Unfolding selfhood of the elderly with dementia through play : a community-based participatory action research (CBPAR) project

Abstract

This research aims at developing a conceptual model for informing social work and human service in dementia care that transcends the currently dominant disease and deficiency model. Focusing on selfhood among the elderly with dementia (EWD), the research investigated the application of play intervention for dementia (PID) and elucidated the relevant conceptual and practice issues. Drawing from an interdisciplinary knowledge base, this project brought together theories, empirical research, and practice wisdom to build a conceptual framework for understanding and responding to selfhood of the EWD. Three studies were conducted to achieve these objectives: Study 1: Including Service Providers in the Development of Play Intervention for Dementia (PID) This study describes how service providers, both formal and informal, contributed to the development of PID through community-based participatory research (CBPR). To balance research and action, the study progressed in a reflexive, iterative and collaborative way. Group play has been considered an effective form of intervention as it facilitated the service providers in understanding, engaging and connecting with the EWD. Play created a safe space for them to understand each other and build equal, trustworthy relationships. Improvements of the EWD in behaviours, social skills, emotional regulation and autonomy were also reported. Numerous contextualized principles and games were added to the original protocol. The inclusion of service providers has further contextualized PID and improved its influence within the community. Study 2: Can the Demented Speak? Life Narratives of the EWD Lived experience of service users is the foundation for both theory building and practice design. Adopting a narrative approach, study 2 explores life stories of five residential elderly with moderate to severe dementia, and analyzes their narratives focusing on selfhood. It was found that selfhood maintenance is not only possible in later stages of dementia, it also exists in multiple forms, including relational selfhood, performative selfhood and embodied selfhood. Although the life sphere of the residential EWD is limited, their selfhood is still influenced by cultural identities, positional suffering and intersectional marginalization. Findings from this study further complete the theoretical framework on selfhood of the EWD, and provided narrative accounts for sequential program implementation. Study 3: Implementation of PID – Participatory Action Research (PAR) PID was implemented through PAR in study 3. The study includes 7 procedures: (1) recruiting the EWD participants, (2) recruiting stakeholders, (3) collecting informed consents, (4) forming working alliance among all practitioner-researchers, (5) starting a collaborative service development cycle with the use of video-elicitation focus-group interviews, (6) using participatory video and collective manual writing to organize the knowledge, and (7) disseminating the knowledge amongst practitioner representatives from different communities. This study implemented and indigenised the PID program, and examined the selfhood framework in practice context. It was found that authentic play is a realm for aesthetic experience, and the concept “aesthetic self” was added to the original framework so as to capture the transformative power of selfhood expression of the EWD. The integration of video-based methods generated meaningful, experiential knowledge within the community, and produced useful materials for community education.