An Approach to Improve Dementia Health Literacy in Indigenous Communities

Abstract

This project aims to improve health literacy in Indigenous communities through the development of evidence-based culturally relevant health promotion materials on dementia that bridge the gap between Indigenous and Western perspectives of the illness. The research team worked in partnership with Health Canada's First Nations and Inuit Home and Community Care Program (FNIHCC) and consulted with Indigenous elders to utilize a two-eyed seeing framework that draws upon Indigenous knowledge and Western biomedicine. A consolidated review of materials and research involving Indigenous perspectives of Alzheimer's and age-related dementias led to the development of two culturally appropriate fact sheets. Two Indigenous-specific fact sheets were developed "What is Dementia? Indigenous Perspectives and Cultural Understandings" and "Signs and Symptoms of Dementia: An Indigenous Guide." The fact sheets prioritize Indigenous knowledge and pay particular attention to Indigenous languages, diverse Indigenous cultures, and literacy levels. The content uses phrasing and words from Indigenous people involved in the research to share information. Biomedical concepts and words were included when necessary but language or presentation of these aspects were often modified to reflect Indigenous conceptualizations. This project provides a foundation for evidence-based knowledge translation in relation to cultural safety in dementia care. Specifically, the researchers outline how health care providers can develop culturally appropriate health promotion material, thus increasing Indigenous cultural understandings of dementia and health literacy.

An integrative review of empirical literature on indigenous cognitive impairment and dementia

“…The most recently published study included in our review, Webkamigad et al. (2020), demonstrates the importance of supporting Indigenous and Western understandings of disease diagnoses and the benefits of engaging in the ‘two‐eyed seeing approach to decolonizing health information’ (p. 77). In demonstrating the importance of culturally appropriate assessment techniques, researchers propose the implementation and creation of culturally relevant tools for use in clinical settings – another prominent theme in our review.…”

“…Ultimately, the studies which speak to this theme indicate that there is a need for an increased awareness of Indigenous perspectives of cognitive impairment and, more generally, the effects of settler colonialism on healthcare systems. Education campaigns, often premised on the concepts of knowledge sharing and Indigenous ways of knowing, are suggested as one way to incorporate and value such, in policymaking and practice (Finkelstein et al., 2012; Garvey et al, 2010; Lindeman et al., 2012; Luo et al., 2018; Taylor et al., 2012; Webkamigad et al., 2020). Visual tools used to promote awareness of dementia, such as Looking out for dementia (Lindeman et al., 2012; Taylor et al., 2012), a 16‐min video produced in English and three Aboriginal languages found in the Northern Territory of Australia, are a promising educational method.…”

“…Visual tools used to promote awareness of dementia, such as Looking out for dementia (Lindeman et al., 2012; Taylor et al., 2012), a 16‐min video produced in English and three Aboriginal languages found in the Northern Territory of Australia, are a promising educational method. Fact sheets that prioritize Indigenous ways of knowing and language (respective of various literacy levels) are another method used by researchers in Canada (Webkamigad et al., 2020).…”

“…Furthermore, they speak to the need for assessment tools and techniques to be ‘culturally appropriate’ (Hulko et al., 2010, p. 334). This typically means engaging in interviews, sharing circles, and other local Indigenous methods of knowledge sharing, to establish culturally respective assessment tools that lead to improved rates of diagnosis (Bell et al, 2015; Forbes et al., 2013; Goldberg et al., 2018; Hulko et al., 2010; Killcullen et al, 2016; Lanting et al., 2011; Smith et al, 2011; Webkamigad et al., 2020).…”

Race- and Sex-Based Disparities in Alzheimer’s Disease Clinical Trial Enrollment in the United States and Canada: An Indigenous Perspective

“…Lack of culturally specific information. Brochures, pamphlets, or newsletters that explain the symptoms, diagnosis, and treatment options for AD are required to communicate with Indigenous populations and should be available in a language that is culturally sensitive and not insulting [31,65,[91][92][93]145].…”