Launching support groups for informal caregivers of people living with dementia within participatory action research

Abstract

Support groups are one possibility to empower informal carers and accordingly have spread across many countries because of their informal, inexpensive nature and because of their effectiveness. This paper aims to reflect on the viewpoints and experiences of the lessons learned from the participatory action research (PAR) conducted from 2016 to 2019. During PAR, several support groups in different regions of Estonia were launched to empower the informal caregivers. In the study, the stakeholders and researchers participated as partners and developed new knowledge and 17 support groups were launched in different regions of Estonia. In conclusion, our experiences highlighted the stakeholders’ collaboration which resulted in creating the knowledge needed to launch support groups. Based on our experience, we recommend launching support groups in countries where they do not exist yet, and to apply participatory action research.