Carers: The navigators of the maze of care for people with dementia—A qualitative study

Abstract

Background Dementia is a challenge in our society, with individuals accessing services across multiple settings. Carers are navigating and delivering care services in the home. This research sought to investigate the experiences of people with dementia and their carers when transitioning home from hospital. Methods This study used a qualitative descriptive design, employing in-depth interviews with 30 carers recruited through networks known to one state branch of Alzheimer’s Australia. Emerging themes were validated in one focus group. Results During the hospital stay carers experienced a paradox: being required to deliver care yet perceiving that they were being ignored in regard to decisions about care. The time in hospital was considered by some carers to be stressful, as they were concerned about the safety of the person with dementia. Many reported that discharge home was rarely planned and coordinated. Returning home carers found re-establishing and/or accessing new services challenging, with available services often inappropriate to need. Conclusion The paradox of the care experience in the acute setting, whereby the carer was either invited, or sought, to deliver care, yet was excluded in staff decisions about that care, challenges the current communication and coordination of care. For people with dementia and their carers, there is a need for a coordinated seamless service that enables continued unbroken care and support from acute care to home. Carers also need support navigating the wide range of services available and importantly both carers and care providers may need to understand service boundaries. Recommendations This study highlights the need to acknowledge the expertise of the carer, and their need for support. Enabling a smooth discharge from hospital and support to navigate care access in the community is paramount. These experiences provide insight into gaps in service provision and modifying existing services may lead to improved experiences.