Understanding the role of agency in the navigation of regional dementia care and support service pathways

Abstract

Introduction: Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways. Methods: Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens’ Theory of Structuration which considered the carers’ intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. Findings: Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers’ efforts. Conclusions: Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.