An integrative review of Indigenous informal caregiving in the context of dementia care.

Abstract

To appraise the empirical literature on the needs of Indigenous informal caregivers caring for people living with dementia in Indigenous communities. Whittemore and Knafl's updated approach to integrative reviews, PRISMA guidelines, and CASP checklists for narrative analysis were followed. A systematic search of published empirical literature from January 2010 to August 2020 was undertaken in six databases. Fifty-one studies met the research question and the inclusion criteria. Five themes describe the findings: Decolonizing Western perspectives on dementia, the centrality of cultural safety, caregivers' experiences, pre-dementia community education and family and community-centred care emerged from the thematic analysis. Most of the studies used quantitative methodologies, and few studies were conducted using community-based approaches. This review shows that Indigenous caregiving represents an emerging field in nursing and health sciences in a context of a global crisis. Researchers need to focus on Indigenous values and voices to adapt care and support informal caregivers. Our review emphasizes that working with Indigenous communities will likely translate into new care delivery models, policies and practices to support Indigenous informal caregivers and address the specific social determinants impacting caregivers' roles and tasks. This review highlights the necessity of having community and family-based discussions on enhancing the delivery of dementia care for Indigenous peoples in Canada and worldwide. Decolonizing Western perspectives of dementia translate into culturally safe approaches that aim to integrate Indigenous cultural perspectives of holism, reciprocity, wisdom, respect of older people and relationality into nursing practice. The support of Indigenous informal caregivers requires future studies to address the stigmatizing Western views of dementia.