Jordan P. Lewis

Introduction: The behavioral health (BH) needs of older adults are unique, increasing, and, too often, poorly understood. Methods: Oregon established the first state-level center of excellence in the United States focused on the BH of older adults via a state–university–community partnership. Oregon's Center of Excellence for Behavioral Health and Aging (OCEBHA) was conceptualized by the state health authority and initially funded using a block grant from the Substance Abuse and Mental Health Services Administration. Results: OCEBHA seeks to expand the capacity of health and social programs and providers to deliver BH services for older adults with serious mental illness and substance use disorders through translational research, workforce development, and policy innovation. Conclusion: This review article describes the United States’ and Oregon's BH and aging landscape, highlighting the disconnects between research evidence, clinical treatment/intervention, and policy implementation. It outlines the rationale for establishing centers like OCEBHA, which was designed to bridge these gaps. By detailing OCEBHA's structure and focus areas—translational research, workforce development, and policy innovation—the article shows how this model can help align evidence-based practices with service delivery and policy. It also offers a roadmap for other states seeking to strengthen support for older adults with BH needs.

Geographical remoteness, limited resources, and socioeconomic disparities contribute to the migration of rural Alaska Native Elders to urban areas to access medical services and resources, improve economic situations, or reunite with family. We compared the discourse of 12 Elders in Anchorage who previously lived in four remote traditional villages in the Norton Sound region (ages 60-84) and 13 Elders in those villages (ages 48-80). Using Gee's discourse analysis framework, two patterns emerged detailing cultural effects on identity and Eldership, illuminating differences in the self-evaluation of successful aging based on cultural influences and the role of contextual factors.

Predominantly Western-based biomedical models of successful aging have been used to research, understand, and explain successful aging among diverse populations. With an increasingly heterogeneous older adult population nationwide, scholars have been exploring Indigenous understandings of successful aging. To add to the accumulation of knowledge of diverse Alaska Native populations, this study involved semi-structured qualitative interviews with 20 Unangan Elders from the Aleutian and Pribilof Islands. This community-based participatory research study explores the aging experiences and conceptualization of successful aging of these Elders from this remote and culturally distinct region of Alaska. Thematic analysis was employed to identify themes related to successful aging within this specific region, which supported our previous four themes, or characteristics, of Alaska Native successful aging: physical health, social support and emotional well-being, generativity as a traditional way of life, and community engagement and Inidgenous cultural generativity. Each of these themes or characteristics of Eldership is intertwined and together support successful aging within two remote communities in the Bering Sea. The findings of this study illuminate how Alaska Native Elders can live in geographically diverse regions of the State, yet the values and teachings they possess on successful aging possess the same cultural values and teachings. This study highlighted two new emerging constructs that influence Alaska Native Elders' successful aging based on geographical location. Findings contribute to the thematic saturation of the four main successful aging domains while outlining the importance of future research to conduct deeper investigations into the role of environment and history on Elders’ perceptions and understanding of aging.

Background: This paper explores Indigenous understandings of the progression of dementia through the early/mild, middle/moderate, and late/severe stages of dementia through the experience of on‐reservation dementia care providers. There is scant but growing literature on Indigenous understandings of dementia but to our knowledge none have examined how Indigenous conceptualization of the illness stages relate to the biomedical staging categories which dominate dementia education and care models.Method: We conducted sequential focus groups (SFGs) with the same local health care staff/formal caregivers that work with Indigenous older adults (n = 17) over 4‐5 sessions (n = 14) in four diverse Indigenous reservation communities in USA and Canada. The SFG design provided an opportunity for a progressive and deep discussion of perceptions of early, middle, and late stages of dementia among their Indigenous patients. SFGs were recorded, transcribed, thematically coded and grouped according to the Alzheimer’s Association (AA) definitions of early, middle, and late‐stage dementia.Result: These data suggest that Indigenous experiences with the stages of dementia do not align with the AA framework. Specifically, early dementia is not widely recognized as an illness or part of the disease trajectory; rather, moderate symptoms in the AA framework are most frequently described as the beginning of dementia. Participant descriptions of symptoms in the middle and late stages were more closely aligned with Indigenous lived experience and beliefs. Significantly, a return to childhood or infancy was widely used to describe late‐stage dementia. Participant discussions revealed that they gave prominence to periods of transitions and the overall experience as opposed to a segmented/staged approach.Conclusion: Indigenous dementia illness models may not align with biomedical approaches to disease staging, potentially leading to inappropriate and ineffective clinical conversations and dementia education efforts. For example, while infantilization of elderly individuals is usually advised against by professionals, describing a loved one as returning to an earlier stage of their life aligns with Indigenous teachings of the circle of life. Further ethnographic research is needed with Indigenous family caregivers and persons living with dementia to verify these findings and provide insight into culturally safe care.

Background: The proportion of the Native population aged 65+ is projected to increase between 2015 and 2045, from 7‐12%, and informal caregivers and health care providers are ill‐prepared to meet the demand of Alzheimer’s Disease and related disorders (ADRD). There is an increasing urgency to better understand Alaska Native views of ADRD.Method: Guided by Kleinman’s explanatory model of illness, a qualitative, research design was utilized to gather data on experiences with ADRD. 21 interviews with Alaska Native caregivers and 12 interviews with health care providers in rural and urban communities were completed. Using Nvivo qualitative software, thematic analysis was used to obtain cultural perspectives on ADRD. This study was approved by the University and tribal review boards.Result: Many Alaska Natives view ADRD as a natural part of the aging process, resulting in not always seeking medical care. Caregivers challenges included family denial, exhaustion and isolation, and family distancing themselves due to fear and limited understanding of ADRD. Caregiving benefits included spending time with older adult, learning family history, and sharing experiences with other caregivers. Healthcare provider challenges included rigidity of the healthcare system, no research on Alaska Natives, limited health literacy, limited community resources, and no knowledge of Alaska Native views of ADRD.Conclusion: Understanding the cultural underpinnings of ADRD provides insight into how health care providers can integrate cultural beliefs into treatment to improve the processes of care that may mitigate the impact of ADRD on individuals and families. Culturally‐responsive education and training about ADRD is crucial to connecting Alaska Natives with ADRD to care that can assist them in aging more comfortably

Background: There is a cultural value among Alaska Natives to care for their Elders and this commitment applies to all Elders, regardless of health status or cognitive health. Caregiver duties can lead to stress, isolation, and depression that negatively impact their overall health and wellbeing. Despite the challenges, these caregivers emphasized the unexpected blessings, which served as coping mechanisms and providing meaning and purpose to their caregiver role.Method: Interviews were conducted with 22 Alaska Native caregivers for Alaska Natives with Alzheimer’s Disease and Related Disorders (ADRD) in rural and urban communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We employed directed content analysis to examine the caregivers’ experiences of ADRD and the unexpected blessings associated with being a caregiver.Result: Alaska Native caregivers shared the challenges associated with caregiving duties, and the lack of education, awareness, and available resources exacerbated their stress and challenges. As their family member experienced changes related to the ADRD, the blessings took different forms and served different purposes. Spending more time with their family member, remembering family history, engaging in generative behaviors, and strengthening intergenerational relationships were the most frequently discussed blessings. Focusing on these blessings enabled caregivers to continue to find meaning in this role and carry on their cultural values and traditions.Conclusion: This study shifts the focus of caregiving research to highlight the unexpected blessings. The focus on strengths of caregiving and sharing these stories has the potential to provide current and future caregivers to step into this role with a different perspective, or at least not just hear of the challenges and barriers associated with ADRD caregiving.

Background: Research with Indigenous populations in North America has consistently demonstrated divergent views on caregiving for people living with dementia (PLWD) compared to Western biomedical approaches. Few studies to date have applied strengths‐based approaches and, as a result, an Indigenous caregiving framework appropriate for on‐reserve/reservation populations has yet to be created. In this paper we share research findings that can be used to initiate strategies for culturally appropriate, sustainable, and supported care strategies for Indigenous PLWD.Method: We used a community‐based participatory approach to conduct ethnographic research in a culturally safe way among four Indigenous communities in the US and Canada. Community‐based researchers conducted key informant interviews with dementia administrators and providers (n = 35), and sequential focus groups with local health care staff/formal caregivers that work with Indigenous older adults (14 sessions, n = 17). Data were coded in QSR NVivo and analyzed using a phenomenological framework.Result: Participants described numerous assets available to Indigenous communities that can help PLWD age in place, based in a wholistic orientation. Main qualitative themes emerging from the analysis include: the need for wholistic models of care; the value and importance of family caregiving; the role of social/community support; the value of caring for the PLWD in the home for as long as possible; and the need for community services to support caregivers. Indigenous values, past experiences with health systems/colonization, and lived experiences of dementia were important underlying factors informing an Indigenous caregiving framework appropriate for on‐reserve/reservation populations.Conclusion: Western models of caregiving for PLWD, especially the eventual placement of PLWD in care facilities, do not fit with Indigenous value systems and teachings. Relational, family, and community‐based care is a culturally appropriate form of care for most elders in Indigenous communities. This model will be most effective when culturally appropriate community support services such as personal support and home care nursing services, as well as adequate respite, are included. Further research with family caregivers and PLWD will be necessary to further our understanding of this Indigenous care model and together with this study will form the basis for a community‐based caregiving intervention.

Background: The Memory Keepers Medical Discovery Team (MK‐MDT) was established in 2016 to address brain health equity for Indigenous and rural populations. Indigenous populations are under‐represented in Alzheimer’s disease and related dementias (ADRD) research studies and clinical trials, yet there is a dire need to address ADRD disparities in this population. In this paper we outline our research approach and studies underway at the MK‐MDT that are designed to address the ADRD disparity in Indigenous populations in the US and Canada. We highlight our flagship study “Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia – Research and Engagement” (ICARE) as a key foundational ethnographic study necessary to advance the field.Method: The MK‐MDT incorporates a community‐based participatory research (CBPR) approach with two‐eyed seeing. Two‐eyed seeing ensures the inclusion and valuing of Indigenous knowledge throughout the research process. In ICARE, we maintain a consistent focus on ethnographic research with Indigenous communities to ensure deep understanding of how culture and context shape the dementia experience. Interviews, sequential focus groups, participant observation and fieldnotes are used to populate an ethnographic database on the lived experience of dementia in Indigenous populations. We incorporate a diversity perspective by working with multiple Indigenous communities for each study. We invest in community engagement infrastructure such as community advisory committees, elder advisors, community‐based researchers and outreach workers to ensure our methods follow local ethical protocols, is culturally safe, and community controlled.Result: We have successfully initiated NIH‐funded programs of research aimed at reducing dementia disparities. ICARE was launched in 2018 and included 54 interviews and 14 sequential focus group sessions (n = 17) in four diverse Indigenous communities, establishing the first stage of a robust ethnographic database. Findings support the existence of an Indigenous specific understanding of dementia that impacts the dementia care experience.Conclusion: The CBPR approach coupled with two‐eyed seeing has allowed for authentic engagement with multiple Indigenous communities and has supported the collection of ethnographic data that can be used to develop culturally appropriate health promotion materials and interventions. The community‐based infrastructure that has been established is currently supporting multiple projects, including clinical research.