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2020 | Book

Framing in Context Read chapter Read first chapter

HCI and Design in the Context of Dementia

Editors: Dr. Rens Brankaert, Prof. Gail Kenning

Publisher: Springer International Publishing

Book Series : Human–Computer Interaction Series

Part of: Springer Professional "Wirtschaft+Technik" , Springer Professional "Technik" , Springer Professional "Wirtschaft"

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About this book

Old age is currently the greatest risk factor for developing dementia. Since older people make up a larger portion of the population than ever before, the resulting increase in the incidence of dementia presents a major challenge for society. Dementia is complex and multifaceted and impacts not only the person with the diagnosis but also those caring for them and society as a whole.

Human-Computer Interaction (HCI) design and development are pivotal in enabling people with dementia to live well and be supported in the communities around them. HCI is increasingly addressing the need for inclusivity and accessibility in the design and development of new technologies, interfaces, systems, services, and tools. Using interdisciplinary approaches HCI engages with the complexities and ‘messiness’ of real-world design spaces to provide novel perspectives and new ways of addressing the challenge of dementia and multi-stakeholder needs.

HCI and Design in the Context of Dementia brings together the work of international experts, designers and researchers working across disciplines. It provides methodologies, methods and frameworks, approaches to participatory engagement and case studies showing how technology can impact the lives of people living with dementia and those around them. It includes examples of how to conduct dementia research and design in-context in the field of HCI, ethically and effectively and how these issues transcend the design space of dementia to inform HCI design and technology development more broadly. The book is valuable for and aimed at designers, researchers, scholars and caregivers that work with vulnerable groups like people with dementia, and those directly impacted.

Table of Contents

Frontmatter
Chapter 1. Framing in Context
Abstract
A higher proportion of the population, than ever before, is in the older age range. Diseases and conditions such as dementia, where old age is a considerable risk factor, are likely to increase. The increased incidences of dementia have extensive social and economic implications and will increase stress on existing healthcare systems and social structures. With no cure for dementia on the horizon attention is turning to how to improve the quality of life of people living with dementia. In designing to support quality of life, it is important to understand not only the individual needs and wants, but also the broader context of care. This includes the perspectives of local, national and international stakeholders in dementia care. Human–computer interaction researchers and designers are increasingly taking on the challenges and opportunities of working in the complex field of dementia. They have made valuable contributions to the well-being and quality of life of people both living with dementia and stakeholders in their care. In this chapter, we show the importance of understanding context and provide an overview of current developments in relation to challenges in dementia. The knowledge and skills discussed and approaches, methods, methodologies and tools used are transferable and can be adapted and used for other marginalized and disadvantaged groups in society.
Gail Kenning, Rens Brankaert

Inclusion and Recognition: In the Context of Dementia

Frontmatter
Chapter 2. Reciprocal Design
Abstract
Design and technology can support people as they transition into old age by finding ways to support their clinical, medical and psychosocial health and well-being. But to make a contribution designers and developers need, not only to understand how ageing and dementia impact on populations at a societal level, but also the impact on communities, stakeholders and individuals. Co-creation and participatory approaches are increasingly being used to engage directly with potential users and gain their input into design and development processes. However, how do we engage with those whose needs may be greatest, but are unable to articulate their wants and needs through the usual channels such as talking, writing or signing? Furthermore, what are the ethical imperatives for designers and developers when working with participants who may not be able to, for example anticipate or imagine the end product or outcomes of the design process they are engaged in? This chapter focuses on a reciprocal approach to design and development. It aims to ensure the participatory design process, that enables designers and developers to benefit by gaining knowledge that will inform their designs, from the lived experience of participants, is reciprocated. This means ensuring that the participants also benefit from the process and experience. The chapter shows the importance of designers and developers reaching beyond only understanding participant’s needs, towards developing empathy and recognising their context.
Gail Kenning
Chapter 3. Warm Technology: A Novel Perspective on Design for and with People Living with Dementia
Abstract
Incidences of age-related diseases such as dementia are increasing. Attention is shifting to living well with dementia, and how non-pharmacological interventions such as technology can play an important role to support this. However, there are still many challenges ahead. Technology is often devised without a full consideration of the target user group, or a thorough understanding of the context in which it is to operate. Furthermore, technology presents endless possibilities that can guide or impact decisions users make. In this chapter we discuss five, so-called, technology temptations. These are habits that are assumed to occur in technology development. It suggests that technology is omnipresent, often screen-focused, equipped with sensors everywhere, presumes “natural” interaction works and is often over-integrated. To counteract these “temptations” we propose technology development that includes people with dementia in the process, is easy to use by them and takes their experience as leading. Warm Technology respects this particular user group and their specific needs for improving their well-being and quality of life. To showcase Warm Technology, we illustrate three cases. Especially for people living with dementia Warm Technology shows potential for a new chapter in technology design.
Wijnand IJsselsteijn, Ans Tummers-Heemels, Rens Brankaert
Chapter 4. Personalization and Compassionate Design
Abstract
How can designers and technologists navigate the complex ethical issues that are involved in designing for people living with dementia? How is it possible to design appropriately and with sensitivity so that a person’s dignity and sense of self can be retained even when the person can no longer remember who they are? How can successful design solutions be created when the user can no longer communicate verbally and is unable to relate to the world around them? This chapter will propose that Compassionate Design provides a useful way forward. This approach prioritizes personalization, sensory stimulation and designing to maintain connections between people and the world around them. By keeping the person living with dementia at the very heart of the design process, understanding their lived experiences and personal histories, it is possible to create appropriate, meaningful and useful solutions to assist in dementia care. Person centred and relational approaches to care provide the context for this chapter and the importance of including dementia ‘experts by experience’ in the design process is explained.
Cathy Treadaway
Chapter 5. Making Space for Uncertainty
Abstract
Designing appropriate, safe and beneficial products and services for people with complex diseases presents a challenge for designers who have limited knowledge of the disease. This chapter explores some of these challenges and addresses how to support designers during the design process by exploring uncertainty. It is underpinned by research undertaken as part of a project to explore design processes and designs of hand-held playful objects for people living with advanced dementia. Specifically, this chapter reports on a workshop with designers that enabled them to draw on their experience and training in design. It provided creative opportunities to reflect on their personal values and challenges their preconceptions about designing for people with the disease.
Jac Fennell
Chapter 6. Approaches for Authentic Engagement: Younger Onset Dementia
Abstract
Efforts in Human–Computer Interaction (HCI) to better understand the experiences of people with dementia should consider a bespoke approach; one that is not only responsive to the individual’s situation and circumstances but at the same time, thoughtful, sensitive, and respectful. Adopting a bespoke approach is a relatively unexplored idea in research, also for those in HCI designing digital technologies in dementia settings. We don’t often hear about a bespoke approach in current corpus of HCI methodologies when researching and designing in sensitive settings. Also, most efforts in HCI and dementia have been primarily focused on the elderly in the more advanced stages of dementia. In this chapter, we focus specifically on individuals with Younger Onset Dementia (YOD). This is because individuals with YOD are an underrepresented group in social, medical, and government systems with most research and design efforts directed at those with Late-Onset Dementia (LOD). Based on our research collaborations with individuals living with YOD, we wish to offer the HCI community a more nuanced understanding of dementia. Our collaborative and immersive research approach also offers insights for how HCI can better tailor and even design their methodologies and research tools when researching and designing with and for those living with YOD.
Dennis Frost, Suzanne Dillon, Stephen Grady, Jeffrey Thurlow, Tuck Wah Leong, Jeanette Bell

Design Approaches: In the Context of Dementia

Frontmatter
Chapter 7. Against Dedicated Methods: Relational Expertise in Participatory Design with People with Dementia
Abstract
This chapter narrates the search for ways to involve people with dementia in the design process based on insights from three projects, several workshops and an educational module involving people with dementia and their network of caregivers and family. This six year-trajectory was part of a Ph.D. project and started ambitiously with the endeavor to find a dedicated method for involvement, inspired by those developed to involve children or people with aphasia. The aim was to develop a set of design guidelines for (successfully) involving people with dementia in the design process. It became clear that using a set of guidelines as a universal, dedicated, or passe-partout way of working for every person with dementia, would not work. We argue that the foundations for a more suitable individualized approach lie in the build-up of a personal relationship between the person with dementia and the designer. Based on such a personal relationship, ways to facilitate involvement of a person with dementia can be defined and design decisions can be collaboratively taken. Person-Centered Care is seen as a guide in the build-up of the relational expertise that a designer needs in order to collaborate with a person with dementia and that enables designers to value and articulate shared decision making.
Niels Hendriks, Karin Slegers, Andrea Wilkinson
Chapter 8. Materializing Personhood: Design-Led Perspectives
Abstract
As a result of the work by Tom Kitwood, one of the main aims of dementia care is the maintenance of personhood; therefore, this article reflects on how design can contribute to this purpose. Kitwood identified ten different interactions toward people with dementia that can enhance well-being and contribute to the preservation of personhood, which he called Positive Person Work. Each interaction is explored from a design perspective: speculating on how we might design for the experience of specific interactions, taking into account different roles that artefacts can have in mediating them, and how they can be used as considerations for involving people with dementia as participants in a codesign process. These Positive Person Work interactions also served as evaluation themes for participants to comment on the experience of using the designed outputs of this research, adding a user perspective. The ideas we share in this article do not intend to be prescriptive or to propose one way of designing for and with people with dementia. Instead, they aim to look at Kitwood’s framework from a design perspective, informing and inspiring design researchers and practitioners who work with people with dementia.
Rita Maldonado Branco, Joana Quental, Óscar Ribeiro
Chapter 9. Prospective Memory Failure in Dementia: Understanding and Designing to Support
Abstract
In this chapter, we contribute to the growing body of work on HCI and dementia through a review of past research and design to support prospective memory (PM) in older people with dementia and their caregivers. PM is a particular type of memory that enables recall and action on future intentions, and it is critical in everyday life. As people with dementia experience the loss of PM function over time, they find it harder to follow through on everyday activities like taking medication, attending appointments or maintaining contact with family and friends. Consequently, caregivers may then shoulder increased task management responsibilities, contributing to caregiver burden. A wide range of technical and non-technical interventions to support PM for people with dementia and their caregivers is reviewed, bringing forward the growing focus on research in real-world home settings and the importance of user involvement in design. This is a relatively new and exciting area for research and design, presenting lessons from past research to support future work.
Laura Ramos, Laurie Miller, Elise van den Hoven
Chapter 10. Intuitive Interaction Framework in User-Product Interaction for People Living with Dementia
Abstract
This chapter is focused on intuitive interaction with various interfaces for people living with dementia. First, we describe the enhanced intuitive interaction framework, which contains a continuum suggesting various pathways to intuitive use that can be included in the design of interfaces. We discuss how it relates to users, and specifically how it may assist users living with dementia. Then three empirical studies conducted over two continents are discussed. Each involved participants living with dementia using interfaces in a lab. Data were analyzed for task completion, reaction times and completion times (Studies 1 and 2), and presence and effectiveness of physical and perceived affordances (two of the proposed pathways to intuitive use on the EFII continuum). These data were then compared according to the enhanced intuitive interaction framework, and the findings suggested that employing interface features that are more familiar and more ubiquitous for the target population would likely make the interfaces more intuitive for people living with dementia to use. The implications of these finders for users living with dementia and those designing for them are discussed.
Alethea Blackler, Li-Hao Chen, Shital Desai, Arlene Astell
Chapter 11. Using the TUNGSTEN Approach to Co-design DataDay: A Self-management App for Dementia
Abstract
This chapter briefly describes a co-design project with people living with dementia, family care partners and clinical teams to create DataDay—a self-management app with an accompanying memory services portal. The project utilised the Tools for User Needs Gathering to Sustain Technology ENgagement (TUNGSTEN) approach of working with the users of technology as experts. Over seven months, four interactive sessions took place examining interactions with smart devices, current device and app use, and prototyping the DataDay interface and portal. This chapter focuses on the co-design sessions with people living with dementia and family caregivers and illustrates the benefits of the TUNGSTEN approach for co-designing with this population.
Arlene Astell, Erica Dove, Chris Morland, Steve Donovan

Design and Experience: In the Context of Dementia

Frontmatter
Chapter 12. Assistive Media for Well-being
Abstract
Personal digital media such as photos, music and films play a pervasive part in contemporary life by helping us to remember the past, communicate with each other and represent our identity to others. In this chapter, we explore the value of such media for supporting well-being in older age, drawing on concepts from literatures on art, reminiscence and music therapy. Theoretically, we argue for a new category of assistive technologies involving media creation and consumption to enhance well-being. We propose a framework for understanding and designing such assistive media systems which highlights the interaction between media item, author and audience. This framework is then illustrated through early attempts to explore a new kind of digital story therapy for people with dementia in a residential care setting. We conclude with recommendations for the design of future ‘assistive media’ systems and experiences that might enhance not only the lives of people with dementia, but also those around them.
David M. Frohlich, Emily Corrigan-Kavanagh, Sarah Campbell, Theopisti Chrysanthaki, Paula Castro, Isabela Zaine, Maria da Graça Campos Pimentel
Chapter 13. Exploring Everyday Sounds in Dementia: Practical Guidelines for Interactive Workshops
Abstract
Motivated by the successes of music in dementia, researchers and designers in HCI are exploring the potential benefits of non-musical sounds from everyday life for people with dementia. Research in the field of building acoustics and psychology is suggesting that re-presenting everyday sounds as soundscapes in the care space can influence emotional states, relieve boredom, and reduce stress. However, as the responses to sound are personal, and each person experiences dementia differently, an understanding is needed on how people with dementia individually react to sound. Consequently, participatory approaches are needed to take into account individual needs, preferences, and relationships in the process of identifying meaningful sounds. In this chapter, we reflect on our exploratory study, consisting of a series of interactive workshops involving people with dementia at a day-care facility to explore their personal responses to sound. We adopted a design research approach by using the dementia soundboard, a design artifact to facilitate re-experiencing of everyday sounds in the workshop space. Based on our experiences, we provide a critical reflection on our research protocol and articulate practical guidelines to enable the involvement of people with dementia and to promote social engagement and meaningful activity in the process of identifying affective audio content.
Maarten Houben, Rens Brankaert, Saskia Bakker, Inge Bongers, Berry Eggen
Chapter 14. Color Design and Dementia: Harnessing HCI to Improve Environmental Visual Literacy
Abstract
Color design for people living with dementia has moved beyond esthetics. In the past, color design strategies focused on creating environments that were engaging, harmonious, and practical, either in relation to people living with dementia but more often in relation to other stakeholders or decision makers. While color design strategies continue to focus on encouraging engagement, this is now just a starting point when designing for people living with dementia. In this context, specific color design strategies have a number of key aims. The first of these is to develop color design strategies that address the variable color vision needs and visual challenges experienced by those living with dementia. A second aim is to ensure that color design strategies enhance environmental visual literacy and help improve orientation, wayfinding, and the safe operation of daily activities. A third aim is to ensure that color design strategies are underpinned by the imperatives of inclusivity, user-centered involvement in decision-making, and respect for people living with dementia.
Zena O’Connor
Chapter 15. Sharing a Virtual World with People Living with Dementia
Abstract
Designing Virtual Reality (VR) experiences have become a growing interest in Human–Computer Interaction (HCI) with recreational VR applications coming to the market. However, consideration for how these experiences may be designed for people living with dementia to provide both comfort and enrichment has rarely been explored. With HCI design shifting toward an emphasis on designing with people living with dementia rather than for, this chapter focuses on the people living with dementia and their family members who have been rarely recognized as worthy of design intervention. Drawing on two recent studies, this chapter presents a detailed understanding in co-creating meaningful experiences for people living with dementia and their families in VR. Results provide insights into their shared social experiences and place personalization as an overarching narrative for designing evocative, meaningful experiences. This chapter concludes with future directions for work in VR focusing on designing for contested realities, shared experiences, the personhood of carers, and representing an individual in the virtual world.
James Hodge, Kellie Morrissey
Chapter 16. Bridging the Gap: Design for Intergenerational Engagement in Dementia Care
Abstract
Designing for social inclusion in dementia requires careful consideration, appropriate interactions and technologies to effectively enrich and support engagement. Intergenerational interactions between young people and people with dementia have been widely documented to be mutually beneficial through challenging perceptions of one another. As such, positioning younger people and people with dementia as key actors in user-centred design processes has been a hallmark of our research to date. In this chapter, we discuss design processes and outcomes from bespoke technologies, which encourage intergenerational engagement and challenge perceptions in dementia care. We reflect on the use of such technologies, and the strengths of younger volunteers and people with dementia in this process. We introduce examples of the technologies we have designed and evaluated in this context, discussing the challenges and opportunities of designing with the young and old.
Sarah Foley, Daniel Welsh

Design In the Field: In the Context of Dementia

Frontmatter
Chapter 17. Designing Sentic: Participatory Design with People Living with Dementia
Abstract
The number of people living with dementia is increasing rapidly and puts pressure on our society. An increasing body of evidence suggests that listening to music and engaging with systems that allow you to do this can be beneficial in dementia care. Building on a growing interest in HCI for designing technology for dementia, this chapter will focus on how to provide people with dementia personal and direct access to a music system. This paper presents the design process of Sentic, a music player with an interface that can be tailored to fit its users’ needs. An interface can be selected that suitably matches with the capabilities of people living with dementia. The design is the result of using a participatory design approach. A strategy of adaptation was found to be the most appropriate in designing for people living with dementia. This chapter shows the potential of tailoring interactions so that they support and maintain autonomy and facilitate personal access to technology, for people with dementia, and offers considerations and opportunities for future design and research.
Myrte Thoolen, Rens Brankaert, Yuan Lu
Chapter 18. Insights from an Exergame-Based Training System for People with Dementia and Their Caregivers
Abstract
As a result of aging societies, the prevalence of dementia, and accordingly the need for care is increasing. The use of information and communication (ICT)-based technologies may facilitate and promote a self-sustaining lifestyle for people with dementia and their caregivers. In this article, the authors provide results from a design study of an ICT-based system to support activity and mobility for people with dementia and their care-network. The authors investigated practices, attitudes and the social contexts of 26 people with dementia and their caregivers and designed an ICT-based prototype system that was evaluated afterwards in a four-month evaluation study. Here, the goal was to assess usability, user experience and acceptance and to analyze the effects of system usage on physical, cognitive and socio-emotional conditions of people with dementia and their caregivers. Our results indicate that the system supports people with dementia and their related caregivers partly during their social and daily activities and improves their quality of life. Furthermore, results suggest that motivation, collaboration and cooperation among the parties involved were increased by using the system. Integration and social embeddedness of ICT-based systems into the daily lives of people is the key for long-term and sustainable use. However, the involvement of caregivers and stakeholders seems to be an additional facilitating factor for daily life integration and may promote long-term use.
David Unbehaun, Konstantin Aal, Daryoush Daniel Vaziri, Rainer Wieching, Volker Wulf
Chapter 19. Working with Experts with Experience: Charting Co-production and Co-design in the Development of HCI-Based Design
Abstract
This chapter outlines the co-design process for ‘Let’s meet up!’, a hybrid electronic system, which combines traditional board games and digital features, created to facilitate and maintain social engagement for people living with dementia. It allows people with dementia to stay in touch with their loved ones and to remain socially and physically active by arranging joint activities for themselves through a simple, user-friendly tangible interface. Let’s meet up! is one of four solutions developed by a multidisciplinary team of researchers and people living with dementia as part of the European MinD project. The aim of MinD was to research and co-develop mindful design solutions to support people with dementia and their caregivers with self-empowerment and social engagement. Co-design with groups of experts with experience (GEE), including people with dementia, caregivers and care professionals, was used throughout the research and development process, comprising data collection, design idea development, decision-making, design concept and prototype development, to ensure the relevance and appropriateness of those ideas, concepts and prototypes for people with dementia. Co-production was increasingly used to enable GEE to co-host and co-curate the co-design sessions, and to take ownership of the process. The chapter explains the process of research and the activities undertaken and provides recommendations for this symbiotic approach, taking into account both the benefits and the limitations.
Kristina Niedderer, Dew Harrison, Julie Gosling, Michael Craven, Alethea Blackler, Raquel Losada, Teresa Cid
Chapter 20. Using Design to Engage Stakeholders to Explore the Quality of Life of Families Living with Dementia
Abstract
Due to limited efforts being made in dementia home care and a lack of well-trained family caregivers, families living with dementia often experience a loss of quality of life at home. To address this, there is a need for stakeholders from different fields to collaboratively develop social support, particularly emotional support. Design is increasingly being recognized as a way to explore and improve current social issues. Building on insights from participatory design for social innovation, and using an action research approach, this study combines design-directed and design-invited approaches to engage cross-disciplinary stakeholders to explore and improve dementia home care. This research engages with the observation and feedback of key stakeholders regarding their living environment to focus on the quality of life of people with dementia. It guides stakeholders in the development of two innovative services Home-based non-pharmacological Interventions for Dementia and Respite tourism for dementia families. The major findings are that due to the complexity of social issues, design needs to use multiple engagement methods and tools during the exploration and innovation phases; designers need to act as directors, facilitators, and observers during the design process; and the roles of stakeholders also change and include discussers, followers, and leaders. Through these changes, the stakeholders are supported to bring their expertise into new practices to improve the quality life of persons with dementia.
Chih-Siang Wu, Chen-Fu Yang, Yuan Lu
Chapter 21. Supportive Technologies for People with Dementia: A Closer Look into an Interdisciplinary Field
Abstract
Technologies can support people with dementia to live an independent life at home. These supportive technologies have a variety of purposes, such as support in day-to-day activities and safety. There are also technologies with a focus on engaging in meaningful activities, supporting communication, information, and screening. Iterative co-design with end-users is needed to ensure high accessibility, relevant benefits, and satisfactory use of these supportive technologies. Nevertheless, most of the abovementioned developments lack frequent co-design cycles, and people with dementia are rarely involved in the design process. Various scientific disciplines are involved in researching and developing supportive technologies. These disciplines range from psychology and neuroscience to design and engineering. The disciplines differ in their research paradigm and design approaches in developing, designing, and evaluating the technology. In this chapter, we take a closer look at the methods and materials used for the active involvement of people with dementia. We provide insights from Active and Assisted Living (AAL) development projects that exemplify multidisciplinary approaches. We share insights gained from in-depth interviews with researchers from different disciplines. We conclude with a discussion on the challenges of multidisciplinary collaborations and possible ways forward to give people with dementia their desired role in the development of meaningful supportive technologies.
Sandra Suijkerbuijk, Henk Herman Nap, Mirella Minkman

Closing

Frontmatter
Chapter 22. Where from and Where Next?—HCI and Design in the Context of Dementia
Abstract
Design and HCI in the context of dementia share current research and practices in relation to working for and with people living with dementia. In this chapter, we will revisit the contributions to the book and see how they reflect inclusive practices in HCI and design. The book is divided into four sections covering Inclusion and recognition, Design approaches, Design and experience and Design in the field. Each section includes a wide range of contributions and provides academic and practical insights, guidelines, and principles for designers and researchers with an interest in working in the context of dementia. In addition, we explore future challenges and opportunities for both experienced designers and researchers in the area of dementia, and those new to the field. Finally, we suggest some unexplored areas for investigation working in HCI and Design with sensitive user groups, and set an agenda for the future.
Rens Brankaert, Gail Kenning
Metadata
Title
HCI and Design in the Context of Dementia
Editors
Dr. Rens Brankaert
Prof. Gail Kenning
Copyright Year
2020
Electronic ISBN
978-3-030-32835-1
Print ISBN
978-3-030-32834-4
DOI
https://doi.org/10.1007/978-3-030-32835-1