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Waiting for home : dementia and the alternate level of care experience Sakamoto, Mariko Liette

Abstract

Patients who remain in hospital once their health has stabilized are designated Alternate Level of Care (ALC). This often occurs for patients living with dementia when care needs exceed what can be managed at home. Overall, ALC patients living with dementia experience lengthy hospitalizations. Unfortunately, there is little research that takes into account the experiences and needs of these patients. This Interpretive Description study, theoretically grounded in personhood and social citizenship perspectives, focused on the patients’ experiences to address this gap in research and to better understand how care for ALC patients living with dementia can be improved. Twenty-one individuals participated in this study: eight patient participants designated ALC living with dementia, six family members, and seven nurses. Data collection methods comprised of participant observations and general observations of the study setting, including patient rounds and meetings, totaling 106 hours of observations. Fourteen semi-structured interviews were conducted with family member and nurse participants, and with one patient participant. Informal conversations were undertaken with patient participants who did take part in interviews. Findings from this study are presented in three parts, and include a selection of found poems. Firstly, the daily life of ALC patients living with dementia is explored, revealing the challenges the patients regularly encountered over long hospitalizations. Secondly, the distress that the patients experienced on a recurring basis is brought into sharp relief. Thirdly, the agency and resiliency of the patients is brought to the fore, widening the lens from which patients living with dementia can be considered. Findings are discussed in the context of the ambiguity of ALC care, the pervasive liminality the patients experienced, and prevailing discourses around the behavioural and psychological symptoms of dementia. Implications for nursing practice include the need to acknowledge and foster the abilities of patients living with dementia. The behaviour narrative and labeling prevalent in hospitals must also be challenged. Lastly, nurses need to recognize the significant transition that is the ALC experience. This study advocates for person-centered and inclusive nursing care, where ongoing needs are recognized and addressed, particularly for ALC patients living with dementia who are waiting for home.

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Attribution-NonCommercial-NoDerivatives 4.0 International

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