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      Active Involvement of People with Dementia: A Systematic Review of Studies Developing Supportive Technologies

      research-article
      a , b , * , a , b , a , b , b , a , c
      Journal of Alzheimer's Disease
      IOS Press
      Co-design, dementia, patient participation, supportive technology

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          Abstract

           Although there are promising benefits of supportive technology in dementia care, use of these technologies is still limited. It is challenging for researchers and developers in this field to actively involve people with dementia in development. This review updates and builds on existing knowledge by including a contemporary and relevant perspective. This perspective was gained by including search words and search databases from the field of Human Computer Interaction (HCI) and Design, as these fields were expected to supply novel insights in the complex task of actively involving people with dementia in developing supportive technologies. A total of 49 out of 3456 studies were included which describe the development of a great variety of technologies. Often people with dementia were involved in the generative or evaluative phase of the development. Interviews and observations were most commonly used methods. In seven articles the people with dementia were co-designers. This literature review reflects that people with dementia can influence the development of technology in regards to content, design, and even the initial idea, although the impact on how they experience their own involvement remains largely unknown. There is a lack of specific knowledge on appropriate methods and materials for active involvement of people with dementia in supportive technology development, even when including articles from the field of HCI and Design. Future research is needed to further appreciate and improve the desired role of people with dementia in meaningful technology development.

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          Most cited references41

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          Probes, toolkits and prototypes: three approaches to making in codesigning

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            Usability and acceptability of technology for community-dwelling older adults with mild cognitive impairment and dementia: a systematic literature review

            Background The objective of this review was to obtain an overview of the technologies that have been explored with older adults with mild cognitive impairment and dementia (MCI/D), current knowledge on the usability and acceptability of such technologies, and how people with MCI/D and their family carers (FCs) were involved in these studies. Materials and methods Primary studies published between 2007 and 2017 that explored the use of technologies for community-dwelling people with MCI/D were identified through five databases: MEDLINE, PsycINFO, Embase, AMED, and CINAHL. Twenty-nine out of 359 papers met the criteria for eligibility. We used the Mixed Methods Appraisal Tool for quality assessment. Results A wide range of technologies was presented in the 29 studies, sorted into four domains: 1) safe walking indoors and outdoors; 2) safe living; 3) independent living; and 4) entertainment and social communication. The current state of knowledge regarding usability and acceptability reveals that even if researchers are aware of these concepts and intend to measure usability and acceptability, they seem difficult to assess. Terms such as “user friendliness” and “acceptance” were used frequently. User participation in the 29 studies was high. Persons with MCI/D, FCs, and staff/other older adults were involved in focus groups, workshops, and interviews as part of the preimplementation process. Conclusion Research regarding technologies to support people with MCI/D seems optimistic, and a wide range of technologies has been evaluated in homes with people with MCI/D and their FCs. A major finding was the importance of including people with MCI/D and their FCs in research, in order to learn about required design features to enhance usability and acceptability. Surprisingly, very few studies reported on the consequences of technology use with regard to quality of life, occupational performance, or human dignity.
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              Seven lessons for interdisciplinary research on interactive digital health interventions

              Research and development for interactive digital health interventions requires multi-disciplinary expertise in identifying user needs, and developing and evaluating each intervention. Two of the central areas of expertise required are Health (broadly defined) and Human–Computer Interaction. Although these share some research methods and values, they traditionally have deep differences that can catch people unawares, and make interdisciplinary collaborations challenging, resulting in sub-optimal project outcomes. The most widely discussed is the contrast between formative evaluation (emphasised in Human–Computer Interaction) and summative evaluation (emphasised in Health research). However, the differences extend well beyond this, from the nature of accepted evidence to the culture of reporting. In this paper, we present and discuss seven lessons that we have learned about the contrasting cultures, values, assumptions and practices of Health and Human–Computer Interaction. The lessons are structured according to a research lifecycle, from establishing the state of the art for a given digital intervention, moving through the various (iterative) stages of development, evaluation and deployment, through to reporting research results. Although our focus is on enabling people from different disciplinary backgrounds to work together with better mutual understanding, we also highlight ways in which future research in this interdisciplinary space could be better supported.
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                Author and article information

                Contributors
                Role: Handling Associate Editor
                Journal
                J Alzheimers Dis
                J. Alzheimers Dis
                JAD
                Journal of Alzheimer's Disease
                IOS Press (Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands )
                1387-2877
                1875-8908
                24 May 2019
                18 June 2019
                2019
                : 69
                : 4
                : 1041-1065
                Affiliations
                [a ]Vilans, Centre of expertise Long-term care , Utrecht, The Netherlands
                [b ]Human Technology Interaction, University of Technology , Eindhoven, The Netherlands
                [c ]Tilburg University , TIAS School for Business and Society, Tilburg, The Netherlands
                Author notes
                [* ]Correspondence to: Sandra Suijkerbuijk, Vilans, Centre of expertise Long-term care, PO Box 8228 3503 RE Utrecht, The Netherlands. E-mail: s.suijkerbuijk@ 123456vilans.nl .
                Article
                JAD190050
                10.3233/JAD-190050
                6597993
                31156158
                19d4d8ac-07b5-4bd8-a4e7-e4ca8f1ee038
                © 2019 – IOS Press and the authors. All rights reserved

                This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 8 April 2019
                Categories
                Research Article

                co-design,dementia,patient participation,supportive technology

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