Dementia Lab 2019. Making Design Work: Engaging with Dementia in Context

Inhaltsverzeichnis

1. Frontmatter

2. Inclusion and Participation

   1. Frontmatter

   2. The Relevance of Involving People with Dementia in Design Research

      Niels Hendriks, Karin Slegers, Andrea Wilkinson

      Abstract

      Multiple researchers and designers have attempted to involve people with dementia in the design research process. This paper tackles the relevance of doing so. It discusses how society can benefit from involvement of people with dementia in the design process. In addition, it looks at how people with dementia experience such involvement (and how relevant it is to them). The paper consists of theoretical reflections complemented with experiences from a case study and an educational module on design and dementia. The paper ends with providing concrete suggestions on how to increase relevance using the agonistic qualities of design and the way participation in design can help to meet unmet needs of people with dementia.

   3. Towards Dementia Things

      How Does Participatory Research and Design Improve Quality of Life in Contexts of Dementia? Carolin Schreiber, Jan Üblacker, Diana Cürlis, Nora Weber

      Abstract

      In the early stages of dementia, care often takes place at home. In the project Dementia Things we form competence teams consisting of designers, professional caregivers, persons with dementia and their care giving relatives. We ask for the everyday problems of persons with dementia and their relatives in private environments and use methods of field research and participatory design to understand the specific contexts of dementia and improve the quality of life. From the ongoing field work we were able to identify four factors influencing the participatory design process: building up trustful relations in the field, the role of the professional caregiver, the surplus of overcoming verbal barriers with design methods, and the overall benefit of changing perspectives and knowledge transfer within the competence team.

   4. Evaluating Three Validation-Methods for an Architectural Intervention for Seniors with Dementia in the Empathic Design Framework, a Case Study

      L. P. G. van Buuren, M. Mohammadi, O. Guerra Santin

      Abstract

      Designing for seniors with dementia is a difficult task, because they are more dependent on the design of the building in order to perform activities of daily life (ADL). The Empathic Design Framework with the four phases (explore, translate, elaborate, and validate) makes it possible to design a suitable building for this target group. Using this framework, developed and translated design principles need to be implemented and tested in order to validate an architectural intervention which stimulates ADL. In the case study presented in this paper, three methods were used to validate the architectural intervention of door decals: performance-based orientation task (M1), fly-on-the-wall observation (M2), and questionnaire-based interview (M3). This paper presents the evaluation of these three methods in order to discover which method or methods suit best the purpose of validating an architectural intervention. In this study, multiple variables were tested; however, it was not possible to test each variable with every method. Based on this case study, we recommend to choose the application of the methods according to the to be tested variables and the type of behavior that needs to be measured: M1 and M2 are more suitable for the measurement of real behavior change of the target group; while M3 suits well if opinions and the level of acceptance need to be measured.

   5. ‘Build Your Story’: A Research Game That Includes Older Adults’ Perspectives

      Susan van Hees, Meriam Janssen, Katrien Luijkx

      Abstract

      Insight in older adults’ own ideals, ideas and experiences is crucial to enable meaningful applied research activities. To increase and enable older adults’ perspectives to be heard in academic research, innovative methods are needed. This research presents an analysis of a newly developed research game called ‘Build your story’. The aim of designing this game was to develop an innovative, participatory methodology that enables the collection of stories that older adults share about their daily life experiences, ideas and ideals. These are considered important input in setting and renewing a research agenda that attunes to older adults’ perspectives on what is important in their life. The game was tested in individual and group sessions with older adults with and without dementia. Despite critique on the design and use, observations and experiences also demonstrate a different method allows different stories to be told. Positive questions and associations offer opportunities for dialogue.

   6. Developing Dementia Personas for User Centered Architectural Design Considerations in Non-specialized Contexts

      Izoné McCracken, Retha de la Harpeand, Monica Di Ruvo

      Abstract

      This paper is concerned with dementia persona development as a research and design tool to help architects and designers to uncover important information towards design processes and decisions in practice. Architects design spaces for specific functions, but do they truly consider integrating these objectives with a focus on creating meaningful spaces for people with dementia while designing and if so, on what grounds. The reason for using dementia personas and not directly approaching people with dementia is due to the fact that it can be very hard to understand the needs of dementia care as people with dementia are dependent on caregivers and family members, in addition to this many designers and architects do not have ethical clearance to work with people living with dementia; as a consequence of their designation. A literature analysis and participatory workshops were used to develop the dementia personas discussed in this paper. The process of developing dementia personas posed many challenges; iterative revisions had to be made to make the personas relatable and concrete enough to be used as a successful design tool. The complex context of the case requires more personas to represent the diversity of persons with dementia in the service provision on different levels and this is the start of the persona development process. The findings are reported herein.

   7. Emily Carr University Zeitgeist Program

      Bringing Together Student Designers and Care Home Residents to Co-design Publications — a Social Innovation Project Caylee Raber, Jon Hannan, Mariko Sakamoto, Srushti Kulkarni, Nadia Beyzaei, Amen Salami, Donna Levi, Alison Phinney

      Abstract

      The Emily Carr University (ECU) Zeitgeist Project is a unique design-based project concept where communication design students and residents in care homes engage in a variety of activities over six sessions together, with the goal of co-creating mini-publications featuring the residents’ stories. While the project’s overarching purpose is to provide social interaction and inter-generational exchange for the residents and students, it also provides an opportunity for the residents, including those living with dementia, to showcase their stories and to actively participate in a design project. The students in turn, not only have the opportunity to develop their design skills, but also learn to connect as young adults with older individuals, who have meaningful stories and experiences to share with them. Overall, this paper discusses the relationship building that occurs between the students and the residents, specifically the storytelling and co-designing relationships, that are key to the ECU Zeitgeist Project’s success as a reciprocal and inclusive program engaging older adults, particularly those with dementia, in collaborative and participatory design processes.

3. Technology and Experience

   1. Frontmatter

   2. Sentimental Audio Memories: Exploring the Emotion and Meaning of Everyday Sounds

      Sarah Campbell, David Frohlich, Norman Alm, Adam Vaughan

      Abstract

      Numerous studies have shown the beneficial effect of music for people with dementia, particularly within reminiscence therapy. In this project we explored the potential role of everyday sound recordings which evoke an emotional response for producing similar benefits. To first explore what we call ‘sentimental’ sounds we conducted an online survey in partnership with a dementia organisation, using a co-design approach with carers and family members of people with dementia. Sounds and memories for each of the four quadrants of a circumplex emotion space were captured as free text narratives. The survey demonstrated what sounds are sentimental, and the memories and emotions associated with these sounds. Sounds eliciting positively valenced emotions and memories comprised natural, familiar soundscapes. In contrast, sounds evoking negatively valenced emotions and memories were manmade and intrusive. Results showed consistency across people as to the types of sounds eliciting the same emotions, although the meanings of these sounds were highly idiosyncratic. Further, some sounds were associated with both positive and negative emotions through poignant memories, depending upon the context and nature of the particular sound. Results also indicated the value of narratives for structuring the presentation of sounds themselves.

   3. Improvisation and Reciprocal Design: Soundplay for Dementia

      Gail Kenning, Alon Ilsar, Rens Brankaert, Mark Evans

      Abstract

      Design and research studies regarding the impact of music on the wellbeing of people living with advanced dementia are ongoing. Many of these focus on reminiscence and the use of familiar songs, music and instruments. However, fewer studies have explored the creative and improvisational aspects of music making with people living with advanced dementia. This project explored the response of people from this group to an innovative gestural electronic instrument—The AirSticks^TM. The engagement promoted creative musical improvisation and resulted in a highly emotive response from one particular participant, suggesting the creative impulse can be retained.

   4. Exploring How an Interactive Placemat Can Influence Eating Activities for People with Dementia

      Ward de Groot, Maarten Houben, Bart Hengeveld

      Abstract

      People with dementia often face problems during eating activities, due to the loss of physical and cognitive functioning. With an increasing amount of research suggesting how everyday sounds can have beneficial effects for people with dementia, we raise the question whether everyday sounds related to eating can improve dining experiences in care facilities. To explore this, we deployed an interactive placemat during the eating activities of people with dementia. Observations and interviews gave insight into the interactions with the placemat, how these interactions offered distractions and the general atmosphere during eating activities. We encourage design-researchers to explore how sound-based interventions promote good eating behaviors, but an understanding of how people with dementia engage with sound and other sensory stimuli is needed in order for these interventions to be successful.

   5. Surveillance Technology in Dementia Care: Implicit Assumptions and Unresolved Tensions

      Yvette Vermeer, Paul Higgs, Georgina Charlesworth

      Abstract

      This paper examines the concept of “Surveillance Technology [ST]” as it is used in ageing and dementia research but which suffers from poor definition. We attempt to clarify this imprecision by contextualizing a brief history of the development of ST and provide a summary of the research in this area. We contrast this with the responses provided by a public and patient involvement group of people living with a dementia diagnosis, or experience of supporting people with dementia. ST operates in multiple interacting ways, all of which need to be taken into account in research, public and policy debate. As a technology it is often seen as a way of assisting individuals and therefore classified as an Assistive Technology [AT]. However, the meaning of ST used in dementia care has pragmatic implications beyond the meeting of the needs for “safety and independence”; ideas which is often used to justify its use. We argue that there is need to interrogate the terms “Surveillance” and “Technology” more carefully if ST is to be considered as empowering for people with dementia. This tension is brought out in the accounts present in a group discussion on ST and its use. This paper argues that there needs to be an acknowledgement that the purposes of such technologies need to be regularly reviewed in order for society to keep up with the rapidly changing pace of technology and the changing needs of users.

   6. Memento for Living, Working and Caring: An ‘Archetypal Object’ for Being with Dementia

      Kathrina Dankl, Stefan Moritsch, Fritz Pernkopf, Elisabeth Stögmann, Theresa König, Sten Hanke

      Abstract

      Memento is a product family for people living with dementia, consisting of a notebook with an integrated pen, and a smartwatch. The design is the result of an extensive cross-disciplinary, multi-national development process focusing on learning from existing strategies of remembering of people with dementia and their families. Memento aims to support the mastering of an active social life by giving an overview of the day and reinforcing participation in leisure activities. It also assists in everyday scenarios such as the handling of appointments and medication intake. The project is a pitch, a speculative proposition, serving as an adaptable and expandable design concept for further contributions to the quality of life, care and wellbeing of people living with dementia.

   7. Social Robot and Sensor Network in Support of Activity of Daily Living for People with Dementia

      Sara Casaccia, Gian Marco Revel, Lorenzo Scalise, Roberta Bevilacqua, Lorena Rossi, Robert A. Paauwe, Irek Karkowsky, Ilaria Ercoli, J. Artur Serrano, Sandra Suijkerbuijk, Dirk Lukkien, Henk Herman Nap

      Abstract

      In this paper, an eHealth system is described to improve the lifestyle of people with dementia and their caregivers. In the eWare project, a social robot is integrated with a sensor network to measure ADLs with the goal to provide context relevant suggestions to the person with dementia and reduce the caregiver burden. Furthermore, the context relevant messages can remind people with dementia to perform the activities that they want and need to perform, but forgot due to a decline of brain. The developments are based on iterative co-design and in-situ evaluations with people with dementia and their (in)formal carers. The architecture configuration of eWare was tested in laboratory experimental tests to provide a final ecosystem that will be further evaluated during the pilot cases of the project.

4. Dementia Lab Ideas

   1. Frontmatter

   2. SoundscapePillow; a Design for Creating Personalised Auditory Experiences for People with Dementia

      Daniel van Pel, Maarten Houben, Berry Eggen

      Abstract

      This paper explores how we can design personalised auditory experiences for people with dementia (PwD). We introduce a new product design called the SoundscapePillow. The SoundscapePillow is a long tubular shape changing pillow that enables personalised auditory experiences for PwD by listening to (nature) soundscapes. The built-in sound system produces these soundscapes to empower the PwD to relax, to reduce agitation, and to remember experiences from the past. In combination with an accompanying App the experience can be personalised for the PwD. The concept was put in practice by conducting two small scale explorative user tests with a prototype of the concept. This paper discusses the insights gained from the design process of the SoundscapePillow, the concept itself, and what future work is needed.

   3. Feasibility of Virtual Reality in Elderly with Dementia

      G. Andringa, P. L. Nuijten, M. M. Macville, E. G. A. Mertens, J. J. Kaptein, A. C. M. Bauer, L. R. van den Doel, A. G. Roos

      Abstract

      Virtual reality (VR) is a promising tool in health care, yet its application and feasibility in people with dementia is largely unexplored. The aim of our study was to explore the feasibility of VR in people with dementia in a daycare setting by means of a) a literature study and b) a pilot study using the VR game “Balloons”. Our literature study of eight primary research articles using VR in demented elderly showed that practical and personal feasibility issues were limited. Only few subjects experience cybersickness or anxiety and practical issues are rarely encountered. Our pilot study testing the game “Balloons” in ten elderly subjects visiting a daycare center underscored our literature study. The limited number of studies available, especially with respect to fully immersive set-ups, warrants further studies for successful implementation of VR in day-care.

   4. Wijstijd, Supporting Time Orientation Designed for and with People with Dementia

      Thilly Maria Johanna Coppelmans

      Abstract

      The number of elderly living with dementia globally is expected to increase over the coming years. This project focusses on designing for people with dementia. Some common difficulties in the early stage of dementia are related to orientation in time. Difficulties such as trouble with planning or organizing, forgetting things someone has just read and a decrease in the awareness of time. Within the development process of this project, the users played an important role. This article highlights this involvement of the end users within the design process and the design decisions made from this involvement. The result of this project is the Wijstijd. It focuses on the problems surrounding time orientation for people with dementia in the early stages. The project is a graduation project at the University of Technology, Eindhoven.

   5. Prevention of Drug Intake Mistakes Through a Medication Control System for Elders

      Diana Herrera-Hidalgo, Aline Gonzalez-Moreno

      Abstract

      This project seeks to contribute to the health and well being of adults, through a comprehensive system that helps them have better control over the consumption of their medications. To achieve this, a multifunctional product is proposed; that stores, orders and doses the drugs; and that alerts users at the time they should be taken, while helping to keep track of their consumption. This in order to reduce the probability that users have failures in the consumption of their medications and that they suffer from side effects that come with this, and achieve better control over their treatment.

   6. REsilience Monitor for INformal Caregivers in Dementia (REMIND): Digital Monitoring of Informal Caregivers Wellbeing to Prevent Crises

      Dorien L. Oostra, Minke S. Nieuwboer, Marcel G. M. Olde Rikkert, Marieke Perry

      Abstract

      Societal dependency on informal care for people with dementia will grow. Informal caregiving causes a considerable burden on caregivers, often a direct reason for crisis admission of the person with dementia. Close monitoring the wellbeing of caregivers and early intervening may prevent crisis admissions. Therefore, our aim is to develop a user-friendly application for informal caregivers and a dashboard for case managers to monitor wellbeing and resilience of the caregivers to provide timely support and prevent crises. A human centered design method was used to identify wishes and needs. End users invited to participate were informal caregivers and healthcare professionals from different disciplines. Experts were researchers, clinicians, innovation experts and application designers. Three end user meetings and multiple expert sessions took place. Wishes and needs were identified during the first end user session. During a second meeting functionalities of the application were discussed. It emerged to ask questions frequently to assess deterioration of caregiver’s wellbeing. During a third meeting, concept screens of the application and dashboard were presented and discussed. Questions were reviewed covering the topics: social support, reciprocity, burden/competence, mood, own activities, person with dementia, and small crises. End users indicated they want to fill in approximately seven questions per week. Several challenges will be faced: making the application and dashboard easy to use, useful in practice and tailor-made. This methodological approach will result in a product that best meets the needs and wishes of caregivers and case managers in order to prevent crises.

   7. Babbelbord: A Personalized Conversational Game for People with Dementia

      D. S. Nazareth, C. Burghardt, A. Capra, P. Cristoforetti, W. Lam, J. B. van Waterschoot, G. J. Westerhof, K. P. Truong

      Abstract

      We present a demonstration of the board game named “Babbelbord” that stimulates narrative reminiscence in a novel interactive, personalized and entertaining way for people with dementia. Narrative reminiscence is part of reminiscence therapy which is often used in dementia care as it reduces neuropsychiatric symptoms, and therefore improves the quality of life for people with dementia. Stimulating narrative reminiscence entails communicating personal memories with others without intent or evaluation. The Babbelbord game is a newly developed board game that was based on an old-fashioned game that is familiar to people with dementia. The purpose of the Babbelbord game is to reconnect older adults with dementia to their relatives and friends by stimulating narrative reminiscence with a personalized game question approach. The Babbelbord game provides interactive and entertaining conversation starters in a gamified way between people with dementia and their relatives. In this paper, we describe and demonstrate how the Babbelbord was designed to offer an engaging and gamified user experience, tailored for older adults affected by dementia.

   8. Seven Ways to Foster Interdisciplinary Collaboration in Research Involving Healthcare and Creative Research Disciplines

      Daan Andriessen, Marieke Zielhuis, Kees Greven, Wilke van Beest, Berit Godfroij, Remko van der Lugt

      Abstract

      Making design work in the field of dementia requires interdisciplinary research. However, obstacles are likely to occur when healthcare and creative researchers work together. Analyzing the startup phase of ten interdisciplinary projects in the field of dementia, overweight and loneliness we found seven strategies to overcome these barriers: use boundary brokers, combine theory, combine research approaches, organize for collaboration, joint activities, separate activities, and use artefacts. As many dementia research projects involve exploring new products and technologies, particularly the use of artefacts might be an interesting strategy to foster the collaboration of healthcare and creative research disciplines.

5. Backmatter