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      The Value of Including People with Dementia in the Co-Design of Personalized eHealth Technologies

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          Abstract

          Background: In this article, we discuss the benefits and implications of the shift from a user-centered to a co-creation approach in the processes of designing and developing eHealth and mHealth solutions for people with dementia. To this end, we illustrate the case study of a participatory design experience, implemented at the REMIND EU Project, Connected Health Summer School, which took place in June 2018 at Artimino (Italy). Objectives: The initiative was intended to reach two objectives: (1) help researchers specializing in a variety of fields (engineering, computing, psychology, nursing, and dementia care) develop a deeper understanding of how individuals living with dementia expect to be supported and/or enabled by eHealth and mHealth technologies and (2) prevent the tendency to focus on the impairments that characterize dementia at the expense of seeing the individual living with this condition as a whole person, striving to maintain a life that is as fulfilling as possible. Method: The Connected Health Summer School is an annual multidisciplinary training program, organized in collaboration with the REMIND EU Project, designed for early-stage researchers interested in the development of new eHealth and mHealth services and apps. For the 2018 program edition, REMIND end user partner Novilunio invited two members of the Irish Dementia Working Group to deliver keynote lectures, and engage in participatory workshops to facilitate the creation of digital technology applications based on their specific real-life needs, values, and expectations. Their involvement as participants and experts was aimed to give a clear message to early-stage researchers: a true personalized approach to eHealth and mHealth solutions can only emerge from a highly reflective and immersive appreciation of people’s subjective accounts of their lived experience. Results/Conclusions: The Connected Health Summer School early-stage researchers developed 6 app mock-ups based on their discussions and co-creation activities with the two experts with dementia. The reflections on this experience highlight a number of important issues that demand consideration when undertaking eHealth and mHealth research, co-design, and development with and for people with dementia. The evolution in design research from a user-centered approach to co-designing should pave the way to the development of technologies that neither disempower nor reinforce stigma, but instead provide a reliable support to living a life as active and meaningful as possible after a diagnosis of dementia. To this end, the motto of the peak global organization of people with dementia, Dementia Alliance International, says it all: “See the person and not the dementia.”

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          Most cited references 18

          • Record: found
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          Impact of a patient-centered, computer-based health information/support system

           D Gustafson (1999)
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            Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

            This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.
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              • Record: found
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              Probes, toolkits and prototypes: three approaches to making in codesigning

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                Author and article information

                Journal
                DEM
                Dement Geriatr Cogn Disord
                10.1159/issn.1420-8008
                Dementia and Geriatric Cognitive Disorders
                S. Karger AG
                978-3-318-06498-8
                978-3-318-06499-5
                1420-8008
                1421-9824
                2019
                July 2019
                27 June 2019
                : 47
                : 3
                : 164-175
                Affiliations
                aAssociazione Novilunio Onlus, Padua, Italy
                bComputer Science Research Institute, Ulster University, Belfast, United Kingdom
                cI+ SRL, Florence, Italy
                Author notes
                *Cristian Leorin, President, Associazione Novilunio Onlus, Viale Svezia, 16, IT–35020 Ponte San Nicolò, Padua (Italy), E-Mail cristian.leorin@novilunio.net
                Article
                497804 Dement Geriatr Cogn Disord 2019;47:164–175
                10.1159/000497804
                31247622
                © 2019 S. Karger AG, Basel

                Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                Page count
                Figures: 9, Tables: 3, Pages: 12
                Product
                Self URI (application/pdf): https://www.karger.com/Article/Pdf/497804
                Categories
                Original Research Article

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