PIECES of my RELATIONSHIPS: The Cultural Adaptation of a Biographical Assessment Tool for Indigenous Older Adults in Canada.

BACKGROUND AND OBJECTIVES: Healthcare services are rarely designed to meet the needs of Indigenous people, resulting in culturally unsafe care and assessment tools. This paper describes a collaboration between North East Behavioural Supports Ontario (NEBSO), university researchers, and Indigenous communities to adapt a biographical assessment tool used by NEBSO to be culturally appropriate and safe for Indigenous older adults (55+) in long-term care facilities in Ontario, Canada. RESEARCH DESIGN AND METHODS: Over 36 months, this project applied an Indigenized, community-based participatory research (CBPR) and cultural safety framework to the adaptation process. Qualitative data sources include the guidance of an Indigenous Elder, an Anishinaabe Language Expert Group, and focus groups conducted along the North Shore of Lake Huron, Sudbury, and Cochrane, Ontario. RESULTS: The adapted tool shifts the focus from personhood to relationships, includes culturally relevant domains, and supports trauma-informed approaches. Five themes were identified during the adaptation process: (1) practicing a relational approach to care, (2) valuing Indigenous language, (3) understanding Indigenous trauma, (4) respecting cultural values and understandings, and (5) addressing systemic barriers to culturally safe care. DISCUSSION AND IMPLICATIONS: Themes elucidated from this research process can inform future studies adapting mainstream practice tools and developing new tools for Indigenous populations. The collaboration and approach to this adaptation process demonstrated how cultural safety at systemic and practice levels can be addressed through CPBR partnerships between universities, organizations, and Indigenous communities. Findings support the need to evaluate the cultural safety of other assessments for older Indigenous adults in healthcare settings.

Training Indigenous Community Researchers for Community-Based Participatory Ethnographic Dementia Research: A Second-Generation Model.

Conducting community-based participatory research (CBPR) is a complex endeavor, particularly when training non-academic community members. Though examples of CBPR training programs and protocols have been published, they often address a limited set of concepts and are tailored for university or medical school students. Here, we describe the process of developing an online CBPR training program for American Indian (United States) and Indigenous (Canada) community members to conduct multi-sited ethnographic dementia research. This program is unique in its breadth and depth, as our program covers CBPR theory, methods, practical research, and administrative skills. Significantly, this program centers Indigenous methodology, pedagogy, and processes such as two-eyed seeing, storywork, and decolonization approaches. Key to this training program is a "second-generation" approach which incorporates experiential knowledge from prior community-based researchers and academic partners and is designed to develop CBPR capacity among community-based researchers and partnering communities. In this paper, we detail the experience of the first cohort of learners and subsequent improvement of the training materials. Unique challenges related to the specific research focus (dementia care pathway), population/setting (American Indian and Indigenous communities), and technology (rural digital infrastructure) are also discussed.

Canadian Indigenous Cognitive Assessment (CICA): Inter-rater reliability and criterion validity in Anishinaabe communities on Manitoulin Island, Canada.

INTRODUCTION: Despite increasing dementia rates, few culturally informed cognitive assessment tools exist for Indigenous populations. The Canadian Indigenous Cognitive Assessment (CICA) was adapted with First Nations on Manitoulin Island, Canada, and provides a brief, multi-domain cognitive assessment in English and Anishinaabemowin. METHODS: Using community-based participatory research (CBPR) methods, we assessed the CICA for inter-rater and test-retest reliability in 15 individuals. We subsequently evaluated validity and established meaningful CICA cut-off scores in 55 individuals assessed by a geriatrician. RESULTS: The CICA demonstrated strong reliability (intra-class coefficient = 0.95 [0.85,0.98]). The area under the curve (AUC) was 0.98 (0.94, 1.00), and the ideal cut-point to identify likely cases of dementia was a score of less than or equal to 34 with sensitivity of 100% and specificity of 85%. DISCUSSION: When used with older First Nations men and women living in First Nations communities, the CICA offers a culturally safe, reliable, and valid assessment to support dementia case-finding.

Understanding Aging, Frailty, and Resilience in Ontario First Nations.

Following Canadian estimates of frailty, academic researchers and the Chiefs of Ontario came together to create the first Ontario-wide profile of aging in First Nations people in Ontario. Using self-reported data from First Nations adults who participated in the Ontario First Nations Regional Health Survey Phase 2, we found that First Nations people in Ontario experience higher rates of frailty than the general Canadian population and early onset frailty appears to affect First Nations communities. This is important to consider as communities plan for health care needs of an aging population and is particularly relevant in the face of Covid-19, as we know severity is exacerbated by underlying health conditions.

Developing the Canadian Indigenous Cognitive Assessment for Use With Indigenous Older Anishinaabe Adults in Ontario, Canada.

BACKGROUND AND OBJECTIVES: Dementia is a growing public health issue for aging Indigenous populations. Current cognitive assessments present varying degrees of cultural, educational, and language bias, impairing their application in Indigenous communities. Our goal is to provide Anishinaabe communities in Canada with a brief cognitive test that can be administered within the community setting by community health workers or professionals. The purpose of this study was to adapt the Kimberly Indigenous Cognitive Assessment (KICA) for use as a brief cognitive test with Anishinaabe populations in Canada. RESEARCH DESIGN AND METHODS: We used a community-based participatory research approach coupled with two-eyed seeing to provide an equitable space for Indigenous knowledge. Adaptation of the KICA was accomplished over 22 months using an iterative cycle of monthly consultations between an 11-member expert Anishinaabe language group (EALG) and the investigators, with ad hoc consultations with an Indigenous Elder, a community advisory council, and the KICA authors. Face validity was established with two pilot studies using cognitive interviewing with Indigenous older adults (n = 15) and a focus group consultation with local health professionals (n = 7). RESULTS: Each question of the KICA was scrutinized by the EALG for cultural appropriateness, language and translation, and cultural safety. Every domain required adaptation to reflect cultural values, specificity of language, tone, and a culturally safe approach. Orientation, verbal comprehension and fluency, praxis, and naming domains required the most adaptations. The first pilot for face validity resulted in additional changes; the second confirmed satisfactory adaptation of all changes. DISCUSSION AND IMPLICATIONS: The research resulted in the new Canadian Indigenous Cognitive Assessment. The findings reveal important cultural and linguistic considerations for cross-cultural cognitive assessment in Indigenous contexts. This new culturally appropriate and safe brief cognitive test may improve case finding accuracy and lead to earlier diagnosis and improved dementia care for Indigenous peoples.

Peace of mind: A community-industry-academic partnership to adapt dementia technology for Anishinaabe communities on Manitoulin Island.

INTRODUCTION: Aging Technologies for Indigenous Communities in Ontario (ATICON) explores the technology needs of Anishinaabe older adults in the Manitoulin region of Northern Ontario. Our program of research addresses inequitable access to supportive technologies that may allow Indigenous older adults to successfully age in place. METHODS: Using Indigenous research methodologies (IRM) and community-based participatory research (CBPR) we explored the acceptability of CareBand - a wearable location and activity monitoring device for people living with dementia using a LoRaWAN, a low-power wide-area network technology. We conducted key informant consultations and focus groups with Anishinaabe Elders, formal and informal caregivers, and health care providers (n = 29) in four geographically distinct regions. RESULTS: Overall, participants agreed that CareBand would improve caregivers' peace of mind. Our results suggest refinement of the technology is necessary to address the challenges of the rural geography and winter weather; to reconsider aesthetics; address privacy and access; and to consider the unique characteristics of Anishinaabe culture and reserve life. CONCLUSION: All three partners in this research, including the Indigenous communities, industry partner, and academic researchers, benefited from the use of CBPR and IRM. As CareBand is further developed, community input will be crucial for shaping a useful and valued device.

An Approach to Improve Dementia Health Literacy in Indigenous Communities.

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.