Including formal and informal caregivers in the development of Play Intervention for Dementia: a qualitative study

Abstract

Background: Play Intervention for Dementia is a practice initiative using play to help people living with dementia (PWD) experience engagements, autonomy, and cognitive stimulation. This program was developed under a participatory paradigm, with extensive contribution from formal and informal caregivers. This article describes how caregivers contributed to the practice principles, materials, and assessment during the development phase of Play Intervention for Dementia through community-based participatory research (CBPR).

Methods: Three service supervisors, 16 formal caregivers and 14 informal caregivers from the community participated in this study. Based on CBPR, the study progressed in a reflexive, iterative and collaborative way. Data were collected from diverse sources, including practice journals, observation notes and reflexive focus group interviews. Two trained qualitative researchers conducted thematic analysis on the data collected, with focus on practical skills, outcomes, and caregivers' general experience during the intervention.

Results: The therapeutic and liberating power of play was thoroughly discussed by the caregivers. They considered play as an innovative way to understand, engage, and connect with the PWD. Also, improvement in energy level, motivation and communicative capacity was observed among the PWD. The researcher and caregivers collaboratively refined and designed the protocol of Play Intervention for Dementia, adding localized principles and games to the original design.

Conclusion: Caregivers found play to be a meaningful way to engage with PWD, as it provided an equal platform for them. The intervention also enabled them to reflect upon ageing and disease at a deeper level. Caregivers have contributed significantly to the refinement and contextualisation of the intervention. The efficiency of the refined program should be further tested on a larger scale.

Keywords: Caregivers of people with dementia; Community-based participatory research; Contextualised dementia care; Play intervention for dementia.