“If only they could understand me!” Acute hospital care experiences of patients with Alzheimer’s disease

Abstract

Patients with dementia as co-morbidity find hospital stays challenging, because the focus is primarily on the somatic cause for the admission, with less emphasis on the needs pertaining to dementia-related support and care. This results in poorer holistic outcomes, compared to patients without dementia, and an increased cost for the healthcare sector and, society as a whole. The quest is to make hospitals a dementia-friendly context, because this is likely to lead to better patient outcomes for people with dementia generally; however, further research is required to understand where gains may be made in this regard. This study conducted participant observation research strategies to follow patient journeys with Alzheimer’s disease admitted to orthopaedic wards, to learn about their experiences as patients. Longitudinal data were gathered by following patients on both day and evening shifts within a specialist orthopaedic hospital ward, commencing at patient admission and concluding at time of discharge. The data were interpreted from a phenomenological-hermeneutic perspective, inspired by Ricoeur’s interpretation theory. The study revealed a communication style among nurses who failed to take into account the comprehensive needs of patients with dementia, in terms of timely information exchange and clinical relevance. Patients expressed the desire to be more fully engaged in the care decision-making, together with indicating their appreciation of the work of the health professionals who cared for them. The data revealed that the process of getting to know the patient at the beginning of every shift left little room to alleviate patients’ experienced distress, caused by being in hospital. This resulted in patients who were less involved in the caring situation, or, if a patient took the initiative to act, intentions ended up being misinterpreted as disruptive behaviour. The findings have relevance for staff and ward management who are interested to strive to enhance the patient journey as a dementia-friendly hospital.