What is intended by the term “participation” and what does it mean to people living with dementia? A conceptual overview and directions for future research

Abstract

Policy continues to emphasise the importance of wellbeing in dementia. However, there is a vital need for psychosocial interventions that can promote positive outcomes to enhance “living well with dementia”. Our developing understanding of what people living with dementia report as being important to them, has resulted in new interpretations of what constitutes wellbeing including constructs such as “growth”, “purpose” and “participation”. These exciting and important constructs are not currently captured by outcome measures within dementia research. This limits our understanding of the value of psychosocial interventions. This paper explores the concept of participation and how continued participation in social life can make a difference to the rights of people living with dementia as citizens. We will firstly consider why participation is important for how we might measure outcomes in dementia research and care. Secondly, we will explore how we might measure participation. Finally, we will consider the value of participation as a psychosocial outcome in future research.

A Novel Approach to Support the Use of Visual Methods when Researching with People Living with Dementia

“…Novel methods such as these would not be appropriate for all dementia research as they are labour intensive, interpretive, and subjective, highlighting the challenges when attempting to combine creative approaches with methodological rigour. Further research is required in the development of new ways to capture meaningful outcomes when researching with people with dementia which is underway (Smith et al, 2022). Many existing methods rely on self-report and raise questions regarding how certain domains may be measured when they may not be easily articulated, communicated, or indeed remembered.…”

“…This means that reflection and self-report of the past month or even week can be challenging and misremembered, and it is vital that researchers are aware of this. Nevertheless, despite an increasing interest in the active participation of people living with dementia in research, there remains little to no new knowledge on the most appropriate ways to achieve this, although this is now changing (Beresford-Dent et al, 2022; Smith et al, 2022). In order to meaningfully include the views, feelings, and opinions of people with dementia that are sensitive and appropriate, the methods underlying research studies still require careful attention.…”