s histories could be, also in relation to what designing may be becoming.

The first example highlights how ergonomic user-centred design methods expanded the role of designers and designing in relation to ideas of use and users, linked to Swedish disability legislation and research funding.

The second example discusses how participatory design was called into being as challenges of designers’ and users’ co-development of computer-based work tools expanded ideas of what design was, how and with whom designing took place, and with what kinds of materials.

These transitional design histories aim to expand the views of what is discerned as relevant histories of design, while simultaneously calling attention to the historicity embedded in contemporary and emerging design methods and ideas. Following the traces and trajectories of changing design practices, histories of designing contribute to unpacking concepts central to expanding understandings of what design has been, as well as of what it could become.

Co-designing for the digital world

If you want to create something really useful for intended users, asking them to participate in the design process is a good way to go. And that means the design of anything – guides and toolkits included. From Ireland comes a toolkit for co-designing for the digital world where participants are people with intellectual disability.

A collage of faces from around the world and pictures of smartphones. co-design for the digital world.

A series of iterative workshops involving people with intellectual disability formed the foundation of an accessible design toolkit.

Co-design is important in the area of digital design and computer interaction. However, projects that claim to be user-centred often become technology led rather than user driven. A university in Ireland teamed up with a community service that supports people with intellectual disability. With the guidance of researchers, computer science students and community service users engaged in a co-creation process from which a toolkit was developed.

The collaboration highlighted the need for accessible design resources and training materials for both students and users. While there are many resources on co-design processes, and design thinking, few address people with intellectual disability. Those that do exist are not accessible or suitable for people with intellectual disability.

The toolkit is about co-designing with people with intellectual disability. Two overarching principles emerged. Use simple English with short sentences and simpler grammatical structures. Provide visual aids – icons and images – to overcome literacy limitations.

The paper explains the co-creation process in detail. The authors call the users co-designers, which is confusing because co-design usually means all participants including designers.

Understanding the complex process of consent to participate had to be resolved for the users. Another difficulty was encouraging participants speak up about design flaws or issues.

The title of the paper is, An Inclusive Co-Design Toolkit for the Creation of Accessible
Digital Tools
.

From the abstract

Existing toolkits and resources to support co-design are not always accessible to designers and co-designers with disabilities. We present a study of a co-design process, where computer science students worked with service users with intellectual disabilities. The aim was to create digital applications together.

A series of co-design focus group sessions were conducted with service users previously involved in a co-design collaboration. The information from these sessions was used to devise an accessible design toolkit. This toolkit is intended to generate a sustainable resource to be reused in the student programme at TU Dublin but also in the wider community of inclusive design.

Editor’s comment: Most guides and toolkits are based on well-researched evidence, but the value of the evidence is sometimes lost in technicalities or too many words. A co-design process will seek out the key information that guideline users want and need.

Universal design as ‘symbiosis’

Symbiosis is not a word usually associated with universal design, but it’s another way of looking at it. Symbiosis means interaction between two different organisms living in close physical association to the advantage of both.

An article from Malaysia uses symbiosis in the context of designs for the disabled body advantage the non-disabled body – it’s a win-win.

The article covers the usual introductory material about universal design and then moves into a discussion on indoor spaces. The research questions focus on the application of universal design to achieve integration.

The paper recounts three case studies to show how people with disability can get the same sense of belonging as non-disabled people. The use of materials, space function and space planning each have a role to play.

Case studies

Bill and Melinda Gates Discovery Center showing people looking at exhibits.

Bill and Melinda Gates Discovery Centre

The first case study is the Bill and Melinda Gates Discovery Center in Seattle. The centre fosters a collaborative working environment to educate people about global issues including disability.

The second case study is the Cooper Hewitt Smithsonian Design Museum. This building is a studio of visual and accessible sensory experiences.

The third case study is Hazelwood School in the UK which transformed a school for children with disability into one for all children.

Hazelwood School

All three projects posed challenges to designers to find ways in which everyone could feel welcome and use the spaces. The article provides more detail on each case study and useful references.

The authors conclude that universal design played an important function in aiding architects to design for people with and without disability.

The purpose of universal design is to create symbiotic relationships between people

The title of the article is, Universal design (UD) in indoor space: Symbiosis between disabled bodies and abled bodies. The abstract uses some confusing language and terms, but the article follows universal design thinking. The links to the case studies are also worth a look.


Co-design in Health Care

Entrance to the emergency section of a hospital.. Co-design in health care.

An inclusive design approach means listening.

Health care is a service and like any service, you want the best for your customers. Customer feedback is common with most services, but knowing the problems after the event is not very effective. The first step is setting up a process that is going to get the most useful design decisions. That means co-designing from the very beginning – co-designing the research method.

A new paper documents the process of using an inclusive design approach to design the study. As a report of the process the paper necessarily includes many stories from participants. These stories are rich in information not limited by survey or interview formats and questions. It is up to the listener or researcher to guide these experiences into practical solutions. The methods in this study are applicable to any public service, such as transport or education.

Storytelling and research design

Storytelling often goes beyond describing the immediate barriers and difficulties in using a service to reveal the impact on a person’s life.

“The inclusive design approach to the study was not rigid because inclusive design is about diversity, variability and complexity”

Three design exercises

The study reports on three options for design exercises:

Design Exercise Option One: co-designers talk about any part of the health care service that needs re-design. Then the group imagines a future where the barrier no longer exists.

Design Exercise Option Two: co-designers discuss their own or another’s experience during the Covid-19 pandemic.

Design Exercise Option 3: co-designers use the research centre’s “virtuous tornado” exercise. The virtuous tornado is a diagram with three circles, In the centre is the statement, “Like and Use”. The next ring has the statement “Don’t like or have difficulty using”. The outer ring has the statement “Can’t Use”. See the diagram below.

Three rings of a circle indicating the three statements.

Figure 1 from the report with the three options for activities

Co-design is a hot topic at the moment and this paper adds to the research and ideas of how to run co-design processes.

The title of the article is, Co-Design as Applied to Accessibility in Health Care and comes from researchers based in Canada.

QDN’s Co-design principles

Front cover of QDN Co-design priniciples.Co-design is the new buzzword in the field of disability. But co-design isn’t only about disability inclusion. It’s a design process that seeks the best design for the intended users. Including people from a diversity of backgrounds, ages, levels of capability and experience is good practice. It’s how you do universal design. But what is it exactly and how does it work? 

The ultimate in co-design is to include users from design concept stage. The next best thing is to include users in testing the first prototype. Many design firms say budget and time constraints prevent them from implementing this highly iterative method. But how much does it cost to remedy poor design and lack of compliance? 

Co-design should not be confused with community consultation which seeks opinions about a design. User testing is not a form of co-design either. Co-design is where designers and users share the power of designing together. Co-design processes work for developing products, buildings, websites, services, policies and guidelines.

Queenslanders with Disability Network (QDN) have published their Co-Design Principles. This document obviously focuses on people with disability and the Queensland context. Regulation, legislation and policies such as the state disability plan fill most pages. 

 Five values underpin QDN’s co-design principles and processes:

      • Authentic Voice – We ensure those with limited or no voice are heard and valued
      • Collaborative Action – We learn from collective experiences, values, and wisdom 
      • Rights – We believe in a human rights approach 
      • Respect – We value human difference and diversity 
      • Resilience – We are here for the long term.

Co-design processes

A three page summary has the key points above and the co-design processes. 

The starting place – Craft the question that reflects intent/purpose and invites inquiry. 
Build the team – Get diversity and support inclusion
Discovery Phase – See the issue from different viewpoints, and perspectives. Hear from others including those who disagree
Pause and Reflect – Take time to pause and reflect on what you have learnt in the discovery phase and what you still don’t know before jumping to solutions
Sense-making – Look at the data, story, research, and evidence in their raw form and work together to make sense and meaning of what has been gathered
Generate options – Stage where sense-making starts to yield conclusions, ideas
and possibilities, and people get in the creative zone
Developing Prototypes – Generate as many ideas as possible and develop a working example of the policy, service, program, product, or scenario-based solution
Learning, reworking, and refining – Part of the learning cycle and reworks can produce ‘prototype’ – the solution for testing, piloting, or putting into action
Embed what works – Turn it into action and make it real. Keep people engaged and stay accountable.

The QDN website has more information about the organisation and their activities.

See other articles on co-design: The right to participate in co-design, and What does co-design mean? How does it work? 

Consulting people with disability

Front cover Consulting with persons with disabilities.
Full guidelines

Consulting people with disability just needs careful planning. Yes, of course it takes time, but all consultation takes time. But it is always worth it because it saves time in rectifications later. 

The United Nations Inclusion Strategy has guidelines for consulting persons with disabilities. The main guideline document is very detailed and links with the UN Convention Indicator 5. It covers representative organisations, when to consult, and how to do it. The Easy Read version is very helpful for everyone. 

 

Front cover of Easy Read Guide Consulting people with disability.
Easy Read version

The Easy Read version has the key information. It covers the importance of consulting, taking part in decisions, and working with representative organisations. There are links to the 2030 Sustainable Development Goals with the promise of “leave no one behind”. 

One key point in this version is that people with disability should be involved in decisions about everything – not just things to do with disability. 

 

Some days don’t have 24 hours

Lots of clock faces piled on top of each other showing different times. Week has seven days and every day has 24 hours. We all know that. But some people don’t have the same amount of time available within 24 hours as others. And it isn’t a case of poor time management. Time gets stolen. So what does it mean when I say, “some days don’t have 24 hours”?

Sheri Byrne-Haber pinpoints the issues in her article in Medium about the disability time thief. Sometimes it’s a few moments here and there, and sometimes it a regular chunk. 

This article shows why consulting with people with disability is not a matter of setting a date and time and sending out the invitation. The time of day and the place are really important considerations. 

The title of Byrne-Haber’s article is We don’t all have the same 24 hours. Anyone who thinks that we do lives in a monster privilege bubble.

 

What does Co-design mean? How does it work?

Two men look at a document. One is a doctor the other is a patient. The term co-design is being used more frequently, but what does co-design mean and how does it work? Well, that depends on the context. It could mean a design group working together. Nothing difficult about that concept. Or it could mean involving end users in the design process. This is where it gets more tricky and more questions arise.

At what point do you involve users? Which users do you involve? Will the users have the required knowledge and experience to contribute constructively? Will designers have the skills to be inclusive and listen to users? Participatory action research incorporates both designer and user learning. But these projects are necessarily long and usually have research funding attached. However, they usually produce knowledge and results useful in other settings. 

A related concept is co-design in quality improvement, for example, in a hospital setting. Both staff and patients have a role to play in advancing quality improvement. Differing levels of understanding between staff and patients can lead to tokenism. So how can we equalise knowledge so that everyone’s contribution is constructive? 

A research team in a Brisbane hospital grappled with this issue. Their research report is written in academic language and not easy to read. Nevertheless, they conclude that effective patient-staff partnerships require specific skills. Briefly, it means adapting to change, and generating new knowledge for continuous improvement.

A framework

The researches developed a framework that includes ten capabilities under three key headings. 

Diagram of the Co-design Framework.

 

    1. Personal attributes:
      • Dedicated to improving healthcare
      • Self-aware and reflective
      • Confident and flexible

2. Relationships and communication attributes:

      • Working and learning as a team
      • Collaborating and communicating
      • Advocating for everyone

3. Philosophies/Models:

      • Organisational systems & policy
      • Patient and public involvement best practice
      • Quality improvement principles.

These nine points are connected with the overarching theme of sharing power and leadership.

Title of the article is, “Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review”.

Other posts on co-design include The right to participate and co-design, and Co-design is another skill set

Videos more effective than policy

A brightly coloured film strip with the word Video on it.Policy is often seen as the way to make change. But when it comes to being inclusive it hasn’t worked very well. If policies, codes and papers are not accessible to all stakeholders, how can we create inclusion? Janice Rieger says videos are more effective than policy.

The title of her short paper and workshop is, Reframing Universal Design: Creating Short Videos for Inclusion. Her research provides insights on how videos travel and reach different audiences. This results in a significant impact and enacted change and informed policy. Dr Rieger concludes that “video impacts more than policies, codes and papers ever can”. 

Here is an extract from her paper:

“Video is a visceral medium, offering the opportunity to reframe universal design practice and education. It captures movements and can be co-created with people with disabilities. Videos co-created for inclusion encourage detailed and rich embodied knowledge and experiences because information is prompted by association with one’s surroundings. Significantly, videos have the capacity to excavate personalized knowledge of those with different abilities and uncover systems of exclusion that are often hidden or naturalized, and shamedly rendered invisible through policies, codes and papers.”

In a short video titled, Wandering on the Braille Trail, Sarah Boulton explains how she navigates the environment using her white cane and tactile ground markers.

 

Designers need help to prioritise

A table with white notes with the word "ideas" written in different ways on each one.Designing inclusively means to do the best you can to include everyone. But conflicts arise when a design feature suits one group and not another. So how do designers decide what is best? This is where designers need help to prioritise features that provide the most social good. And where else to look but to user groups, older people and people with disability.

A thoughtful conference paper discusses some of the underlying philosophy of inclusive/universal design and takes the road of pluralism. The authors argue that inclusive design, if taken literally, is unattainable. Justice and fairness are discussed and the authors frame this as ‘design as a deliberative enterprise’. Two case studies where people with disability were included in the design process provide a practical basis for their arguments.

The title of the paper is, Inclusive Design as a Deliberative Enterprise: The multifold value of involving disabled people in design.

Editor’s note: Taking the dictionary definition of “inclusion” for the purposes of research can be helpful if it aids implementation. Perhaps “universal” becomes a better term because it is not about perfection. Rather it is about the iterative process of continuous improvement to include as many people as possible in designs.

Abstract

Designers are challenged to consider human differences in order to meet the needs of the widest possible audience – the purpose of inclusive design. Yet, paradoxically, taking differences seriously may severely restrict ‘the widest possible audience’. How can design be fair if it is impossible to meet the needs of all? Earlier work on inclusivity and quality in design argued for conceiving inclusive design as a deliberative enterprise that involves both designers and the users they design for. A critical reason to involve the latter is that those affected by design decisions are likely to be best positioned to collect contextual information about the needs and demands to be
addressed.

In this paper, we build on this earlier work to take a more detailed look at the deliberative feature of inclusive design. To this end, we analyze two cases in which disabled people, not educated as designers, are involved in design: the first case concerns disabled students and staff of KU Leuven, who give students in engineering-architecture advice on their design projects; the second case concerns the Accessibility Advisory Council in Leuven, Belgium, which is chaired and composed by disabled people, and gives advice on design projects the city is involved in. The analysis is based on written reports and conversations about the project discussions with disabled students/staff and the Advisory Council.

Through this analysis we show that the value of deliberation in this context is multifold: letting contextual information filter in the design process; allowing users to advance reasons for and against possible design alternatives, and draw attention to implications, inconsistencies, ambiguities affecting the relevant beliefs and preferences; enabling both designers and users to reflect on reasons that can be shared, and putting them in a situation of interaction where they can recognize their interrelation with a group.

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