Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021

Abstract

Introduction High quality research involving Indigenous people with cognitive impairment and dementia is critical for informing evidence-based policy and practice. We examined the volume, scope and ethical considerations of research related to dementia with Indigenous populations globally from January 2000–December 2021. Methods Studies were included if they were published in English from 2000 to 2021 and provided original data that focused on cognitive impairment or dementia in any Indigenous population. Results The search yielded 13,009 papers of which, 76 met inclusion criteria. The overall number of papers increased over time. Studies were mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 30; 39%). Twenty-six papers directly involved Indigenous participants with cognitive impairment or dementia. Of these studies, ethics approval was commonly required from two or more committees (n = 23, 88.5%). Ethical and legal governance frameworks were rarely discussed. Discussion There is a clear need for further robust studies examining cognitive impairment and dementia with Indigenous populations. Future research should consider the ethical aspects of involving Indigenous participants with cognitive impairment in research.