Nursing staff needs in providing palliative care for people with dementia at home or in long-term care facilities: A scoping review

Background: Nursing staff caring for people with dementia have a crucial role in addressing palliative care needs and identifying changes in health status. Palliative care for people with dementia is complex and requires specific competences. A lack thereof may lead to unnecessary hospitalizations, poor symptom control and undesirable burdensome treatments. Understanding what nursing staff need to provide palliative care specifically for people with dementia facilitates the development of tailored and feasible interventions.

Objective: To investigate what is known from the literature regarding the needs in providing palliative dementia care as perceived by nursing staff working in home care or in long-term care facilities and to establish an integrated conceptualization of these needs.

Design: A scoping review method combined with thematic analysis methods.

Data sources: Bibliographic databases of PubMed, CINAHL and PsycINFO were searched for primary research studies.

Review methods: Guidelines from the Joanna Briggs Institute were utilized as a framework for setting up and conducting the scoping review. Eligible articles considered nursing staffs perceived needs in providing palliative dementia care at home or in long-term care facilities. Two authors assessed eligibility based on title and abstract, assessed full texts for selected records and assessed the quality of included articles. Thematic analysis methods were used to identify themes from relevant study findings, which were integrated to form a conceptualization.

Results: Of the 15 articles that were included, most used qualitative methods (N = 13) and were conducted in long-term care facilities (N =14). Themes reflecting nursing staff needs on a direct care-level concern recognizing and addressing palliative care needs (such as comfort), verbal and non-verbal communication, challenging behaviour and familiarity: knowing and understanding the person with dementia. On more distant levels, themes involve a need for interdisciplinary collaboration, training and education and organizational support.

Conclusion: A comprehensive overview of nursing staff perspectives on providing palliative care for people with dementia demonstrates interdependent needs related to recognizing and addressing palliative care needs, communicating, handling challenging behaviour and building close care relationships. These care-related needs occur within workplace and organizational contexts. Organizational support is considered insufficient. Yet, healthcare organizations have the authority to fulfil a facilitating role in implementing nursing interventions tailored to nursing staff needs. Areas for further research include home care settings, the psychosocial and spiritual domains of palliative dementia care, advance care planning and family involvement. (C) 2019 Elsevier Ltd. All rights reserved.