Extra/ordinary medicine: Toward an anthropology of primary care.

Primary care is at the forefront of healthcare delivery. It is the site of disease prevention and health management and serves as the bridge between communities and the health care system As ethnographers of primary care, in this article we discuss what is gained by situating anthropological inquiry within primary care. We articulate how anthropologists can contribute to a better understanding of the issues that emerge in primary care. We provide a review of anthropological work in primary care and offer empirical data from two ethnographic case studies based in the United States, one focused on social risk screening in primary care and the other examining the diagnosis and care of people with dementia in primary care. Through these cases, we demonstrate how research of and within primary care can open important avenues for the study of the multidimensionality of primary care. This multidimensionality is apparent in the ways the medical field addresses the social and structural experiences of patients, scope of practice and disciplinary boundaries, and the intersection of ordinary and extraordinary medicine that emerge in the care of patients in primary care.

Funding for Refugee Health Research From the National Institutes of Health Between 2000 and 2020.

Importance: The US has historically resettled more refugees than any other country, with over 3.5 million refugees since 1980. The National Institutes of Health (NIH) is the largest public funder of biomedical research and development, but its role in mitigating many health disparities refugees experience through its funded research remains unknown. Objective: To examine the NIH's research funding patterns on refugee health research over the last 2 decades. Design, Setting, and Participants: Secondary analysis of NIH-funded grants between 2000 and 2020 using a cross-sectional study design. The NIH Research Portfolio Online Reporting Tools database was used to find relevant grants. Data were analyzed from November 2021 to September 2022. Main Outcomes and Measures: NIH grants awarded by year, state, grant type, research area, funding institute, grant duration, and amount funded. Results: Of 1.7 million NIH grants funded over the 20-year study period, only 78 addressed refugee health. Funded grants were mostly training grants (23 grants [29%]), followed by hypothesis-driven research (R01 grants; 22 grants [28%]), pilot or preliminary investigation proposals (13 grants [17%]), and other types of grants (20 grants [26%]). The most studied research domain was mental health (36 grants [46%]), followed by refugee family dynamics and women's and children's health (14 grants [18%]). A total of 26 grants (33%) were funded by the National Institute of Mental Health and 15 (19%) were funded by the National Institute of Child Health and Human Development. Most grants were US-based (60 grants [76%]) and the state of Massachusetts received the greatest amount of funding ($14 825 852 [18%]). In 2020, the NIH allocated about $2.3 million to refugee health research, or less than 0.01% of its $42 billion budget that year. The number of grants funded in each time period did not always reflect changes in the number of refugees resettled in the US over the years. Conclusions and Relevance: This cross-sectional study found that there remain significant gaps in the understanding of and interventions in the health research needs of refugees locally and along the migratory route. To close these gaps, the NIH should increase its investments in comprehensive studies assessing the physical, mental, and social well-being of this expanding population. This can be achieved by ensuring that all NIH institutes allocate budgets specifically for refugee health research and extend support for the training of refugee researchers.

Primary Care Pracitioner Perspectives on the Role of Primary Care in Dementia Diagnosis and Care.

Importance: Although the barriers to dementia care in primary care are well characterized, primary care practitioner (PCP) perspectives could be used to support the design of values-aligned dementia care pathways that strengthen the role of primary care. Objective: To describe PCP perspectives on their role in dementia diagnosis and care. Design, Setting, and Participation: In this qualitative study, interviews were conducted with 39 PCPs (medical doctors, nurse practitioners, and doctors of osteopathic medicine) in California between March 2020 and November 2022. Results were analyzed using thematic analysis. Main Outcomes and Measures: Overarching themes associated with PCP roles in dementia care. Results: Interviews were conducted with 39 PCPs (25 [64.1%] were female; 16 [41%] were Asian). The majority (36 PCPs [92.3%]) reported that more than half of their patients were insured via MediCal, the California Medicaid program serving low-income individuals. Six themes were identified that convey PCPs' perspectives on their role in dementia care. These themes focused on (1) their role as first point of contact and in the diagnostic workup; (2) the importance of long-term, trusting relationships with patients; (3) the value of understanding patients' life contexts; (4) their work to involve and educate families; (5) their activities around coordinating dementia care; and (6) how the care they want to provide may be limited by systems-level constraints. Conclusions and Relevance: In this qualitative study of PCP perspectives on their role in dementia care, there was alignment between PCP perspectives about the core values of primary care and their work diagnosing and providing care for people living with dementia. The study also identified a mismatch between these values and the health systems infrastructure for dementia care in their practice environment.

Moral reasoning through the eyes of persons with behavioral variant frontotemporal dementia.

Introduction: Persons with behavioral variant frontotemporal dementia (bvFTD) can exhibit apparently antisocial behaviors. An example is their tendency to adopt utilitarian choices in sacrificial moral dilemmas, i.e. harmful actions to promote overall welfare. Moral cognition models interpret such tendencies as deriving from a lack of emotional engagement and selective impairment in prosocial sentiments. Methods: We applied a qualitative approach to test those theoretical assumptions and to further explore the emotional experiences and values of people with bvFTD while they contemplate moral scenarios. We conducted semistructured interviews with 14 participants: 7 persons with bvFTD and 7 older healthy controls. Transcripts were coded using ATLAS.ti 5.0. Results: During the moral reasoning task, persons with bvFTD reported more positive emotions than negative and showed significantly less cognitive precision in their moral reasoning compared to controls. Persons with bvFTD also organized their choices predominantly around kindness and altruism, and their responses reflected higher rule compliance. Our study showed that bvFTD persons' utilitarian responses to moral dilemmas did not arise from an emotionally disengaged or antisocial perspective. Instead, they were underpinned by positive emotionality and prosocial values. Discussion: These findings enrich current understandings of moral cognition and highlight the importance of incorporating mixed methods approaches in dementia research that take into consideration the viewpoint of cognitively impaired individuals.

"Out of the clear blue sky she tells me she loves me": Connection experiences between caregivers and people with dementia.

BACKGROUND: Dementia can impede the relationship and connection between the person with dementia (PWD) and their caregiver. Yet, caregiving in dementia also offers opportunities for connection, which has implications for caregiver and PWD well-being. In this qualitative study, we describe and characterize ways caregivers felt connected to the person with dementia they care for. METHODS: We conducted a telephone-based survey with caregivers of people with dementia. For this paper, we analyzed responses to an open-ended question focused on when caregivers feel most connected to the person they are caring for. Responses were analyzed and coded and themes were identified through an iterative process involving a multidisciplinary team of researchers and clinicians. RESULTS: 437 caregivers participated in this study. We identified two domains of connection: activity-based and emotion-based connections. Within activity-based connections, the following themes emerged: everyday activities; reminiscing; activities of caregiving; novel experiences; and time with family and friends. Within emotional connections, the following themes emerged: expressions of love, appreciation, and gratitude; physical affection; sharing an emotion or emotional experience; and times when the PWD seems like "themself" again. CONCLUSIONS: Findings provide insights into ways caregivers experience a sense of connection with the person they care for. There is a call to shift away from focusing on reducing stress and toward optimizing positive experiences as a way to better support caregivers' health and well-being. Interventions that leverage these insights to foster caregiver - PWD connection could lead to better health and well-being for both members of the dyad. The amplification of a positive experience may be particularly important for caregivers who are struggling with limited support or respite. Clinicians may be interested in using a question about connection as a way to more fully understand a caregiver's current experience.

Perceptions of and Knowledge Acquisition about Brain Health and Aging among Latin American Immigrants:A QualitativePaper.

OBJECTIVES: Older immigrants of Latin American descent are disproportionately impacted by dementia, yet little is known about their dementia- and brain health-related knowledge. We explored perspectives on brain health and aging in this population to inform the development of culturally-relevant interventions. METHODS: Individual, semi-structured interviews were conducted with 30 Spanish-speaking immigrants over 60. Questions addressed knowledge about the brain, perceptions of healthy and unhealthy aging, ideas of how to take care of one's brain, and where knowledge was acquired. Responses were analyzed using thematic analysis. RESULTS: The following themes emerged: (1) Descriptions of the brain varied, from anatomy, cognition, and psychology to disease. (2) Perceptions of healthy aging included independence, memory, emotions, and orientation. (3) Ideas of how to care for the brain included physical, social, and cognitive engagement. (4) Knowledge was acquired in childhood, communities, healthcare settings, careers, and media. CONCLUSIONS: Results showed significant variability in knowledge. Findings may be leveraged to improve interventions that address brain health literacy disparities among older Latin American immigrants. CLINICAL IMPLICATIONS: Takeaways involve increasing education about the structure and functions of the brain, promoting realistic understandings of what nonnormative brain aging entails, and increasing knowledge of empirically-supported maintenance approaches. Dissemination may be increased via healthcare providers, community centers, churches, and media.

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

INTRODUCTION: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD). METHODS: eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis. RESULTS: We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis. CONCLUSIONS: Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.

A mindfulness-based intervention adapted to dementia caregivers: A study protocol for a randomized clinical control trial.

Dementia caregiving, besides encompassing various challenges in tandem to the diagnosis of the care recipient, is associated with decreased psychological well-being and mental health. Accordingly, caregivers' wellbeing has an impact on the quality of care they provide and on the relationship quality with the person in their care. The aim of the present study is to examine the effectiveness of a mindfulness-based intervention on relational and psychological wellbeing, tailored to the needs of dementia caregivers. This clinical trial (NCT04977245) will apply a randomized controlled mixed method design. Caregivers will be randomly allocated to either the mindfulness intervention or the active control group. The intervention arm is based on experiential learning and is targeted to promote caregivers' well-being and empowerment. Assessments will include, standardized self-report questionnaires, task performance measures, and qualitative measures. All assessments will be held at three time points (baseline; t0, 0 months, post-intervention; t1, 2 months, and after maintenance; t2, 3 months) focused on three core domains (1. relational well-being, 2. psychological well-being, and 3. dementia patient's lifestyle/activities). The primary outcome will be relational well-being, and data will be analyzed using linear mixed modelling.

The work of reform: a critical examination of health policy.

Anthropologists have critically examined a range of reforms from education and land to finance and health. Yet the predominant way of looking at reforms has been through a lens focused on neoliberal governance. For example, prior studies of health reforms focus on insurance, financing, and access to care. Yet, seeing reform in this way fails to attend to other types of cultural work at play when calling a policy or law a reform. In this paper, we draw on ethnographic research on health policy reforms in Israel and Bolivia to examine the concept of reform and the work it does within national movements. We argue that while the language of reform often signals change or novelty, reforms also carry forward historical continuities and reifications of the past. By delving into the past and its relationship with ongoing health reforms, we attend to how reforms can reinforce and maintain health inequities in some cases, while creating a national language for new possibilities in others. Reform, as we will discuss in this paper, is not only about political ideology, neoliberal governance, or on-the-ground policy implementation, but centrally it is about representations of aspirations, and about crafting relationships between past, present, and future.

Global Perspectives on Brief Cognitive Assessments for Dementia Diagnosis.

BACKGROUND: Timely diagnosis of dementia is a global healthcare priority, particularly in low to middle income countries where rapid increases in older adult populations are expected. OBJECTIVE: To investigate global perspectives on the role of brief cognitive assessments (BCAs) in dementia diagnosis, strengths and limitations of existing measures, and future directions and needs. METHODS: This is a qualitative study of 18 dementia experts from different areas of the world. Participants were selected using purposeful sampling based on the following criteria: 1) practicing in countries with projected growth of older adult population of over 100%by 2050; 2) expertise in dementia diagnosis and treatment; 3) involvement in clinical practice and training; and 4) recognition as a national dementia expert based on leadership positions within healthcare system, research, and/or policy work. Participants were individually interviewed in their language of choice over secure videoconference sessions. Interviews were analyzed by a multidisciplinary team using theme identification approach. RESULTS: Four domains with subthemes emerged illustrating participants' perspectives: 1) strengths of BCAs; 2) limitations of BCAs; 3) needs related to the use of BCAs; and 4) characteristics of an ideal BCA. While most experts agreed that BCAs were important and useful for dementia diagnosis, the themes emphasized the need for development and validation of novel measures that are sensitive, psychometrically sound, and culturally appropriate. CONCLUSION: BCAs are important for guiding diagnosis and care for dementia patients. Findings provide a roadmap for novel BCA development to assist in diagnostic decision making for clinicians serving a rapidly growing and diverse dementia population.