Dilemmas of intervention: From person-centred to alienation-centred dementia care.

Discussions regarding personhood and dementia care are often based on practices of recognition; on notions of being-or not being- 'one of us'. This article provides a short overview of personhood as articulated in dementia care, especially in the assemblage of practices known as 'person-centred care' (PCC), and in post-human approaches that developed following the critique of PCC. This article posits an alternative framework, based on a rereading of the concept of alienation, that we want to call 'alienation-centred care'. It considers the extent to which dynamic prosthetic networks can be adapted to the lives of people with dementia, rather than only examining the individual's reactivity to dementia interventions that define traditional approaches. It further urges us to understand the multiple origins of alienating states. Conclusions explore how this framework might address some of the limitations identified in both humanist and post-human approaches to personhood and dementia.

Emerging Technologies for Preventing the 'New' Dementia: Ambiguous Optimism in the Canadian Context.

Experts' views on the use of mostly digital technologies for dementia prevention are characterized by a simultaneity of "gerontechnological optimism" and skeptical hesitancy. Despite the hope for progress in dementia prevention through preventive technologies, experts also point to the complexity of prevention, the importance of environmental factors and public health policies, and the danger of an excessive focus on individual interventions. Without questioning the positive impact such technologies can have on many people, we claim that the experts' ambiguity reveals a deeper concern, a kind of "cruel optimism" that is based on a fantasy of "supported autonomy".

Rethinking dementia as a queer way of life and as 'crip possibility': A critique of the concept of person in person-centredness.

The concept of person-centeredness has become in many instances the standard of health care that humanises services and ensures that the patient/client is at the centre of care delivery. Rejecting a purely biomedical explanation of dementia that led to a loss of self, personhood in dementia could be maintained through social interaction and communication. In this article, we use the insights of queer theory to contribute to our current understanding of the care of those with dementia. We critically discuss the concepts of person and personhood that have become the cornerstone values of person-centred care for persons with dementia (PWD). Some critics, using queer theory as a theoretical approach, contend that person-centred care often (unwittingly) reproduces heteronormative roles in trying to sustain life histories. In doing so, they argue, regendering of PWD is sometimes enforced by care providers who try to safeguard this biographical continuity. Cultural theorist Linn Sandberg also mentions that other axes of domination such as race and class are not conceptualised in person-centeredness approaches, and neither are power asymmetries. Thus, in our article, we revisit the concept of person-centred care as a first step in proposing another way to think about 'beings with dementia' (to avoid the term person). Believing that queer theorists have fallen short in questioning the idea of person or personhood as such, we will build on and broaden Sandberg's critique by demonstrating that queer and crip theory can be understood as a fundamental critique of the (Western) subject and processes of subjectivation. We argue that dementia can be conceptualised as a radical break not only with gendered roles and embodiments, but with many of the norms that make us recognisable subjects. Conceptualising dementia in this way turns it into what Sandberg called an 'emancipatory space' and not merely a pathology.

"You're Part of Us and We're Happy to Have You Here": Practices of Social Inclusion for Persons with Dementia.

Objectives: Practices of social inclusion are important for maintaining the relationships of persons with dementia and are associated with positive clinical outcomes. The objective of this study was to explore the in-action practices of social inclusion in the activity center of a community-based organization.Methods: This study applies an ethnographic approach - including participant observation, informal and semi-structured interviews - with persons with dementia (n = 31) and organization staff members (n = 9) to explore the in-action practices of social inclusion.Results: Seven in-action practices of inclusion were identified: ensuring time for individual relationships, building schedules centered around flexibility, empowering decision-making, normalizing dementia-related behaviors, involving family members, soliciting and integrating persons with dementia's feedback, and supporting persons with dementia to practice social inclusion.Conclusions: Care providers of individuals with dementia can effectively facilitate active connections with them by continually soliciting and incorporating their feedback, and by supporting persons with dementia to practice inclusion and care for others.Clinical Implications: Community-based organizations can be effective at supporting the active connection of individuals with dementia with others and should be promoted for individuals with mild to moderate dementia.

Self-Care Experiences of Adults with Chronic Disease in Indonesia: An Integrative Review.

We conducted a literature review to document what is known regarding the self-care experiences and various influencing factors among adults living with chronic disease in Indonesia, from the perspective of those living with the illness. We searched CINAHL and Google Scholar to identify peer-reviewed research focused on men and/or women living with a chronic disease (the most prevalent) in urban or rural settings in Indonesia. Using a "Self-Care of Chronic Illness" framework as a guide, information on self-care experiences and how various factors influence these experiences, was extracted and synthesized. Nine studies were included (3 quantitative; 6 qualitative). Self-care involves maintaining well-being through different strategies (e.g., foot hygiene, seeking information/care, praying, diet, resting, and simplifying life), following prescribed treatments, and using traditional remedies. Religion sometimes serves as a means for taking care of one's health (e.g., prayer), or as a source of motivation to self-care, while in other instances, it results in a fatalistic attitude. Which treatments (conventional versus traditional) are sought, it is affected by an understanding of the disease and treatments, which is shaped by beliefs, values, emotions, health literacy, and SES. The literature shows that family, especially women, has a key role in providing support. Community organizations also play an important supportive role, particularly for patients in rural areas. Significant barriers to healthcare include costs and care not being well-adapted to the psychosocial needs and contexts of patients. The literature highlights a disconnection between the self-care experiences and how healthcare and support are delivered. To better support self-care, healthcare professionals should use a personalized approach; however, more research is needed to gain a better understanding of what patients want and expect regarding how religion, beliefs, life circumstances, and the use of alternative therapies should be addressed within the patient-professional dynamic.

A New Web-Based Big Data Analytics for Dynamic Public Opinion Mapping in Digital Networks on Contested Biotechnology Fields.

The expression "public opinion" has long been part of common parlance. However, its value as a scientific measure has been the topic of abundant academic debates over the past several decades. Such debates have produced more variety and contestations rather than consensus on the very definition of public opinion, let alone on how to measure it. This study reports on the usefulness of web-based big data digital network analytics in deciphering the distributed meanings and sense making related to controversial biotechnology applications. Using stem cell therapies as a case study, we argue that such digital network analysis can complement the traditional opinion polls while avoiding the sampling bias that is typical of opinion polls. Although the polls cannot account for the opinion dynamics, combining them with web-based big data analysis can shed light on three dimensions of public opinion essential for sense making: counts or volume of opinion data, content, and movement of opinions. This approach is particularly promising in the case of ongoing scientific controversies that increasingly overflow into the public sphere morphing into public political debates. In particular, our study focuses as a case study on public controversies over the clinical provision of stem cell therapies. Using web entities specifically addressing stem cell issues, including their dynamic aggregation, the internal architecture of the web corpus we report in this study brings the third dimension of public opinion (movement) into sharper focus. Notably, the corpus of stem cell networks through web connectivity presents hot spots of distributed meaning. Large-scale surveys conducted on these issues, such as the Eurobarometer of Biotechnology, reveal that European citizens only accept research on stem cells if they are highly regulated, while the stem cell digital network analysis presented in this study suggests that distributed meaning is promise centeredness. Although major scientific journals and companies tend to structure public opinion networks, our finding of promise centeredness as a key ingredient of distributed meaning and sense making is consistent with therapeutic tourism that remains as an important facet of the stem cell community despite the lack of material standards. This new approach to digital network analysis has crosscutting corollaries for rethinking the notion of public opinion, be it in electoral preferences or as we discuss in this study, for new ways to measure, monitor, and democratically govern emerging technologies.

Geriatrics and humanism: Dementia and fallacies of care.

Based on fieldwork in a specialized geriatric outpatient clinic in Brazil, this article shows how a humanistic discourse that 'means well' can do good, but can also produce a regime of care that ultimately results in care that is contrary to stated values. These values - such as holistic care, multidisciplinarity, and empathy - that have been at the heart of geriatrics since its more official founding in the 1940s and 1950s, cannot be conceived as only local. The Brazilian data mirrors international geriatric values and norms, which, however, are being applied here in a specific context, in a country perceived as 'young' and with limited resources for elder care. Fallacies of care in this context result preliminary from a translation of more structural factors as individualized (self-)care and from the abstraction and generalization of aging individuals as 'older people'.

Operating Room Culture and Interprofessional Relations: Impact on Nurse's Retention.

The purpose of this article is to describe interprofessional relations in order to better understand their impact on nurse retention, while considering the operating room culture and its specific context. A focused ethnography was performed between September and October 2017 at a university hospital in an urban center in the province of Quebec, Canada. This was a secondary analysis of 11 nurses' semistructured one-on-one interviews. Additional data were collected through 6 days of observations, informal conversations, field notes, and a journal. A thematic analysis followed. Interprofessional relations and the need for recognition are important for nurse retention. In addition, a nurse's personality appears to be an important aspect in the complex and specific context of the operating room. Nurse retention in the operating room is multifactoral, and like the need for recognition, interprofessional relations are important issues. Interventions to improve working relationships, recognition of nurses, and consideration of a nurse's personality during hiring appear to be promising avenues for improving retention in the operating room.

Situated Prevention: Framing the "New Dementia".

This article is about the recent and profound changes in the conceptualization of dementia, especially the turn towards prevention. The main argument is that more attention needs to be paid to "situated prevention" - the framing of internationally circulating data on the "new dementia" in different contexts. After introducing some of the more problematic issues related to the "new dementia," a first comparison of major preventive clinical trials in Europe and in North America will be provided. The major insight stemming from situating the global message of preventing dementia is recognition of the responsibility researchers and policy makers bear with respect to the implicit and potential moral narratives in emerging scientific landscapes.

Positive deviance and hand hygiene of nurses in a Quebec hospital: What can we learn from the best?

BACKGROUND: Although it is well known that hand hygiene is the most effective measure to prevent health care-associated infections, hand hygiene adherence is low in Quebec, as it is elsewhere. For this study, an innovative framework was used to explore the clinical practice of nurses regarding hand hygiene and the factors that influence it: positive deviance, or the idea that there are people who find better solutions to problems than their peers. This study investigated positive deviance at the level of the care team to shed light on group dynamics. METHODS: We conducted focused ethnographies on 2 care units-a medical-surgery unit and a palliative care unit-at a Montreal university hospital. Data collection consisted mainly of systematic observations and individual interviews with nurses. RESULTS: The results show that positive deviance related to hand hygiene is instigated by social cohesion within a care team, created, in this study, by the mobilizing leadership of the head nurse in the medical-surgery unit and the prevailing humanist philosophy in the palliative care unit. CONCLUSIONS: In health care, it can be useful to apply the positive deviance approach to care teams instead of individuals to better understand the ideologic and structural differences linked to better hand hygiene performance by the nurses.

[Reflections on ethnography in the emergency department]. / Reflexões sobre um fazer etnográfico no pronto-socorro.

: Ethnography is the principal research method in Anthropology. With a broad scope, it allows using different data collection techniques and incorporates elements observed and obtained in the field into the analysis. In Public Health, it can contribute to understanding the health/disease process and health professionals' and patients' values and attitudes in different healthcare settings. The aim of this article is to present and discuss the ethnographic method based on an empirical study of physicians' hospital work in the face of the limits between life and death. Data collection involved nine months of participant observation and interviews with 43 physicians (25 men and 18 women), 28 to 69 years of age, treating critical patients in different departments of a metropolitan emergency hospital. The various social and cultural aspects experienced by the researcher and obtained from the interlocutors in the field provide a dense description of this hospital ethnography.

A etnografia é o método de investigação por excelência da Antropologia. De ampla abrangência, ela permite o uso de várias técnicas na coleta de dados e incorpora na análise elementos observados e obtidos no campo. Na Saúde Coletiva, pode contribuir na compreensão do processo saúde/doença, dos valores e das atitudes de profissionais e de pacientes em diferentes contextos de cuidado. O objetivo deste artigo é apresentar e discutir o método etnográfico com base em uma pesquisa empírica sobre a atuação médica hospitalar diante dos limites da vida e da morte. A coleta de dados deu-se ao longo de nove meses de observação participante e de entrevistas junto a 43 médicos, 25 homens e 18 mulheres, de 28 a 69 anos, que assistem pacientes com risco de morte, em setores distintos de um hospital metropolitano de pronto-atendimento. Na fase de escrita, os diversos aspectos sociais e culturais - experienciados pelo pesquisador e obtidos junto aos interlocutores no campo - amalgamam uma descrição densa desta etnografia hospitalar.

La etnografía es el método de investigación por excelencia de la Antropología. De amplio espectro, permite el uso de varias técnicas en la recogida de datos, e incorpora en el análisis elementos observados y obtenidos en trabajos de campo. En la Salud Colectiva puede contribuir a la comprensión del proceso salud/enfermedad, de los valores y actitudes de profesionales y de pacientes en diferentes contextos de cuidado. El objetivo de este artículo es presentar y discutir el método etnográfico, en base a una investigación empírica sobre la actuación médica hospitalaria ante los límites de la vida y la muerte. La recogida de datos se produjo a lo largo de nueve meses de observación participante y de entrevistas junto a 43 médicos, 25 hombres y 18 mujeres, de 28 a 69 años, que asisten a pacientes con riesgo de muerte, en sectores distintos de un hospital metropolitano de urgencias. En la fase de escritura, los diversos aspectos sociales y culturales -vividos por el investigador- y, obtenidos junto a los interlocutores en el trabajo de campo, condensan una descripción densa de esta etnografía hospitalaria.

Pesquisa com células-tronco no Brasil: a produção de um novo campo científico / Stem cell research in Brazil: the production of a new field of science

Resumo O artigo apresenta um panorama das pesquisas com células-tronco no Brasil, a partir de levantamento bibliográfico de artigos de pesquisadores brasileiros, publicados no início do século XXI. A análise das produções evidenciou três eixos centrais na abordagem da temática: o âmbito de fomentos destinados a investigações brasileiras com células-tronco; os estudos pré-clínicos e clínicos realizados no país; e análises socioantropológicas com foco em questões éticas e legais. O artigo aponta aspectos controversos na construção desse campo científico, especialmente vinculados à mídia, como propagadora de valores e determinadas representações sociais, com destaque para novas modalidades de esperança. Nesse cenário de incertezas, encontram-se enfermos e familiares, mobilizados pelas promessas da “medicina do futuro”.

Abstract Based on a review of the literature published in the early twenty-first century by Brazilian researchers, the article offers an overview of stem cell research in Brazil. Three central topics were detected in these papers: (1) the funding of stem cell research in Brazil; (2) preclinical and clinical trials in Brazil; and (3) social anthropological analysis focused on ethical and legal matters. Our review identifies controversial questions in the construction of this scientific field, especially issues involving the media as a disseminator of values and of certain social representations, where new kinds of hope figure large. Within this climate of uncertainty, we find patients and their families energized by the promises of the “medicine of the future.”

Stem cell research in Brazil: the production of a new field of science. / Pesquisa com células-tronco no Brasil: a produção de um novo campo científico.

Based on a review of the literature published in the early twenty-first century by Brazilian researchers, the article offers an overview of stem cell research in Brazil. Three central topics were detected in these papers: (1) the funding of stem cell research in Brazil; (2) preclinical and clinical trials in Brazil; and (3) social anthropological analysis focused on ethical and legal matters. Our review identifies controversial questions in the construction of this scientific field, especially issues involving the media as a disseminator of values and of certain social representations, where new kinds of hope figure large. Within this climate of uncertainty, we find patients and their families energized by the promises of the "medicine of the future."

Reflexões sobre um fazer etnográfico no pronto-socorro / Reflections on ethnography in the emergency department / Reflexiones sobre la labor etnográfica en un servicio de urgencias

Resumo: A etnografia é o método de investigação por excelência da Antropologia. De ampla abrangência, ela permite o uso de várias técnicas na coleta de dados e incorpora na análise elementos observados e obtidos no campo. Na Saúde Coletiva, pode contribuir na compreensão do processo saúde/doença, dos valores e das atitudes de profissionais e de pacientes em diferentes contextos de cuidado. O objetivo deste artigo é apresentar e discutir o método etnográfico com base em uma pesquisa empírica sobre a atuação médica hospitalar diante dos limites da vida e da morte. A coleta de dados deu-se ao longo de nove meses de observação participante e de entrevistas junto a 43 médicos, 25 homens e 18 mulheres, de 28 a 69 anos, que assistem pacientes com risco de morte, em setores distintos de um hospital metropolitano de pronto-atendimento. Na fase de escrita, os diversos aspectos sociais e culturais - experienciados pelo pesquisador e obtidos junto aos interlocutores no campo - amalgamam uma descrição densa desta etnografia hospitalar.

Abstract: Ethnography is the principal research method in Anthropology. With a broad scope, it allows using different data collection techniques and incorporates elements observed and obtained in the field into the analysis. In Public Health, it can contribute to understanding the health/disease process and health professionals' and patients' values and attitudes in different healthcare settings. The aim of this article is to present and discuss the ethnographic method based on an empirical study of physicians' hospital work in the face of the limits between life and death. Data collection involved nine months of participant observation and interviews with 43 physicians (25 men and 18 women), 28 to 69 years of age, treating critical patients in different departments of a metropolitan emergency hospital. The various social and cultural aspects experienced by the researcher and obtained from the interlocutors in the field provide a dense description of this hospital ethnography.

Resumen: La etnografía es el método de investigación por excelencia de la Antropología. De amplio espectro, permite el uso de varias técnicas en la recogida de datos, e incorpora en el análisis elementos observados y obtenidos en trabajos de campo. En la Salud Colectiva puede contribuir a la comprensión del proceso salud/enfermedad, de los valores y actitudes de profesionales y de pacientes en diferentes contextos de cuidado. El objetivo de este artículo es presentar y discutir el método etnográfico, en base a una investigación empírica sobre la actuación médica hospitalaria ante los límites de la vida y la muerte. La recogida de datos se produjo a lo largo de nueve meses de observación participante y de entrevistas junto a 43 médicos, 25 hombres y 18 mujeres, de 28 a 69 años, que asisten a pacientes con riesgo de muerte, en sectores distintos de un hospital metropolitano de urgencias. En la fase de escritura, los diversos aspectos sociales y culturales -vividos por el investigador- y, obtenidos junto a los interlocutores en el trabajo de campo, condensan una descripción densa de esta etnografía hospitalaria.

Liminal homes: Older people, loss of capacities, and the present future of living spaces.

There are many studies that have examined the meaning of home for older people. In this article, our aim is to add the concept of 'liminal homes' to the existing discussion: While the concept of liminal homes can be applied to a number of 'interim spaces', we focus in our study, on those older people who have to consider, or are concretely confronted with, the need to move into another living space, because of declining health. Based on interviews and photo-elicitation with 26 older lower-income seniors living in Montreal, Québec, this article demonstrates the complexity of liminality and analyzes the dynamics of this process, composed of a web of interrelated and often dichotomous elements. These include the idealized home in contrast to (sometimes imagined) institutions; declining health as opposed to the ideals of active aging and third age; and the widely promoted concept of aging in place versus the reality of being 'stuck in place' due to limited resources. The strategies employed by these older Quebeckers to remain in this state and resist a move to another living space, are the often arduous construction of a 'patchwork of care'.

The earlier the better: Alzheimer's prevention, early detection, and the quest for pharmacological interventions.

Although the risk factors, biomarkers, and medications for Alzheimer's disease appear to be almost identical in 1993 and 2013, profound changes can de detected throughout this time period. This article maps these recent changes in the conceptualization of Alzheimer's disease, especially the emerging trend toward prevention. While some preventive practices (e.g., brain training) and the search for early signs and biomarkers (such as APOEε4) have existed for a long time, the recent broadening of scope to include cardiovascular risk factors and their prevention, paired with pre-symptomatic detection of disease-specific biomarkers, has considerably impacted the conventional understanding of this syndrome and the possibilities for pharmacological and non-pharmacological interventions. The rationale for emphasizing multiple logics when explaining these changes is to avoid simplified argumentative pathways that exist among some scientists.

The multiple anxieties of getting older: tranquilizers and the ambivalence of effect.

Most studies on benzodiazepines emphasize overconsumption and warn of addiction, especially by older adults. This article is about the avoidance of benzodiazepine medications by 'aging' women living in a Brazilian village. This case study helps to support our central concern: to call attention to the ambiguities that exist in discussing these medications, and to stress the importance of a multilayered understanding of effect. We argue that benzodiazepines, like other psychopharmaka, induce bodily sensations that, at least in part, correspond to and are shaped by the situated self-image of individuals in distress.

The meaning of "aging in place" to older people.

PURPOSE: This study illuminates the concept of "aging in place" in terms of functional, symbolic, and emotional attachments and meanings of homes, neighbourhoods, and communities. It investigates how older people understand the meaning of "aging in place," a term widely used in aging policy and research but underexplored with older people themselves. DESIGN AND METHODS: Older people (n = 121), ranging in age from 56 to 92 years, participated in focus groups and interviews in 2 case study communities of similar size in Aotearoa New Zealand, both with high ratings on deprivation indices. The question, "What is the ideal place to grow older?" was explored, including reflections on aging in place. Thematic and narrative analyses on the meaning of aging in place are presented in this paper. RESULTS: Older people want choices about where and how they age in place. "Aging in place" was seen as an advantage in terms of a sense of attachment or connection and feelings of security and familiarity in relation to both homes and communities. Aging in place related to a sense of identity both through independence and autonomy and through caring relationships and roles in the places people live. IMPLICATIONS: Aging in place operates in multiple interacting ways, which need to be taken into account in both policy and research. The meanings of aging in place for older people have pragmatic implications beyond internal "feel good" aspects and operate interactively far beyond the "home" or housing.