Ebook: Dementia, Design and Technology

This anthology answers an increasing need to understand design that supports the daily life of people with dementia. The need parallels an increasing interest in design for life environments and technology among architects, designers, engineers, social scientists and those responsible for housing and social and health care planning. As the number of people afflicted by this syndrome increases, the importance of well-designed technological applications to their well-being also grows, as well as for the wellbeing of their relatives and carers.

With this book we aim to support the emerging research and development around this topic, which has stressed innovation, participation in the design process, as well as technical competence and the physical environment. But our main focus in this book has been to understand the person and his or her subjective needs and desires rather than asking how to manipulate the behaviour of the person affected by dementia. This is our way to make their voice heard. Our goal as editors is to provide a collection of articles which draw a balanced picture of how to utilise the habits, preferences and various abilities of people with dementia in the design process and how to take into account their disabilities. We hope that this book increase the understanding of the needs and desires of people with dementia and the way this understanding can promote and improve their involvement in design the processes of assistive technologies and other technological appliances.

To conclude, it is time to get involved, and there are both methods and concepts to be used in doing so. In 2006 the number of people with dementia was estimated to be 5.4 million in the European Union member states and this number is expected to double by 2040. According to Alzheimer's Disease International expert panel, the global figure of people with dementia was set at over 24 million in 2005, and this figure is expected to double every twenty years. The challenges of everyday life for these individuals are shared by many. Even if we are aware of the limitations of technology in helping this group of people, it is easy to agree that there is an urgent and very obvious need to ensure that these people get their fair share of the technological development.

The authors are all engaged in the field of design and dementia in the Nordic countries, the United Kingdom and Austria. During more than a year of preparations they have contributed to the result and we hope that their work will expand the interest also among colleges in neighbouring research areas and for students and other persons who want to improve their knowledge. Producing an international anthology also requires editing, linguistic and other work with the manuscript. We would like to thank Kristiina Saarikalle, Eileen Deaner and Mark Phillips for their efforts and especially Academy of Finland, Lund University, Sweden and IOS Press for making this book possible.

Helsinki and Stockholm in September 2008

Päivi Topo and Britt Östlund, editors

This book is about involving people with dementia in the development of design and technology and, as such, it meets one of the needs we all have, which is to be taken seriously and listened to. The editors' ambition is to take up the challenge of sharing expertise in involving people with dementia as users in the design process. Their aim is to increase the understanding of the subjective needs of people with dementia and the way this understanding can promote and improve their involvement in the design process.

This chapter presents and reflects on recent findings on how people with dementia experience and try to manage their daily lives on their own initiative, including their use of technology, and possible consequences for design are discussed. Research has showed that common activities of daily life may have very profound and individually different meanings in the experienced world of people with dementia. It is also argued that if we are open to expressions of awareness in the context of concrete, daily life issues, we are likely to gain information on how the person with dementia perceives his or her situation. People with dementia have been found to use a variety of self-initiated strategies – spontaneous and planned – in individual manners to meet changes and difficulties in their daily lives. These aspects could be taken as a point of departure in support and design, as they build on what is well-known and intuitive rather than on cognitive capacity. Finally, it is proposed that everyday technology can be very important in the lives of people with mild-stage dementia, although their overall use of technology decrease and problems are common.

This article explores the way in which television viewing contribute to a sense of coherence, in the salutogenic way of emphasising the healthy parts of a person. Participatory observations were carried out at a department for people with dementia who watched TV in the common TV room. Previous research points at TV viewing as an important routine in everyday life and as an active occupation as opposed to assumptions about TV viewing being passive. This study confirm these results and shows that television viewing contributes to keep up with routines in an unproblematic way. TV viewing has a role in generating communication and shared experiences from what persons jointly watch. This communication is recommended to be developed as a part of the caring strategy. Programme content can also be developed to better fit the needs and demands of old viewers with dementia.

The aim of this article is to present a model of dementia friendly environments. This model is based on the concept of affordances which refers to how the environment provides positive or negative possibilities for action and how these possibilities are actualised. By environment we mean both physical and psychosocial aspects of living environment. We present criteria for environment which is enabling and supports personhood and divide these criteria under five aspects. Because people with moderate and severe dementia are dependent on the people assisting and caring for them we present a model how the moderating role of carers and the physical and material environment are intertwined. At the end of the paper we present our empirical findings on how the features of environment and moderating role of carers are associated with wellbeing of people with dementia.

The aim of this paper is to investigate how universal design principles can be applied to design for people with memory problems or dementia. We present design of a multimedia product for entertainment as an example of how user requirements of people with dementia were taken into account in the design process and how the decisions taken during the design process were associated to universal design principles. According to an assessment study the multimedia product called Picture Gramophone succeeded in meeting the needs of people with dementia when they were visiting dementia day care centre. We conclude that universal design principles are useful when designing technology and environment for people with memory problems or dementia but they need to be combined with dementia specific knowledge. Involvement of people with dementia is essential when designing such products.

This chapter reflects on some of the lessons that we have learnt over the last few years exploring the design of assistive technology for people with dementia. The key message is the importance of involving people with dementia and their carers in the design process. Such user engagement is crucial in order to highlight their needs, and to guide the design and development process to ensure effective equipment evolves. The chapter discusses some of the issues that arise when working with people with dementia in this way. It goes on to show how the engineering design process needs to be adapted, both to ensure effective designs, and to ensure that user engagement doesn't lead to ethical problems. The chapter also considers specific design techniques which have been found to be very useful such as Wizard-of-Oz testing, the use of carer emulation, as well as techniques that can help the design of devices that are very intuitive to operate. The impact of emotional memory on design solutions, and the desire to empower users through the use of technology, are also both discussed. Several examples from our own work are provided to illustrate all these discussions. The chapter concludes with an encouragement to other designers, that their skills have an important role to play in assisting people with dementia.

The contribution at hand explores the nature, scope and limits of ethical counselling in technology research and development settings in which the target group consists of frail old persons with cognitive impairments. In this paper, ethical counselling is understood as an activity consisting of elements of peer review, supervision and consulting. A central task of an ethical counsellor in a design setting that involves older people with cognitive impairments is to increase the designers' awareness of the ethical dimensions inherent in their work. The paper provides reasons for adopting a systematic approach to ethics and an ethical counsellor in technology design projects that cooperate with vulnerable users and presents frameworks for the assessment of emerging ethical questions.

This chapter describes research in and development of more user-friendly rest rooms which are equipped with intelligent modules based on the Ambient Intelligence (AmI) paradigm. This enables the novel rest room prototypes to partly adapt automatically to the individual needs of the person who is currently using them. The three main target groups were older people with functional limitations, people with disabilities and carers. The iterative design process applied was strongly user centred and actively involved vulnerable people in the area of intimate needs. Thus, particular care was given to consider the taboo effect and the protection of vulnerable users. Five iteratively improved rest room prototypes were designed and evaluated in a laboratory environment. A reduced prototype was also tested successfully in a day activity centre over a period of 2 months with 29 primary and 12 secondary users. It was found that the intelligent toilet prototypes were useful and able to increase the autonomy and independence of people with functional limitations. From the point of view of an engineer, the continuous involvement of users was considered to be extremely essential and necessary in this area of intimate needs. Although there was no direct involvement of people with dementia, several comments and findings of relevance for them were collected, for example, the reduction of cognitive load during use of the intelligent rest room. A basic version of the new toilet system was put on the market in 2006.

Many older people (over 80 years) are excluded from the use of new information and communication technology (ICT) because of the prevalence of mild to moderate memory problems in this group. This is a factor which contributes to the tendency for them to become socially isolated and mentally under-stimulated and inactive, a situation which may exacerbate dementia and associated cognitive impairment. To understand any group of users, the design team needs to get to know them. Spending time with members of this particular group, and especially observing and participating in their normal social activities, provides many unexpected insights on which to base design decisions. Older people with mild to moderate cognitive impairment often cannot learn new skills, or at least cannot retain them. However, longstanding knowledge generally remains. For this reason, a design based around an interaction metaphor from earlier technology can prove effective. We introduce the MAMA (Mobile Augmented Memory Aid) project, aimed at older users with mild to moderate cognitive impairment. We describe the hardware and software prototypes that have resulted so far. We go on to present five design principles developed during the project, and suggest that these may serve as a general approach to designing technology for older people. We indicate future work and how our approach can be applied more generally.