Dementia Friendly Communities: Micro-processes and practices observed locally in Queensland Australia

Abstract

Having the choice to stay living in one's home and community for as long as possible is a desire of people living with dementia. Yet, for many, this is not a reality due to a lack of appropriate support, unsuitable housing and built environments, social exclusion, and stigma. The global movement called Dementia Friendly Communities aims to address such barriers and bring about positive change. At the local place-based level, Dementia Friendly Community initiatives are typically planned and implemented by committees, yet little is known about how they operate to enact Dementia Friendly Community principles. Using micro-ethnography and a case study approach, two Australian – Queensland Dementia Friendly Community committees and their activities were studied to better understand implementation at the local level. This involved 16 semi-structured interviews, participant observation and field notes identifying goals, approaches, and tensions. While both committees showed the capacity to raise awareness of issues impacting people living with dementia, there were substantial differences in the implementation of the key Dementia Friendly Community principle of inclusion of people living with dementia and carers. Key differences were the way people living with dementia were positioned and the part they were expected to play in committees, whether they were empowered and valued or tokenistically included yet not listened to. Three aspects of practice are central to more meaningful inclusion: engagement, power-sharing, and leadership. Local action groups directed and led by people living with dementia and their carers, with the support of key local people and organizations, help to progress Dementia Friendly Communities locally.