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R�W�K�F�D�R�U�S�S�D�E�D�O�J�Q�L�Y�L�O�Q�H�Y�L�U�G�Q�J�L�V�H�G�D�D�L�W�Q�H�P�H�G�U�R�I�Q�J�L�V�H�'� W�[�H�W�Q�R�F�U�L�H�K�W�G�Q�D�D�L�W�Q�H�P�H�G�K�W�L�Z�H�O�S�R�H�S�H�Y�O�R�Y�Q�L� �$�3�$�Q�R�L�V�U�H�Y�G�H�K�V�L�O�E�X�S�U�R�I�Q�R�L�W�D�W�L�&� Brankaert, R. (2016). Design for dementia : a design-driven living lab approach to involve people with dementia and their context. Eindhoven: Technische Universiteit Eindhoven. �H�W�D�G�G�Q�D�V�X�W�D�W�V�W�Q�H�P�X�F�R�'� �G�H�K�V�L�O�E�X�3� �Q�R�L�V�U�H�9�W�Q�H�P�X�F�R�'� �V�U�H�E�P�X�Q�H�P�X�O�R�Y�G�Q�D�H�X�V�V�L�H�J�D�S�O�D�Q�L�I�V�H�G�X�O�F�Q�L�G�U�R�F�H�5�I�R�Q�R�L�V�U�H�9�V�D�Q�Z�R�Q�N�R�V�O�D�)�'�3�V�¬�U�H�K�V�L�O�E�X�3� �Q�R�L�W�D�F�L�O�E�X�S�V�L�K�W�I�R�Q�R�L�V�U�H�Y�W�Q�H�P�X�F�R�G�H�K�W�N�F�H�K�F�H�V�D�H�O�3� H�E�Q�D�F�H�U�H�K�7�Z�H�L�Y�H�U�U�H�H�S�H�U�R�I�H�E�G�Q�D�Q�R�L�V�V�L�P�E�X�V�Q�R�S�X�H�O�F�L�W�U�D�H�K�W�I�R�Q�R�L�V�U�H�Y�H�K�W�V�L�W�S�L�U�F�V�X�Q�D�P�G�H�W�W�L�P�E�X�V�$�µ� H�O�S�R�H�3�G�U�R�F�H�U�I�R�Q�R�L�V�U�H�Y�G�H�K�V�L�O�E�X�S�O�D�L�F�L�I�I�R�H�K�W�G�Q�D�Q�R�L�V�U�H�Y�G�H�W�W�L�P�E�X�V�H�K�W�Q�H�H�Z�W�H�E�V�H�F�Q�H�U�H�I�I�L�G�W�Q�D�W�U�R�S�P�L� H�K�W�W�L�V�L�Y�U�R�Q�R�L�W�D�F�L�O�E�X�S�H�K�W�I�R�Q�R�L�V�U�H�Y�O�D�Q�L�I�H�K�W�U�R�I�U�R�K�W�X�D�H�K�W�W�F�D�W�Q�R�F�R�W�G�H�V�L�Y�G�D�H�U�D�K�F�U�D�H�V�H�U�H�K�W�Q�L�G�H�W�V�H�U�H�W�Q�L� �H�W�L�V�E�H�Z�V�U�H�K�V�L�O�E�X�S�H�K�W�R�W�,�2�'� �Z�H�L�Y�H�U�U�H�H�S�U�H�W�I�D�Q�R�L�W�D�F�L�O�E�X�S�H�K�W�I�R�V�Q�R�L�V�U�H�Y�H�U�D�I�R�R�U�S�\�H�O�O�D�J�H�K�W�G�Q�D�Q�R�L�V�U�H�Y�U�R�K�W�X�D�O�D�Q�L�I�H�K�7�µ� H�J�D�S�G�Q�D�H�X�V�V�L�H�P�X�O�R�Y�H�K�W�J�Q�L�G�X�O�F�Q�L�U�H�S�D�S�H�K�W�I�R�W�X�R�\�D�O�O�D�Q�L�I�H�K�W�V�H�U�X�W�D�H�I�Q�R�L�V�U�H�Y�G�H�K�V�L�O�E�X�S�O�D�Q�L�I�H�K�7�µ� �V�U�H�E�P�X�Q� Q�R�L�W�D�F�L�O�E�X�S�R�W�N�Q�L�/� V�W�K�J�L�U�O�D�U�H�Q�H�*� V�U�H�Q�Z�R�W�K�J�L�U�\�S�R�F�U�H�K�W�R�U�R�G�Q�D�V�U�R�K�W�X�D�H�K�W�\�E�G�H�Q�L�D�W�H�U�H�U�D�O�D�W�U�R�S�F�L�O�E�X�S�H�K�W�Q�L�H�O�E�L�V�V�H�F�F�D�H�G�D�P�V�Q�R�L�W�D�F�L�O�E�X�S�H�K�W�U�R�I�V�W�K�J�L�U�O�D�U�R�P�G�Q�D�W�K�J�L�U�\�S�R�&� �V�W�K�J�L�U�H�V�H�K�W�K�W�L�Z�G�H�W�D�L�F�R�V�V�D�V�W�Q�H�P�H�U�L�X�T�H�U�O�D�J�H�O�H�K�W�\�E�H�G�L�E�D�G�Q�D�H�V�L�Q�J�R�F�H�U�V�U�H�V�X�W�D�K�W�V�Q�R�L�W�D�F�L�O�E�X�S�J�Q�L�V�V�H�F�F�D�I�R�Q�R�L�W�L�G�Q�R�F�D�V�L�W�L�G�Q�D� �K�F�U�D�H�V�H�U�U�R�\�G�X�W�V�H�W�D�Y�L�U�S�I�R�H�V�R�S�U�X�S�H�K�W�U�R�I�O�D�W�U�R�S�F�L�O�E�X�S�H�K�W�P�R�U�I�Q�R�L�W�D�F�L�O�E�X�S�\�Q�D�I�R�\�S�R�F�H�Q�R�W�Q�L�U�S�G�Q�D�G�D�R�O�Q�Z�R�G�\�D�P�V�U�H�V�8�µ� Q�L�D�J�O�D�L�F�U�H�P�P�R�F�U�R�\�W�L�Y�L�W�F�D�J�Q�L�N�D�P�W�L�I�R�U�S�\�Q�D�U�R�I�W�L�H�V�X�U�R�O�D�L�U�H�W�D�P�H�K�W�H�W�X�E�L�U�W�V�L�G�U�H�K�W�U�X�I�W�R�Q�\�D�P�X�R�<�µ� �O�D�W�U�R�S�F�L�O�E�X�S�H�K�W�Q�L�Q�R�L�W�D�F�L�O�E�X�S�H�K�W�J�Q�L�\�I�L�W�Q�H�G�L�/�5�8�H�K�W�H�W�X�E�L�U�W�V�L�G�\�O�H�H�U�I�\�D�P�X�R�<�µ� H�V�D�H�O�S�H�Y�R�E�D�H�V�Q�H�F�L�O�°�H�Q�U�H�Y�D�7�¯�H�K�W�\�E�G�H�W�D�F�L�G�Q�L�W�F�$�W�K�J�L�U�\�S�R�&�K�F�W�X�'�H�K�W�I�R�D�I�H�O�F�L�W�U�$�I�R�V�P�U�H�W�H�K�W�U�H�G�Q�X�G�H�W�X�E�L�U�W�V�L�G�V�L�Q�R�L�W�D�F�L�O�E�X�S�H�K�W�I�,� �W�Q�H�P�H�H�U�J�$�U�H�V�8�G�Q�(�H�K�W�U�R�I�N�Q�L�O�Z�R�O�H�E�Z�R�O�O�R�I� H�Q�U�H�Y�D�W�O�Q�H�X�W�Z�Z�Z� \�F�L�O�R�S�Q�Z�R�G�H�N�D�7� �W�D�V�X�W�F�D�W�Q�R�F�H�V�D�H�O�S�W�K�J�L�U�\�S�R�F�V�H�K�F�D�H�U�E�W�Q�H�P�X�F�R�G�V�L�K�W�W�D�K�W�H�Y�H�L�O�H�E�X�R�\�I�,� O�Q�H�X�W�#�V�V�H�F�F�D�Q�H�S�R� �P�L�D�O�F�U�X�R�\�H�W�D�J�L�W�V�H�Y�Q�L�O�O�L�Z�H�Z�G�Q�D�V�O�L�D�W�H�G�J�Q�L�G�L�Y�R�U�S� �Q�X�-�H�W�D�G�G�D�R�O�Q�Z�R�'� Design for Dementia A design-driven Living Lab approach to involve people with dementia and their context Rens Brankaert Design for Dementia A design-driven Living Lab approach to involve people with dementia and their context Doctoral Dissertation by Rens Brankaert Design for Dementia A design-driven Living Lab approach to involve people with dementia and their context PROEFSCHRIFT Ter verkrijging van de graad van doctor aan de Technische Universiteit Eindhoven, op gezag van rector magnifcus, prof.dr.ir. F. Baaijens, voor een commissie aangewezen door het College voor Promoties, in het openbaar te verdedigen op woensdag 2 maart 2016 om 16:00 door Rens Gerardus Antonius Brankaert geboren te Weert A catalogue record is available from the Eindhoven University of Technology Library ISBN: 978-90-386-4030-3 © Rens Brankaert, 2016 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system without permission of the author. Dit proefschrift is goedgekeurd door de promotoren en de samenstelling van de promotie commissie als volgt: Voorzitter: prof.dr.ir. M.J.W. Schouten 1e promotor: prof.dr.ir. P.H. den Ouden 2e promotor: prof.dr.ir. A.C. Brombacher leden: prof.dr. L. Chen prof.dr.ir. W.A. IJsselsteijn prof.dr. I.M.B. Bongers (Universiteit van Tilburg) prof.dr.ir. C.D. Nugent (University of Ulster) Het onderzoek dat in dit proefschrift wordt beschreven is uitgevoerd in overeenstemming met de TU/e Gedragscode Wetenschapsbeoefening. “Het leven is wat je gebeurt, terwijl je andere plannen maakt.” John Lennon in Beautiful Boy Vertaald door Acda & de Munnik in Laat me slapen Contents Chapter 1: Introduction 14 Chapter 4: Design Process & Pilot Case 72 1.1 What is dementia? 16 4.1 Value creation 72 1.2 The societal challenge of dementia 17 4.2 The design process 76 1.3 Design for people living with dementia 18 4.3 The design process in detail 78 1.4 The Innovate Dementia project 22 4.4 Pilot case study: PHYSICAL – a reminder system 84 1.5 This thesis 26 4.5 Conclusions 90 Section 1 : Setting Up The Living Lab Section 2 : Involving Business Stakeholders Chapter 2: Dementia In Review 30 Chapter 5: Involving People With Dementia In Context 96 2.1 Dementias 32 5.1 Actively involving people with dementia 98 2.2 A visual overview of the disease process 38 5.2 Vitaallicht®: study set-up 101 2.3 Involving people with dementia in research 41 5.3 Design and cultural probing 104 2.4 Interactive Experience Flow 46 5.4 Method and study set-up 106 2.5 Conclusions 51 5.5 Findings 110 5.6 Conclusions 120 Chapter 3: Living Lab Methodology 52 Chapter 6: Design & Evaluation With Business Stakeholder 126 3.1 Living Labs in the literature 54 6.1 Role of design in the Living Lab 128 3.2 Living Labs – a comparative study 57 6.2 Evaluation of the GoLivePhone® 130 3.3 Comparison of study results 61 6.3 GoLivePhone study results 134 3.4 Comparative study conclusions 66 6.4 Conclusions 142 3.5 The Innovate Dementia Living Lab 68 10 11 Section 3 : Design Insights From Research CHAPTER 9: DISCUSSION & REFLECTION 186 9.1 Conclusions 188 Cha pter 7: Design Recommendations 148 9.2 Living Lab protocol and design recommendations 190 9.3 Discussion 193 7.1 Design for dementia 150 9.4 Future outlook 199 7.2 Student design cases 154 9.5 Refection 201 7.3 Case study: Homing Compass 158 7.4 Thematic analysis 163 English Summary 205 7.5 Conclusions 169 Nederlandse Samenvatting 215 References 225 List of fgures 239 Chapter 8: Design Of A Living Lab Protocol 172 List of tables 240 Appendices 241 8.1 Setting up a refective framework 174 Curriculum Vitae 251 8.2 Refective Development 176 Acknowledgements 257 8.3 Living Lab protocol proposal 180 8.4 Discussion 184 12 13 Chapter 1: Introduction Most people I know are afraid of dementia. The quote (left), from an autobiography of a writer with Alzheimer’s, shows this fear as he describes how he experiences the onset of dementia. However, there is a long road between the frst symptoms of memory problems and the feared advanced state of dementia. In this dissertation we aim to examine dementia constructively and try to use design approaches to fnd new strategies and proposals to support those afected by the condition. In this Chapter we introduce our approach and formulate our goal of improving the quality of life of people with dementia and their caregivers. “… There was something else that spring and it was unnameable. As with all unknowns, it was unsettling (…) It was an anonymous presence, yet I could feel its uneasy cadence. My memory, which had been a sacred touchstone, was failing long before I expected. I was losing the ability to remember things important to me. I had diffculty recognizing the names of many of my plants, and even friends I saw infrequently. I was ffty-seven this year, and not eager to acknowledge that now I might be tied to a teetering mind that had begun a slow descent into silence.” - Thomas DeBaggio (2002) Chapter 1 - Introduction 15 1.1 What is dementia? 1.2 The societal challenge of dementia In order to improve the lives of people living with dementia through design and In the United Kingdom, Prime Minster David Cameron described dementia as a research we need to understand what dementia is. Dementia is the name of a national challenge, setting up three groups to improve care, creating dementia- group of diseases that afect the brain and impair cognition. The most common friendly communities, and promoting dementia research (Lin & Lewis, 2015). In forms of dementia are Alzheimer’s disease (>70%), Vascular disease (>20%), Lewy the United States, President Obama signed the National Alzheimer’s Project Act, Body Dementia (<5%) and frontotemporal dementia (<2%) in descending order establishing an Advisory Council on Alzheimer’s Research, Care, and Services (Lin of occurrence (Prince, Albanese, Guerchet, & Prina, 2014). These diseases are & Lewis, 2015). In the Netherlands the government initiated the programme “delta- progressive, and slowly but severely afect a person’s brain, and thus afect his or plan dementie” in 2013, referring to the delta-works constructed in response to her ability to live a normal life. Because Alzheimer’s disease and vascular dementia the foods of 1953, to combat dementia. They formulated three pillars: academic together account for by far the largest proportion of the dementia population research, improving dementia care and social innovations (Dutch ministery of (>90%), and because the disease processes are relatively similar, we will refer to Health Welfare and Sport, 2013). these when we use the term dementia. The main reason for these countries to set up national programs to combat Dementia afects one’s behaviour and ability to live and enjoy life. In the early stages dementia is the appalling increase of people living with dementia globally (Wimo, of the disease people will experience problems such as forgetfulness and difculty Winblad, Aguero-Torres, & von Strauss, 2003). Owing to the continued ageing of executing complex tasks. In the mid-stage of dementia short-term memory is our population, it is estimated that the number of people with dementia will double hampered, non-routine tasks are difcult and recognizing people and places every 20 years, with an estimate of about 40 million in 2020 and 80 million in 2040 becomes challenging. As the disease progresses into the later stages routine tasks are (Ferri et al., 2005; Wimo et al., 2003). In addition, national healthcare budgets per impaired, orientation in time and space is challenging and basic bodily functioning head of population tend to decrease, resulting in an even further retrenchment becomes increasingly limited (Timlin & Rysenbry, 2010). These are some general of care for people with dementia (Knapp, Iemmi, & Romeo, 2013). This places indicators of dementia. However, as every individual is diferent, the resulting additional pressure on professional care and will result in an extension of care in challenges people face are diferent as well. In dementia care this personalization is the home environment, relying on informal caregivers (Knapp et al., 2013). also referred to as Person-Centred Care. This means that the personality, character and background of a person is taken into account during the care process (Clarke, The World Alzheimer Report (2010) shows that the cost of dementia care worldwide Hanson, & Ross, 2003). This approach is seen as positive by nurses in practice; was more than US$604 billion, or 1% of aggregated global Gross Domestic Product. however, it is still not widely implemented as it challenges the still prevalent Reducing transitions into professional care environments and providing care generalist approach to dementia care (H. Ross, Tod, & Clarke, 2015). In addition, at home for as long as possible is an important strategy for containing the costs dementia is seldom experienced alone. Often a spouse or other family members of dementia care in high-income countries (Prince, Prina, & Guerchet, 2013). of a person with dementia are also burdened by care and worry (Zwaanswijk, Whereas this strategy sometimes causes problems, it does generally align with Peeters, van Beek, Meerveld, & Francke, 2013). These informal caregivers, the non- older people’s desire to live at home for as long as possible as well as with the global paid and non-professional caregivers of people with dementia, are often mentally movement towards Person-Centred Care (Clarke et al., 2003). This trend, however, and physically burdened by the progressive deterioration of the dementia patient will put further pressure on informal caregivers who already provide ∼60% of the (Etters, Goodall, & Harrison, 2008). accumulated care for people with dementia. This number is expected to increase majorly in western countries, and is already much higher in developing countries Studies often refer to people sufering from dementia, but this target group is not (Prince et al., 2013). To conclude, there is a dementia ‘food’ upon us and we see the continuously sufering; they are coping with the disease. That is why we use the term world is already preparing for this. In this dissertation we aim to contribute to this people living with dementia, relating to people with dementia and their informal global challenge from a design perspective. caregiver network. 16 Design for Dementia Chapter 1 - Introduction 17

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