The involvement of people with dementia in the design process

To involve people with dementia in a research and design process is not an easy thing. Talking about involvement in design quickly brings one to participatory design. The methods, tools and techniques used in many existing participatory design projects offer challenges to be employed when involving people with dementia in the design process due to their cognitive and physical abilities. This PhD research project is based on insights from a series of workshops and 3 projects involving people with dementia and their network and starts with the endeavour to find a dedicated method for involvement: can a set of tools and techniques be produced that supports designers to involve people with dementia in the design process? The first chapter of this PhD research presents a series of guidelines based on participatory projects involving people with dementia but also with aphasia, amnesia (two symptoms that often occur when having dementia) and elderly. However, the end of the first chapter already hints at the fact that such a set of guidelines can never be a passe-partout for every person with dementia. Indeed, one of the main conclusions of Chapter 2 and Chapter 3 is that a more individualised way of working is needed. This individualised way of working supports the build-up of a personal relationship between the person with dementia and the designer. It is based on this personal relationship that the design decisions are collaboratively taken and ways to facilitate involvement of a person with dementia are defined, as is clear from Chapter 5. The PhD research offers 4 guiding principles to support this build-up of a relationship between the designer and the person with dementia. These guiding principles are the result of marrying the principles of person-centred care, the ruling care paradigm in dementia care, with participatory design. They support the designer in the buildup of relational expertise in order to collaborate with a person with dementia and enables designers to value and articulate both explicit and implicit shared decision-making. Next to these 4 guiding principles, the PhD research offers a set of 6 concrete actions for designers to support this relational work. These 6 concrete actions zoom in on the involvement of the carers in the design process, an essential stakeholder. The PhD research ends with a reflection on the role of designers (and how they can integrate in a care environment as an essential part of the healthcare system) and their competences (relationship building as a necessary part of a design competence).