Participation in research of persons with dementia and residents in long-term care facilities. A study aiming to design an approach to involve older care home residents and people living with dementia in scientific research. Research with the client, by the client.
Participation of persons living with dementia and residents in long-term care facilities in research involves collaborating (co-creation) with clients (representatives) in all phases of the research process: from setting the research agenda to co-authoring (scientific) publications and disseminating research outcomes. Participation of the public, users, and patients in scientific research is increasingly recognized as resulting in research questions that correspond with the needs of the target group, target-group focused interpretation of results, better dissemination and implementation of research outcomes. However, participation of people living with dementia and residents in long-term care, although no less important, is less developed than for other patient groups.
In this research project we aim to develop and design, in co-creation with the target group, an approach to involve older care home residents and people living with dementia in scientific research. Participatory research is a reflective and cyclical process, in which learning with and from each other is essential. The objective of participatory approaches is not merely understanding, but also change and improvement. By developing a meaningful approach for participation in research, we aim to contribute to research ‘in collaboration with’ the client, rather than solely ‘about’ the client. So that the values, lived experience and context-specific needs of clients, which are intrinsically linked to healthcare practices, are equally included in scientific research, ranging from fundamental (bio)medical to qualitative research.
