Access to dementia care and support services in rural Victorian communities: the experiences of people with dementia and their carers

Dementia is a National Health Priority Area in Australia, with the number of people with dementia projected to rise to nearly 400,000 by 2020. In Australia, 70% of people with dementia live in the community, often cared for by family and friends. It is important that both people with dementia and their carers have access to care and support services appropriate for their respective needs. Access to care and support services can have a greater impact on those living in rural communities. This study examined the experiences of rural Australians with dementia and their carers accessing care and support services. It is an under-researched area with little known about the dimensions of access, the pathways taken to access services, and the impact of caring on caregivers. This study aimed to generate a holistic understanding of the experiences of people with dementia and their carers (the dyad) when accessing care and support services in rural Victorian communities. The voice of people with dementia is often not heard, so the study aimed to address this shortcoming. A collective case study design was adopted using a social constructionist perspective and a mixed method approach. Narrative inquiry was the qualitative method employed to gather detailed stories of the dyads’ experiences. The quantitative method included the administration of survey tools to describe participants’ characteristics and augment qualitative findings. Seven case studies were compiled from thematic analysis of the data and descriptive statistics. These case studies described the dyads and their experiences accessing dementia services in rural Victorian communities. An initial Rural Dementia Access Framework was constructed from a review of existing literature. Findings from the data collected in this study contributed to the expansion of this framework to include three key elements identified as important for people with dementia to access care and support services. The “access dimensions” element prioritises a person/dyad-centred approach to access that includes a set of revised access dimensions to guide care and support service planning and delivery, while also considering the person with dementia, the carer, and their needs as they change - their context. The “access pathways” element of the framework acknowledges both the informal as well as the formal pathways taken to access services, and the care and support service planning and delivery needed to identify and support the points of access. The “social context” element considers the social factors that can impact on access from the individual and community perspective and includes availability of social support and social perspectives of dementia. The findings from this study support the notion that rurality can influence experiences in accessing services, although rurality based on location alone does not define the experience. Access by people with dementia and their carers to necessary care and support services requires a holistic, context-specific approach. To achieve this, policymakers, care and support service providers within communities, and members of the community need to collaborate to ensure an approach that considers the key elements within the Rural Dementia Access Framework.