Living with dementia in regional Australia: The experience of acute care hospital management from the carer's perspective

Abstract

Introduction: Family carers play a crucial role in dementia care. As the condition progresses, people with dementia become increasingly dependent on their carers for all areas of daily living. The risk of carer burnout is significant. One of the more stressful events for family carers is when hospital admission is required for the person they care for. Living in regional Australia adds complexity to the experience. Hospital and health services in regional Australia could use a greater understanding of the issues associated with hospital care to inform patient and carer management, improve outcomes for this population and support the goal of ‘ageing in place’. Objective: To explore the experience of carers of people with dementia in regional Australia when hospital care or treatment was required for the person they provide care for. Design: Six family carers living in regional Australia participated in this interpretative phenological study. Individual, semistructured interviews were held and transcribed verbatim shortly after. Data analysis occurred via three key processes: reading and highlighting, coding and grouping, which yielded the major themes and subthemes of the study. Findings: Three major themes and nine subthemes emerged from data analysis. The major themes were: (i) support and supply of specialist care; (ii) travel needs and negotiations; and (iii) empathy and experience make a difference. Discussion: Findings from this study highlight aspects of care that healthcare providers can address to improve outcomes for patients with dementia and their carers. Carers need opportunities to seek clarification and provide input on care plans. Good communication, involvement and relationship building between healthcare staff and carers are vital to achieving optimal patient outcomes. Staff training supporting understanding of appropriate dementia care is essential for improved patient and carer outcomes. Conclusion: Factors related to regional location, including lack of specialist care and support, compound carers' challenges. Healthcare provider education on dementia care and dementia-friendly processes in hospitals will support optimal patient and carers outcomes.