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

Abstract

Aims To appraise the empirical literature on the needs of Indigenous informal caregivers caring for people living with dementia in Indigenous communities. Design Whittemore and Knafl's updated approach to integrative reviews, PRISMA guidelines, and CASP checklists for narrative analysis were followed. Data sources A systematic search of published empirical literature from January 2010 to August 2020 was undertaken in six databases. Review methods Fifty‐one studies met the research question and the inclusion criteria. Results 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. Conclusion 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. Impact 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.

2023 Alzheimer's disease facts and figures

“…Furthermore, if individuals continue to lack representation in Alzheimer's research, they will not receive the benefits of racially and ethnically sensitive prevention, treatment or care innovations 425,427 . Establishing stronger relationships with existing organizations and resources in Black communities, indigenous communities and other communities of color offers the potential for research‐based partnerships to enhance representation in Alzheimer's disease research and result in more culturally appropriate and effective services 432,434,438–449 …”

Three Perspectives on the Experience of Support for Family Caregivers in First Nations Communities

“…Canadian FCGs provide 90% of the care to people living in private community homes [ 31 ] and assist with 15 to 30% of the care in supportive living and long-term care [ 32 , 33 ]. Many of the participants in this study suggested that First Nations FCGs are likely providing more care, as they expected to provide care without the support available to nonindigenous Canadian caregivers [ 16 ]. Indigenous FCGs urgently need integrated policy, health, and social care systems to support them to care for and maintain their health.…”

“…They too were stymied by the complicated records systems and policies between different government levels. Racine and colleagues’ [ 16 ] review of the experience of indigenous caregiving for dementia related to the burden of geographic isolation, lack of funding for healthcare facilities, and legacies of colonial policies and trauma. We agree that these factors also increase the indigenous structural burden of care.…”

“…They tied unaddressed social determinants of health like poverty, inadequate housing, unsafe water, and health issues to colonial policies and systemic racism. Systemic racism is associated with inconsistent and low-quality care for indigenous people [ 16 ]. Racism is a potent psychosocial stressor that combines with other factors to increase poverty, reduce access to employment, reduce mental and physical health, and increase premature mortality.…”

“…Indigenous Services Canada also identified increased demands from greater numbers of people with complex care needs, multiple chronic conditions, mental health, and addictions [ 15 ]. Although not voluminous, there is some literature on the experiences of Canadian indigenous caregivers [ 8 , 16 ], however there is a dearth of literature from FCGs’ and providers’ perspectives.…”