Waiting for home: The experience of delayed discharge for people with dementia.

Abstract

Individuals who remain in hospital once their health has stabilised experience delayed discharge. This often occurs for people with dementia when care needs exceed what can be managed at home. There is little research that takes into account the experience and needs of these patients. This Interpretive Description (ID) study, theoretically grounded in personhood and social citizenship perspectives, focused on the perspectives of people with dementia experiencing delayed discharge to address this gap in research and to better understand how nursing care can be improved for them. Twenty-one individuals participated in this study: eight patient participants experiencing delayed discharge and living with dementia, six family members, and seven nurses. Data collection methods primarily included participant observations, totalling 100h of observations. Fourteen semi-structured interviews were also conducted with family members and nurses and with one patient participant. Informal conversations were undertaken with patient participants who did not take part in interviews. Thematic analysis resulted in three main themes, encapsulating the patients' experiences: (1) Living and Waiting; (2) Distress and Behaviours; and (3) Looking Beyond the Designation. Findings are discussed in the context of the passive nature of delayed discharge care, the need for person-centred care, and prevailing discourses around the behavioural symptoms of dementia. Implications for nursing practice include the need to acknowledge and foster the abilities of people with dementia. The behaviour narrative and labelling prevalent in hospitals must also be challenged. Lastly, nurses need to recognise the significant transition that is the delayed discharge experience, especially for people with dementia. This study advocates for person-centred and inclusive nursing care, where ongoing needs are recognised and addressed, particularly for people with dementia experiencing delayed discharge, who are waiting for home.