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

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."

Keywords: Co-creation; Co-design; Dementia; Participatory design; Patient engagement; Person-centered approach; eHealth; mHealth.