The MN RIDE pilot: feasibility of a synchronous, remotely delivered, aerobic exercise training program for rural-dwelling adults with subjective cognitive decline.

INTRODUCTION: Out of all the modifiable risk factors for Alzheimer's disease and related dementias (ADRD), physical inactivity is the strongest. Rural residents have an increased risk for dementia and face significant barriers to accessing ADRD information, caregiving support, and memory-related services, which contributes to substandard care. Rural communities have greater barriers to participating in physical activity, and in particular exercise, due to lack of social support, travel/weather problems, and lack of facilities/equipment. The purpose of this pilot study was to implement and evaluate the feasibility and safety of a synchronous, remotely delivered, aerobic exercise (AEx) telerehabilitation program in persons with subjective cognitive decline (SCD) living in rural areas. METHODS: The Minnesota Rehabilitation Intervention for Dementia Evasion for rural residents (MN RIDE) pilot study was one of five pilot studies conducted through the Center for Community Engaged Rural Dementia and Alzheimer's Research, conducted in collaboration with the Memory Keepers Medical Discovery Team. The Memory Keepers Medical Discovery Team employs a community-based participatory research model and uses a community advisory group, community-based researchers and a rural community engagement specialist to ensure research studies are aligned with rural community needs and to facilitate the recruitment of participants living in rural northern Minnesota. The MN RIDE study employed a single group, pretest-post-test design to test the feasibility and safety of an AEx-focused synchronous telerehabilitation program in rural-living middle-aged or older adults (>45 years) with SCD (indicated by answering yes to both, 'Do you perceive memory or cognitive difficulties?' and 'In the last two years, has your cognition or memory declined?'). All 36 AEx sessions (conducted over 12 weeks) were supervised remotely via smart devices and Zoom. The AEx program was classified as moderate intensity stationary cycling starting at a rating of perceived exertion (RPE) 11-12 or for 30-35 minutes in session 1, and was alternatively increased by 1-point RPE or 5-minute increments as tolerated up to RPE 12-14 for 50 minutes a session over time (by session 18). Secondarily, moderate intensity was defined as achieving an exercise heart rate of 64-76% of age-predicted maximum heart rate (HRmax). Feasibility and safety outcomes were assessed by session attendance, intensity adherence, presence of adverse events, and participant satisfaction. RESULTS: The average age of the study sample (n=9) was 57.44±7.16 years (average age of SCD onset 53.44±7.47 years) with 14.00±5.57 years of education and 88.9% female. All patients completed the study, resulting in a dropout rate of 0%. Out of the possible 324 sessions scheduled, 276 were attended (85% session adherence). Average intensity metrics achieved over the AEx sessions were RPE 13.2±0.5 and HRmax 72.0±7.9%, which both represent of moderate intensity AEx metrics. No adverse events were reported. CONCLUSION: This pilot study further provides the first evidence of preliminary feasibility of synchronous audiovisual, telerehabilitation programs delivered to rural residents at risk for ADRD. Thus, exercise telerehabilitation programs that focus on AEx could be viable and useful tools to overcome situations with limited access to healthcare services such as in rural communities. Further controlled studies with greater sample size could help further expand our results.

Diabetes prevalence, incidence and mortality in First Nations and other people in Ontario, 1995-2014: a population-based study using linked administrative data.

BACKGROUND: Diabetes mellitus is an established health concern in First Nations communities and is associated with complex influences of colonization. This study, a partnership between First Nations and academic researchers, was undertaken to determine patterns of diabetes prevalence, incidence and mortality in Ontario. METHODS: Using health services and population data from Ontario for 1995 to 2014, linked with the federal Indian Register, we calculated age- and sex-adjusted annual estimates of diabetes prevalence, incidence and mortality for First Nations people (living within and outside First Nations communities) and other people in Ontario. We also examined age- and sex-specific crude diabetes prevalence. RESULTS: Between 1995 and 2014, the prevalence of diabetes increased and the incidence decreased somewhat in all populations. Both prevalence and incidence were substantially higher among First Nations people than among other people in Ontario. In particular, First Nations women had higher prevalence than other women (4.2% v. 1.6% for ages 20-34 yr and 17.6% v. 6.0% for ages 35-49 yr). The lifetime risk of diabetes was higher among First Nations people than among other people in Ontario (57.0%, 95% confidence interval [CI] 56.3%-57.6% v. 44.5%, 95% CI 44.4%-44.6%). Over time, all-cause mortality for those with diabetes declined but remained consistently higher for First Nations people than for other people in Ontario. INTERPRETATION: Diabetes is more common among First Nations people than among other people in Ontario, particularly at younger ages and in women. First Nations-led approaches to address the high prevalence of diabetes in younger First Nations women have the potential to improve metabolic health across generations.

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.

Trends in cardiovascular care and event rates among First Nations and other people with diabetes in Ontario, Canada, 1996-2015.

BACKGROUND: Rates of cardiovascular disease among people with diabetes have declined over the last 20-30 years. To determine whether First Nations people have experienced similar declines, we compared time trends in rates of cardiac event and disease management among First Nations people with diabetes and other people with diabetes in Ontario, Canada. METHODS: We conducted a retrospective cohort study of patients aged 20 to 105 years with diabetes between 1996 and 2015, using linked health administrative databases. Outcomes compared were the annual incidence of each admission to hospital for myocardial infarction and heart failure, and death owing to ischemic heart disease. Management indicators were coronary revascularization and prescription rates for cardioprotective medications. Overall rates and annual percent changes were compared using Poisson regression. RESULTS: Incidence rates for all cardiac outcomes decreased over the study period. The greatest relative annual decline among First Nations men and women were observed in ischemic heart disease death (4.4%, 95% confidence interval [CI] 3.0 to 5.9) and heart failure (5.4%, 95% CI 4.5 to 6.4), respectively. Among other men and women, the greatest annual declines were seen in ischemic heart disease death (6.3%, 95% CI 6.1 to 6.5 and 7.3%, 95% CI 7.1 to 7.6, respectively). However, all absolute cardiac event rates were higher among First Nations people (p < 0.001). Coronary artery revascularization procedures and prescriptions for cardioprotective medications increased among First Nations people, while only prescriptions increased among other people. INTERPRETATION: Over the last 20 years, the incidence of cardiac events has declined among First Nations people with diabetes, but remains higher than other people with diabetes in Ontario. For continued reductions in incidence, future efforts need to recognize First Nations people's unique social and cultural determinants of health.

Educating for Equity Care Framework: Addressing social barriers of Indigenous patients with type 2 diabetes.

OBJECTIVE: To present a clinical framework for addressing critical social elements for Indigenous patients with type 2 diabetes. SOURCES OF INFORMATION: The Educating for Equity (E4E) Care Framework was developed through a rigorous analysis of qualitative research that included the perspectives of Indigenous patients (n = 32), physicians (n = 28), and Indigenous health curriculum developers (n = 5) across Canada. A national advisory group of Indigenous health experts, educators, leaders, physicians, and community members provided feedback on integrating analysis from primary research into recommendations for physicians. Systematic literature reviews were conducted and a nominal group technique process helped forge research team consensus around the framework's themes and recommendations. MAIN MESSAGE: For Indigenous patients with type 2 diabetes, social factors arising from the legacy of colonization are often barriers to improved diabetes outcomes, while culture is often not recognized as a facilitator in diabetes management. Structural competency in balance with cultural safety should be central to the clinical process when negotiating diabetes management with Indigenous patients. The E4E Care Framework presented in this article provides recommendations to navigate this terrain. CONCLUSION: A focus on social and cultural elements is fundamental to effective diabetes care among Indigenous patients. The E4E Care Framework is a resource that can help clinicians improve Indigenous patients' capacity for change in a way that acknowledges the social factors that affect the increasing diabetes rates, while using a cultural lens to facilitate improved outcomes.

Mistreated older adults with dementia in the home: practitioner experience and unattainable professional agency.

The experience of practitioners who encounter mistreatment of an older adult with dementia by a caregiver in the home has received little attention in the literature. A critical research methodology aimed to understand the experience of professional agency, the ability to control outcomes and act in a meaningful way, of health and social service practitioners when encountering these cases in the home. Fifty-one practitioners from urban, rural and Northeastern communities in Ontario participated in semi-structured interviews, reflective journals, as well as focus group discussions. Theoretical thematic analysis of data led to the discovery of five themes: weathering the storm to realization; cognitive uncertainty; emotional upheaval; one's inability to resolve the mistreatment; and the double-edge sword of self-reflection. Understanding this experience is an essential step toward improving practice and policy, and achieving positive outcomes for the mistreated older adult with dementia and their caregiver within the home.

Health care experiences of Indigenous people living with type 2 diabetes in Canada.

BACKGROUND: Indigenous social determinants of health, including the ongoing impacts of colonization, contribute to increased rates of chronic disease and a health equity gap for Indigenous people. We sought to examine the health care experiences of Indigenous people with type 2 diabetes to understand how such determinants are embodied and enacted during clinical encounters. METHODS: Sequential focus groups and interviews were conducted in 5 Indigenous communities. Focus groups occurred over 5 sessions at 4 sites; 3 participants were interviewed at a 5th site. Participants self-identified as Indigenous, were more than 18 years of age, lived with type 2 diabetes, had received care from the same physician for the previous 12 months and spoke English. We used a phenomenological thematic analysis framework to categorize diabetes experiences. RESULTS: Patient experiences clustered into 4 themes: the colonial legacy of health care; the perpetuation of inequalities; structural barriers to care; and the role of the health care relationship in mitigating harm. There was consistency across the diverse sites concerning the root causes of mistrust of health care systems. INTERPRETATION: Patients' interactions and engagement with diabetes care were influenced by personal and collective historical experiences with health care providers and contemporary exposures to culturally unsafe health care. These experiences led to nondisclosure during health care interactions. Our findings show that health care relationships are central to addressing the ongoing colonial dynamics in Indigenous health care and have a role in mitigating past harms.

Development and Use of Health-Related Technologies in Indigenous Communities: Critical Review.

BACKGROUND: Older Indigenous adults encounter multiple challenges as their age intersects with health inequities. Research suggests that a majority of older Indigenous adults prefer to age in place, and they will need culturally safe assistive technologies to do so. OBJECTIVE: The aim of this critical review was to examine literature concerning use, adaptation, and development of assistive technologies for health purposes by Indigenous peoples. METHODS: Working within Indigenous research methodologies and from a decolonizing approach, searches of peer-reviewed academic and gray literature dated to February 2016 were conducted using keywords related to assistive technology and Indigenous peoples. Sources were reviewed and coded thematically. RESULTS: Of the 34 sources captured, only 2 concerned technology specifically for older Indigenous adults. Studies detailing technology with Indigenous populations of all ages originated primarily from Canada (n=12), Australia (n=10), and the United States (n=9) and were coded to four themes: meaningful user involvement and community-based processes in development, the digital divide, Indigenous innovation in technology, and health technology needs as holistic and interdependent. CONCLUSIONS: A key finding is the necessity of meaningful user involvement in technology development, especially in communities struggling with the digital divide. In spite of, or perhaps because of this divide, Indigenous communities are enthusiastically adapting mobile technologies to suit their needs in creative, culturally specific ways. This enthusiasm and creativity, coupled with the extensive experience many Indigenous communities have with telehealth technologies, presents opportunity for meaningful, culturally safe development processes.

Informal Dementia Caregiving Among Indigenous Communities in Ontario, Canada.

Recent studies suggest dementia is an emerging health issue for Indigenous peoples in Canada. In this article, we explore findings concerning informal dementia caregiving in Indigenous communities. Our research has been carried out in partnership with Indigenous communities in Ontario, Canada, over the past 4 years. Semistructured in-depth interviews were carried out with informal Indigenous caregivers (primarily family) to Indigenous people with dementia at 7 geographically and culturally diverse research sites (n = 34). We use a critical interpretive and postcolonial lens to explore common caregiving experiences and patterns to gain insight into Indigenous models of care and better understand how to appropriately support Indigenous families dealing with a dementia diagnosis. Themes from the interview data are explored through a storyline beginning with why and how participants came to the caregiving role; the challenges, struggles, and decisions along the way; and reflections on the rewards and benefits of caring for a loved one with dementia. The findings suggest that underlying Indigenous values created a consistent family caregiving model across the Indigenous cultures and geographic contexts included in the study. Family caregiving was found to facilitate cultural continuity through intergenerational contact and the transmission of cultural knowledge. Diverse community contexts presented significant challenges most immediately attributable to the nature of relations between Indigenous and non-Indigenous Canadians and the continued colonial policies governing access to services.

Cadre de soins fondé sur l'éducation pour l'équité: Éliminer les obstacles sociaux des patients autochtones vivant avec le diabète de type 2.

OBJECTIF: Présenter un cadre clinique afin de prendre en considération les éléments sociaux critiques pour les patients autochtones atteints de diabète de type 2. SOURCES DE L'INFORMATION: Le Cadre de soins fondé sur l'éducation pour l'équité (Educating for Equity [E4E] Care Framework) a été produit à la suite de l'analyse rigoureuse d'une recherche qualitative portant sur les points de vue de patients autochtones (n = 32), de médecins (n = 28) et d'élaborateurs de cursus en santé autochtone (n = 5) dans toutes les régions du Canada. Un groupe consultatif national formé d'experts en santé autochtone, d'enseignants, de dirigeants, de médecins et de membres de la collectivité a exprimé des commentaires sur une analyse intégrant la recherche primaire dans les recommandations à l'intention des médecins. Des revues systématiques de la documentation ont été effectuées, et la technique du groupe nominal a servi à en arriver à un consensus de l'équipe de recherche sur les thèmes et les recommandations du cadre. MESSAGE PRINCIPAL: Pour les patients autochtones atteints du diabète de type 2, les facteurs sociaux découlant des séquelles de la colonisation sont souvent des obstacles à l'amélioration des issues du diabète, et la culture n'est souvent pas reconnue comme une facilitatrice dans la gestion du diabète. Il est essentiel que le processus clinique unisse la compétence structurelle en juste équilibre avec la sécurité culturelle dans la négociation de la gestion du diabète avec des patients autochtones. Le Cadre de soins fondé sur l'éducation pour l'équité présenté dans cet article propose des recommandations pour naviguer dans ces eaux. CONCLUSION: Il est fondamental de mettre l'accent sur les éléments sociaux et culturels pour offrir des soins du diabète efficaces aux patients autochtones. Le Cadre de soins fondé sur l'éducation pour l'équité est une ressource qui peut aider les cliniciens à améliorer la capacité des patients autochtones à apporter des changements d'une façon qui reconnaît les facteurs sociaux qui influencent les taux croissants de diabète, tout en ayant une perspective culturelle pour favoriser de meilleurs résultats.

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 health care 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.

Rural health disparities in health care utilization for dementia in Minnesota.

PURPOSE: We visualized rural-urban differences in inpatient hospitalization and emergency department (ED) health care utilization (HCU) for older adults with dementia to understand the HCU of rural versus urban older adults in Minnesota and to examine in greater detail the variability of HCU in rural areas. METHODS: For 3 older adult age groups, we utilized Healthcare Cost and Utilization Project (H-CUP) datasets from 2016 to 2018 to profile hospital admission rates, and ED visit rates related to dementia stratified by rurality and regions. Rates were visualized by spatial interpolation method. We then used logistic regression analysis adjusted by multiple covariates to evaluate rural-urban differences of the chance of having a dementia diagnosis in HCU. FINDINGS: Minnesota rural areas showed 17.6% lower age-adjusted rate (AAR) of dementia mortality than urban areas. AARs of ED visits for dementia were 12.4% higher in rural ZIP codes, whereas AARs of hospitalization were 24.7% lower. After controlling for neighborhood-level risk factors, such as income, education, health behaviors, and provider access, the odds ratios of having dementia diagnosis are 12% lower if an ED visit patient lives in rural as opposed to an urban area (OR = 0.88, P<.0001). CONCLUSIONS: In comparison to AAR, the fully adjusted data showed larger rural-urban predictors of having dementia diagnoses in hospitalizations and ED utilizations and demonstrated differences between AAR of ED visit and odds ratios of having dementia diagnosis. A regional comparison revealed that dementia ED visits were higher for Northeast MN compared to Minnesota's largest metropolitan region.

Practitioner Experience With Mistreated Older Adults Who Have Dementia: Understanding Contextual Influences and Consequences.

Studies of mistreatment of older adults have revealed alarmingly higher prevalence rates of mistreatment of those who have dementia. When the mistreatment occurs within the context of the home and is perpetrated by a family caregiver, it may remain hidden and only be discovered by the health and social service practitioners who have access to the home. Understanding the contexts within which this mistreatment occurs, and the influence of these contexts on the experience of these practitioners as well as on the resulting outcomes for mistreated older adults, has received little attention in the literature. This qualitative study, framed by critical social theory, aimed to answer the following research question: What are the contextual influences on practitioner experience with mistreatment of older adults with dementia by a caregiver within the home? Specifically, this study explored contextual influences within a Canadian province, where there is neither specific adult protective legislation nor infrastructure when mistreatment occurs within the home. Data were collected via semi-structured interviews, journals, and focus groups with 51 practitioners from various disciplines providing services to mistreated older adults with dementia in their homes. Theoretical thematic analysis led to the discovery of five contextual themes influencing the experience: the privileged burden of seeing behind closed doors; a domestic problem within a societal context; interprofessional challenges; a history of stagnation, losses, and systems failure; and a legislative complexity and oppression. Understanding these contextual influences is crucial to supporting practitioners, who, although entrusted to protect mistreated older adults, describe powerlessness within current contexts. This understanding is needed to improve outcomes for mistreated older adults with dementia.

Wellness in the Face of Frailty Among Older Adults in First Nations Communities.

OBJECTIVES: First Nations people report high levels of wellness despite high rates of chronic illness. Our goal was to understand the factors associated with wellness among First Nations adults in Ontario who were considered frail. METHODS: Using the First Nations Regional Health Survey, we created a profile of First Nations adults (aged 45+) who were categorized as "frail" (weighted sample size = 8121). We used multivariate logistic regression to determine associations between wellness (as measured by self-reported physical, emotional, mental, and spiritual balance) and determinants of health. RESULTS: Rates of reported wellness were high among those who were frail, ranging from 56.7% reporting physical balance to 71.6% reporting mental balance. Three key elements were associated with wellness: the availability of resources, individual lifestyle factors, and cultural connection and identity. DISCUSSION: Our findings provide a profile of strength and wellness among older First Nations adults living with frailty.

Practitioner Empowerment, Older Adult Mistreatment, and Dementia.

Although some studies have revealed practitioner disempowerment in cases of older adult mistreatment, this experience is poorly understood. In addition, dementia and contextual influences further complicate cases; yet,  little is known about the experience of practitioners with this complexity. This critical inquiry, based on Critical social theory, critical consciousness, and professional agency, aimed to address these gaps. Fifty-one practitioners from diverse health care and social service disciplines from rural and urban communities in Northeastern Ontario participated in interviews, journals, and focus groups. Analysis of data revealed the need for empowerment within a perpetual cycle of non-resolution, to refocus on legal clarity and intervention versus the current legal complexity and education focus, and to develop adequate infrastructure to support interprofessional efforts. The infusion of this knowledge into policy, practice, and research has great potential to improve outcomes for older adults with dementia who are mistreated in their homes.

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.