Promoting diverse perspectives: Addressing health disparities related to Alzheimer's and all dementias.

Dementia research lacks appropriate representation of diverse groups who often face substantial adversity and greater risk of dementia. Current research participants are primarily well-resourced, non-Hispanic White, cisgender adults who live close to academic medical centers where much of the research is based. Consequently, the field faces a knowledge gap about Alzheimer's-related risk factors in those other groups. The Alzheimer's Association hosted a virtual conference on June 14-16, 2021, supported in part by the National Institute on Aging (R13 AG072859-01), focused on health disparities. The conference was held entirely online and consisted of 2 days of core programming and a day of focused meetings centered on American Indian and Alaska Natives and on LGBTQIA+ populations. Over 1300 registrants attended discussions focused on the structural and systemic inequities experienced across diverse groups, as well as ways to investigate and address these inequities.

An online diabetes nutrition education programme for American Indian and Alaska Native adults with type 2 diabetes: perspectives from key stakeholders.

OBJECTIVE: To explore stakeholder perspectives regarding online diabetes nutrition education for American Indians and Alaska Natives (AI/AN) with type 2 diabetes (T2D). DESIGN: Qualitative data were collected through focus groups and interviews. Focus group participants completed a brief demographic and internet use survey. SETTING: Focus groups and community participant interviews were conducted in diverse AI/AN communities. Interviews with nationally recognised content experts were held via teleconference. PARTICIPANTS: Eight focus groups were conducted with AI/AN adults with T2D (n 29) and their family members (n 22). Community participant interviews were conducted with eleven clinicians and healthcare administrators working in Native communities. Interviews with nine content experts included clinicians and researchers serving AI/AN. RESULTS: Qualitative content analysis used constant comparative method for coding and generating themes across transcripts. Descriptive statistics were computed from surveys. AI/AN adults access the internet primarily through smartphones, use the internet for many purposes and identify opportunities for online diabetes nutrition education. CONCLUSIONS: Online diabetes nutrition education may be feasible in Indian Country. These findings will inform the development of an eLearning diabetes nutrition education programme for AI/AN adults with T2D.

Diabetes-by-Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes.

Childhood type 1 diabetes is increasing globally and requires meticulous at-home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers' management strategies has lagged. We show parents' intense, all-encompassing work to preempt a disastrous drop in their child's glucose as a stress-path to the virtual embodiment of their child's condition. That is, parents acquire diabetes-by-proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Diabetes-by-proxy names the parents' experience and validates clinical attention to them as they cope with their crucial caregiving commitment.

American Indian Diabetes Beliefs and Practices: Anxiety, Fear, and Dread in Pregnant Women With Diabetes.

Diabetes among American Indian (AI) people is a health disparities condition that creates excessive morbidity and mortality. This research delineated culturally constructed models of type 2 diabetes among 97 pregnant women in two large AI nations in Oklahoma. The data analysis of explanatory models of type 2 diabetes revealed the participants' intense anxiety, fear, and dread related to the condition. The sample was further stratified by combinations of diabetes status: 1) absence of type 2 diabetes (n = 66), 2) type 2 diabetes prior to pregnancy (n = 4), and 3) gestational diabetes (n = 27). Patients were interviewed regarding perceptions of the etiology, course, and treatment of diabetes. The research incorporated an integrated phenomenologic and ethnographic approach using structured and semi-structured interviews to yield both quantitative and qualitative data. General findings comprised three main categories of patients' concerns regarding type 2 diabetes as an illness: 1) mechanical acts (i.e., injections), 2) medical complications, and 3) the conceptual sense of diabetes as a "severe" condition. Specific findings included significant fear and anxiety surrounding 1) the health and well-being of the unborn child, 2) the use of insulin injections, 3) blindness, 4) amputation, and 5) death. Paradoxically, although there was only a slight sense of disease severity overall, responses were punctuated with dread of specific outcomes. The latter finding is considered consistent with the presence of chronic diseases that can usually be managed but present risk of severe complications if not well controlled.

Cultural Construction of Dementia Progression, Behavioral Aberrations, and Situational Ethnicity: An Orthogonal Approach.

Neurodegenerative diseases, such as Alzheimer's disease and related dementias, induce caregivers already struggling to cope with the behavioral aberrations of dementia to constantly update their cultural construction of the disease because the outward symptoms used to interpret it are in constant flux. For ethnic minority caregivers, particularly, coping is a process of tracking a moving set of symptoms, making cultural sense of them across time, and negotiating a medical environment that can be hostile to them because of their "nonstandard" cultural health beliefs. In the midst of a constantly changing disease, achieving optimal communications with the medical establishment causes the ethnic minority caregivers to change their behaviors to better fit the expectations of the clinic, then retreat to their own cultural comfort zone only to continue oscillating between cultures for the duration of their caregiving responsibilities. Ethnic minority dementia caregiving is conceptualized here from an orthogonal perspective in which the moving elements of the ethnic minority dementia experience intersect in numerous ways and produce many coping strategy permutations corresponding to the evolving disease and its cultural constructs.

American Indian Diabetes Prevention Center: Challenges of a Health Equity Quest.

American Indians are classified by the federal government as a "health disparities population" with significant excess morbidity and mortality caused by diabetes and its many complications. The National Institute on Minority Health and Health Disparities of the National Institutes of Health has created a national program titled "Centers of Excellence" whose primary goal is the elimination of health disparities. This article describes the American Indian Diabetes Prevention Center at the University of Oklahoma Health Sciences Center, College of Public Health, in terms of its intellectual foundations rooted in a biocultural analytic model and operationalized by an interdisciplinary functioning staff. Challenges are described in terms of the monumental task of impacting health disparity conditions and in the exigencies of research collaborations with American Indian Nations located in rural areas remote to the University's health sciences urban-based hub.

Perceptions and Concerns Regarding Diabetes Mellitus During Pregnancy Among American Indian Women.

Diabetes among American Indian (AI) people is a. condition that creates excessive morbidity and mortality and is a significant health disparity. This research delineated culturally constructed models of diabetes mellitus (DM) among 97 pregnant women in 2 large AI Nations to Oklahoma. Analysis of data revealed intense anxiety, fear, and dread related to DM during pregnancy. The sample was stratified by DM status: (a) absence of DM (n = 66), (b) DM prior to pregnancy (n = 4), and (c) gestational (n = 27). Structured and semistructured interviews elicited patient culturally based explanatory models (EMs) of etiology, course, and treatment. The research incorporated an integrated phenomenologic and ethnographic approach and yielded both quantitative and qualitative data. General findings comprised the following main categories of patients' concerns regarding DM as an illness: (a) care-seeking behaviors, (b) medical management, (c) adherence and self-management, (d) complications, and (e) the conceptual sense of DM as a "severe" and feared condition. Many findings varied according to acculturation status, but all included significant fear and anxiety surrounding (a) the health and well-being of the unborn child, (b) the use of insulin injections, (c) blindness, (d) amputation, and (e) death, but with (f) a paradoxically lowered anxiety level about diabetes severity overall, while at the same time expressing extreme dread of specific outcomes. The latter finding is considered consistent with the presence of chronic conditions that can usually be managed, yet still having risk if severe.

Promoting diversity in clinical trials: insights from planning the ALUMNI AD study in historically underrepresented US populations with early symptomatic Alzheimer's disease.

Clinical trial participation across disease areas, including Alzheimer's disease (AD), has been biased towards White participants of European ancestry. To support clinical decision-making across diverse populations, we must recognize and address barriers to trial participation. To inform the design of ALUMNI AD, a trial focused on historically underrepresented AD populations, we held advice-seeking fora with key stakeholders to understand barriers and identify potential solutions to maximize trial participation of underrepresented racial and ethnic groups in the US. Strategies identified from this process include: obtaining and implementing recommendations from community stakeholders; establishing a simple and inclusive prescreening and screening process; supporting participants and care partners; identifying and activating community-centric clinical sites; and demonstrating community commitment. While ALUMNI AD did not commence, we hope that our insights could be incorporated into future studies to improve diversity, equity, and inclusion in AD clinical research. Funding: This study was sponsored by Genentech, Inc.

APOE ε4 Allele Frequency Among Cognitively Healthy Members of an Ojibwe Tribal Nation.

Objectives: APOE ε4 frequency varies by geography and ancestry. We provide data regarding the frequency of this allele in the Ojibwe people, the fifth largest Indigenous people in the United States. Methods: Population study including 33 cognitively normal older individuals of an Ojibwe Tribal Nation (total population: 984; all with ≥25% Ojibwe ancestry). Results: APOE ε4 allele frequency was 19.7%, which is comparable with other cognitively normal American Indian, Alaskan Native, and non-Hispanic White populations of the United States and Europe, with the exception of a lower frequency among Choctaw Nation of Oklahoma participants with >50% American Indian ancestry. Discussion: While some global populations have very low APOE ε4 prevalence, this allele appears common among American Indian Tribal Nations included thus far in the United States. Because APOE ε4 is a cornerstone for novel diagnostics and therapeutics for Alzheimer disease (AD), future study is warranted to understand ancestry-dependent effects of APOE ε4 on AD risk and biology.

Characteristics of Recurrent Visions of the Nonphysical World Among Cognitively Unimpaired Elders of the Ojibwe Tribal Nation.

Importance: Visual hallucinations are a core feature of dementia with Lewy bodies and primary psychiatric disease, yet identification of a hallucination vs normal spiritual experience depends on cultural context. Almost no information exists in the medical literature regarding normal spiritual experiences in American Indian participants in the context of a neurocognitive evaluation. Objective: To assess the characteristics of a normal spiritual experience in an Ojibwe Tribal Nation. Design, Setting, and Participants: This prospective, cross-sectional study was conducted between August 1, 2021, and August 31, 2022, among an Ojibwe Tribal Nation in northern Minnesota. Participants were evaluated at their tribal nation clinic. Cognitively unimpaired tribal Elders who were enrolled members of the tribal nation and aged 55 years or older were invited to participate via fliers, radio advertisements, and health fair presentations. Thirty-seven tribal Elders volunteered. Main Outcomes and Measures: Each participant was asked whether they experienced hallucinations or visions of people, animals, or objects that are not part of the physical world. This was an a priori formulated question and part of a comprehensive neurocognitive evaluation consisting of history and physical examination (including cognitive screening with a subspecialty-trained behavioral neurologist); blood tests for metabolic, nutritional, and thyroid conditions; and noncontrast magnetic resonance imaging brain scan. Four patients were excluded from the present analysis due to having mild cognitive impairment or dementia. Results: Thirty-three cognitively unimpaired tribal Elders (mean [SD] age, 66.0 [7.5] years; 22 women [67%]) were included. Sixteen (48%) answered affirmatively, reporting recurrent visions of the nonphysical world. Generally, these visions were well formed, benevolent in nature, and transient; started in preadolescence; involved spirits or ancestors; and were congruent with cultural and spiritual beliefs of the Ojibwe people. No patients had accompanying dream enactment behavior, dysautonomia, parkinsonism, sleep transition-related hallucinations, or moderate to severe depression to suggest a prodrome of an α-synucleinopathy, hypnopompic or hypnagogic hallucinations, or psychosis. Conclusions and Relevance: Although based on only 1 Ojibwe Tribal Nation, this study suggests that formed visions of the nonphysical world are common among cognitively healthy Ojibwe individuals and can represent normal spiritual experiences. Clinicians would benefit from careful consideration of cultural or spiritual context to avoid misdiagnosis of neuropsychiatric disease.

Establishing a Framework for Gathering Structural and Social Determinants of Health in Alzheimer's Disease Research Centers.

Structural and social determinants of health (SSDoH) are environmental conditions in which individuals are born, live, learn, work, play, worship, and age that affect health, functioning, and quality-of-life outcomes across the life course. Growing evidence suggests that SSDoH can help to explain heterogeneity in outcomes in Alzheimer's disease and Alzheimer's disease and related dementias (AD/ADRD) research and clinical practice. The National Institute on Aging has prioritized collecting SSDoH data to elucidate disease mechanisms and aid discovery of disease-modifying treatments. However, a major nexus of AD/ADRD research, the national network of Alzheimer's Disease Research Centers (ADRCs), collects few SSDoH data. We describe a framework for feasibly gathering and modeling SSDoH data across ADRCs. We lay out key constructs, their measures, and empirical evidence for their importance in elucidating disease and prevention mechanisms. Toward a goal of translation, the framework proposes a modular structure with a core set of measures and options for adjunctive modules. We describe considerations for measuring SSDoH in existing geographically and culturally diverse research cohorts. We also outline a rationale for universal implementation of a set of SSDoH measures and juxtapose the approach with alternatives aimed at collecting SSDoH data.

Food Insecurity and Associated Challenges to Healthy Eating Among American Indians and Alaska Natives With Type 2 Diabetes: Multiple Stakeholder Perspectives.

Objective: To examine stakeholder perspectives on food insecurity and associated challenges to healthy eating among American Indian and Alaska Native (AI/AN) adults with type 2 diabetes (T2D). Methods: Focus groups and interviews were conducted with purposively selected stakeholders: AI/ANs with T2D, their family members, healthcare administrators, nutrition and diabetes educators, and national content experts on AI/AN health. Two coders analyzed transcripts using the constant-comparison method. Results: Key themes included (1) rural- and urban-dwelling AI/ANs experience different primary food security and associated challenges; (2) factors contributing to food insecurity extend beyond cost of healthy food; and (3) barriers to consuming fresh, healthy food include cost, preparation time, limited cooking knowledge, and challenges with gardening. Discussion: Resources for AI/ANs with T2D who experience food insecurity and associated challenges to healthy eating should be tailored based on urban versus rural location and should address cost and other barriers to consumption of fresh fruits and vegetables.

Technology-based Health Education Resources for Indigenous Adults: A Scoping Review.

Indigenous peoples experience a disparate burden of chronic diseases and lower access to health education resources compared with other populations. Technology can increase access to health education resources, potentially reducing health inequities in these vulnerable populations. Although many Indigenous communities have limited access to the Internet, this barrier is decreasing as tribes and Indigenous-serving organizations work to improve TechQuity. Using Arksey and O'Malley's framework, we conducted a scoping literature review to identify technology-based health education interventions designed for Indigenous adults. We searched multiple databases, limiting papers to those written in English, describing interventions for participants 18 years of age or older, and published between 1999-2020. The review yielded 229 articles, nine of which met eligibility criteria. Findings suggest a paucity of technology-based health education interventions designed for Indigenous peoples and limited testing of the existing resources. Future health disparity research should focus on development and rigorous testing of such interventions.

Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood.

This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.

The Design of a Multi-component Intervention to Promote Screening Mammography in an American Indian Community: The Native Women's Health Project.

BACKGROUND: Breast cancer is an important public health issue among American Indian/Alaska Native (AI/AN) women in the US. This article describes the design and implementation of a culturally sensitive intervention to promote breast health among AI/AN women through a hybrid model that incorporates clinical and community-based approaches. This is one of the first studies using this model addressing breast cancer disparities among AI/AN populations in the US. METHODS: The Theory of Planned Behavior was used as the guiding framework of the intervention and Community Based Participatory Research was the primary vehicle for the intervention planning and implementation. Three preliminary studies took place that aimed to identify qualitatively and quantitatively what deterred or encouraged AI women to get past or future mammograms. The research results were shared with community members who, through a prioritization process, identified the theoretical focus of the intervention and its corresponding activities. The priority population consisted of AI women ages 40-74, with no recent mammogram, and no breast cancer history. RESULTS: The intervention centered on the promotion of social modeling and physician recommendation. The main corresponding activities included enhancing patient-physician communication about screening mammography through a structured dialogue, receipt of a breast cancer brochure, participation in an inter-generational discussion group, and a congratulatory bracelet upon receipt of a mammogram. Environmental and policy related changes also were developed. CONCLUSION: Creating a theory-based, culturally-sensitive intervention through tribal participatory research is a challenging approach towards eliminating breast cancer disparities among hard-to-reach populations.

Apolipoprotein E4 and tau allele frequencies among Choctaw Indians.

Apolipoprotein genotyping and tau haplotyping were carried out on a series of cases with dementia and controls from the Choctaw Nation of Oklahoma. Both the Apolipoprotein E4 allele frequency and the tau H2 haplotype frequency were low in the Choctaw compared with Caucasians and there was the possibility that the association between dementia and the E4 allele was weaker than in Caucasians.

Chemical (VX) terrorist threat: public knowledge, attitudes, and responses.

This article reports the results of a study of people's perceptions and reactions to a hypothetical terrorist attack involving a chemical agent (specifically, the nerve agent VX). Thirteen focus groups composed of 8 to 12 participants each were conducted using trained moderators. To achieve a broad representation of perspectives, the groups were conducted in several regions and included urban and rural locations. In addition, a variety of population groups, such as African Americans, Hispanics, American Indians, Asians, and people with English as a second language, were included in the study. Findings demonstrated fear, fatalism, and unfulfilled information needs related to the threat agent. To better prepare the public for VX threats or threats from other highly toxic chemical agents, it will be important to emphasize that VX exposure can be avoided or reduced, that VX effects can be treated, and that VX can be survived if appropriate protective measures are taken. Related findings from the focus groups are that participants preferred television, radio, and the Emergency Alert System for emergency messages and that people prefer to hear information about a chemical attack from a well-known, well-respected public figure or from a content expert on chemical attacks, protective actions, and health. In addition, local television meteorologists were identified as a category of trusted conveyers of important information in relation to chemical terrorist attacks.

Cultural factors in dementia: perspectives from the anthropology of aging.

The plasticity of cultural constructs of dementia is shown in two societies: Japan, and an American Indian nation. By demedicalizing the analysis of dementia, the social and cultural factors that influence recognition of symptoms, help-seeking strategies, caregiving behaviors, and adherence to biomedical and sociocultural coping advice become more obvious. Notably in the Japanese example, motivation toward primary prevention behavior is clear in the context of boke since it is an undesirable condition of frailty and cognitive decline considered to be preventable by remaining active. In the American Indian example, the hallucinatory symptoms are positively valued communications with the "other side" rather than pathologically defined. The findings show the need to extend dementia models beyond the biomedical in order to optimize prevention and management of this complex, chronic condition.