Codesingning communication in dementia: Participatory encounters with people with dementia and their families towards personalised communication strategies

摘要

The journey through dementia affects not only the people diagnosed, but it also has a profound impact on those around them. Known ways of communicating progressively become unsatisfactory, leading to vicissitudes and challenges in the maintenance of social relationships, which are, in turn, considered vital to the well-being of people with dementia. Gradually, dementia, and particularly Alzheimer's disease, interferes with people's independence in everyday activities. Hence dementia care inevitably focuses on the daily necessities, such as feeding and hygiene, often leaving little space and energy for finding ways to communicate in alternative and meaningful ways. In familial contexts this is overloaded by the emotional charge of realising the changes in communication, and many times by the lack of sensitivity to deal with these changes.;This doctoral research addresses the difficulty of communicating with and relating to people living with dementia, and offers designed opportunities for connecting with them. It adopts a personalised approach that attends to the uniqueness and idiosyncrasies of people with dementia and their close social circle, who are involved in this research as participants, to explore how design can enable them to develop personalised strategies to communicate, with a special focus on leisure and entertainment. Strongly influenced by the person-centred dementia care values, the sensitivity and respect for personhood of people with dementia and the attention to the maintenance of communication and social relationships, this research uses design practice as the main form of inquiry, driven by ethical and aesthetic concerns and an emphasis on empathy as a way to relate to participants and discern their reality. Research activities employ ethnographic methods such as observation and interviews, as well as design interventions and participatory design events, to get a deeper comprehension of the experience of dementia, engage people with dementia and their families in the design process, and understand their experiences of participation and use.;The research initiated with a preliminary observational study that took place in two care institutions hosting people with dementia, and subsequently invited people with dementia and their families to take part in the research, with the support of healthcare professionals. As a result of this process, several artefacts, either personalised or designed from scratch, were produced and delivered to the participating families. In parallel, dementia care literature was interpreted from a designer perspective and transposed into the design field, which yielded a set of considerations to inform and inspire the work of design researchers and practitioners working for and with people with dementia. Posteriorly, family members and healthcare professionals were interviewed in order to evaluate the processes and products that emerged from their collaboration, disclosing significant learnings about the value of the participation of people with dementia and their families in the codesign process, the experiences of use of the artefacts both in familial and institutional contexts, and the relevance of personalisation.;Main findings revealed that it is possible to codesign with people with dementia and their families, through adapting the process and activities to their abilities, preferences and needs, and that this involvement can be satisfactory and beneficial. In addition, the designerly analysis of dementia care literature can be a valuable source of inspiration and scientific information for design to contribute to the well-being for the person with dementia. However, to ensure this positive experience it is crucial to provide more guidance on the personalisation process and use at home. Considerations and recommendations to address this issue are also outlined and discussed. In overall, there is space for design to serve people with dementia and their social circle, not only through designing for but also through designing with them.