The Experience of Hospitalisation for People Living With Dementia: A Qualitative Exploration of How Context Shapes Experiences

Introduction

Dementia has become an increasingly pressing issue in healthcare systems, and acute care settings such as hospitals have been shown to be particularly problematic for people living with dementia. People living with dementia are hospitalised at higher rates than those without and often have poor experiences and outcomes of hospitalisation. To support the evolution of hospital systems to better meet the needs of people living with dementia, it is important to consider the relationship between the context of the hospital and the experiences of people living with dementia and their caregivers. The term context refers to the environment and conditions that shape experiences and includes elements such as policies, procedures, design and social norms. A greater understanding of the relationship between the hospital context and the experiences of people living with dementia will support the future development of interventions to modify contextual elements to improve the experiences of people living with dementia. Our aim was to explore the relationship between the experiences of people living with dementia and their caregivers in hospital, and the contextual elements of the hospital.

Methods

In this interpretive descriptive study, we conducted interviews with people living with dementia and caregivers of people living with dementia about their experiences in hospital. Interviews were conducted with people living with dementia (n = 3), caregivers of people living with dementia (n = 8) and one dyad of a person living with dementia and their caregiver (n = 1) about the hospitalisation of the person living with dementia. Using inductive and deductive methods of analysis, we describe contextual factors that shape their experiences.

Results

Our findings demonstrate how the hospital context shaped the experiences of people living with dementia and their caregivers while the person living with dementia was hospitalised. The themes reflect elements of the hospital context: communication systems, the value of caregivers, the focus on acute physical needs, staff capacity, the physical environment and normalised practices. The findings suggest that there are aspects of the hospital context that can be modified to influence the experiences of people living with dementia and their caregivers.

Conclusion

This study demonstrates how the context of hospital shapes the experiences of people living with dementia and their caregivers and points to aspects of the context that health system leaders could explore to begin to improve the capacity of hospitals to support people living with dementia.

Implications for Practice

The study provides evidence of the need for health system leaders and practitioner to explore how the hospital context shapes the experiences of people wtih dementia and their caregivers, and begins to explore ways that contextual changes can improve their experiences.