RESUMO
People living with cognitive impairments face new forms of disablement in the context of transport digitalisation, an issue recently catalysed by controversies regarding rail ticket office closures. Transport can dramatically impact the lives of people diagnosed with dementia, who often find their mobility suddenly and dramatically impaired. Unfortunately, sociological analysis of cognitive disability has traditionally been undermined by under-theorisation. One solution can be found in classic bioethical work on hypercognitivism-the veneration of cognitive acuity-and its disabling consequences. A hypercognitive approach can nurture an attentiveness to the specificities of digital disablement. Here, disability does not emerge from digitalisation inherently, but is instead intensified by the implementation of digitalisation in line with value commitments. A more robust sociology of cognitive disability could better represent the interests of people with cognitive impairments and resist the new forms of disability that current digitalisation risks spreading.
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Transitions into informal care roles are associated with various characteristics, for example gender and geographic proximity, but such associations are insufficient to explain role delegation, overlooking the interpersonal structure-agency nexuses that constitute role trajectories. This paper explores unequal role delegation within 7 families affected by dementia, presenting data from interviews with 7 people with dementia and 26 carers living in the community in the United Kingdom. Two key care roles are identified: the relatively un-involved role of peripheral actors and the lynchpin role of main carers who take on most of the care tasks. These roles emerge from negotiations around a range of extraneous factors that collectively comprise cumulative baggage, including historic conflicts and childcare commitments. The unequal distribution of care reflects widely noted demographic associations with role delegation, but is enacted and justified through the interpersonal negotiation of personalised meanings regarding individual circumstances and suitability. Though deeply personal when taken at face value, these meanings imbibe sociocultural norms and political economies of care to structurally position family members in relation to each other and signpost appropriate candidates for caring roles, even before such care is required.
Assuntos
Demência , Cuidadores , Demência/terapia , Família , Humanos , Assistência ao Paciente , Reino UnidoRESUMO
Debates regarding the status of age in social analysis are foundational to the sociology of aging, with scholars continually questioning the role of age as a social force. The contemporary politicization of age in British politics sheds useful light on this debate. During the past decade, age has emerged as a potent predictor of political preference in the United Kingdom, encompassing numerous intertwined political economic developments. At face value, the emergence of age as a key political variable substantiates the status of age in social analysis. However, I argue that it is articulations of age-stratified politics, as much as the associations themselves, that should be of principle concern for the sociology of aging, because such articulations are reformulating age, aging and intergenerational relations. The sociology of aging should, therefore, engage with the contemporary politicization of age as a new answer to foundational debates.
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Política , Sociologia , Envelhecimento , Humanos , Relação entre Gerações , Reino UnidoRESUMO
In this commentary, I consider what can go wrong in research when tensions arise between methodology and procedural ethics. I recount difficulties negotiating and implementing a participant recruitment strategy during my doctoral research project, which aimed to explore the experiences of people affected by dementia in the United Kingdom who were disengaged from services. To access this hard-to-reach population, I intended to adopt an informal recruitment strategy, snowball sampling from personal contacts and striking up conversations in public places. The procedural ethics committee were unhappy with this approach, deeming it potentially coercive. They suggested a more formal recruitment strategy enacted via emailing community organisations and churches. This approach entailed practical consequences that ultimately weakened the study sample, data and findings. This case raises questions about the negotiation of tensions between methodology and procedural ethics in gerontological research.
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Seleção de Pacientes/ética , Projetos de Pesquisa , Humanos , Pesquisa Qualitativa , Estudos de Amostragem , Reino UnidoRESUMO
This paper interrogates the legitimacy of formal ethical regulation regarding people with dementia under the Mental Capacity Act, 2005 in England and Wales. Under the Act, research among people diagnosed with dementia must be approved by Health Research Authority committees, irrespective of whether that research engages with health organisations or service users. As examples, I discuss two ethnographic dementia studies that do not engage with healthcare services, but which nonetheless require HRA approval. These instances raise questions regarding legitimacy and reciprocity in the governance of dementia. Through capacity legislation, the state exerts control over people with dementia, automatically delineating them as healthcare subjects because of their diagnoses. This diagnosis functions as a form of administrative medicalisation, rendering dementia a medical entity and those diagnosed with it the property of formal healthcare. However, many people with dementia in England and Wales do not receive related health or care services beyond diagnosis. This institutional imbalance of high governance and low support undermines the contractual citizenship of people with dementia, wherein state-citizen rights and responsibilities should be reciprocal. In response, I consider resistance to this system in ethnographic research. "Resistance" here is not necessarily deliberate, hostile, difficult or perceived, but rather encompasses micropolitical effects that are contrary to power or control, sometimes emerging from systems themselves rather than individual resistive actors. Resistance can be unintentional, through mundane failures to satisfy specific aspects of governance bureaucracies. It can also be deliberate, through refusals to comply with restrictions that seem cumbersome, inapplicable or unethical, potentially raising questions of malpractice and misconduct. I suggest that resistance is made more probable due to the expansion of governance bureaucracies. On the one hand, the potential for both unintentional and intentional transgression increases, while on the other hand, the capacity for those transgressions to be discovered and rectified decreases, because the maintenance of control over such a system requires vast resources. Behind this ethico-bureaucratic tumult, people with dementia themselves are largely invisible. People with dementia often have no interaction with committees that determine their research participation. This further renders ethical governance a particularly disenfranchising facet of the dementia research economy. The state stipulates that people with dementia must be treated differently because of their diagnoses, without consulting those people. In response, resistance to unethical governance could be intuitively deemed ethical per se, but I suggest that such a simplistic binary is somewhat misleading.
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Antropologia Cultural , Demência , Humanos , Inglaterra , Instalações de SaúdeRESUMO
Following recent regulatory approvals for anti-Alzheimer's monoclonal antibodies, this paper considers the contemporary role of cognitivism in defining the ontological commitments of dementia research, as well as movements away from cognitivism under the umbrella of 4E cognitive science. 4E cognitive theories, extending cognition into bodies, their environs, and active relations between the two, share potentially fruitful affinities with new materialisms which focus on the co-constitution of matter in intra-action. These semi-overlapping conceptual positions furnish some opportunity for an ontological alternative to longstanding cognitivist commitments, particularly to the isolated brain as a material catalyst for commercial interventions. After outlining mainstream cognitivism and its shortcomings, I explore 4E and new materialism as possibly transformative conceptual schemas for dementia research, a field for which cognitivist imaginings of cognitive decline in later life have profound and often regrettable ramifications. To realise this new materialist dementia, I sketch out a cognitive ontology based on Barad's agential realism. This facilitates a reassessment of the biggest conundrum in dementia research - the lack of neat correlation between (apparently material) neuropathology and (apparently immaterial) cognitive impairment - alongside the continued failure of efforts to develop effective interventions. It also gives social researchers working on cognitive decline in later life an opportunity to reappraise the nature of social science as a response to such phenomena. If cognition and cognitive ageing are reimagined as an emergent characteristic of intra-acting matter, then new materialist social science might be at least as conducive to salutogenic interventions as the neuropsychiatric technoscience that dominates the contemporary dementia research economy despite continual failures. I argue that a new materialist cognitive ontology could help us think beyond an ageing cognitivism and, by extension, beyond the Alzheimer conundrum.
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Envelhecimento , Demência , Humanos , Cognição , EncéfaloRESUMO
Over recent decades, the arts have become a popular response to dementia. Amidst wider concerns with accessibility, widening participation and audience diversity, coupled with greater attention to creativity across dementia studies, many arts organisations are now offering dementia friendly initiatives. While dementia friendliness has been well-established for almost a decade, the meaning of friendliness remains vague. This paper reports results from a study of how stakeholders navigate this nebulousness when developing their own dementia friendly cultural events. To assess this, we interviewed stakeholders working for arts organisations in the northwest of England. We found that participants built up local informal networks of knowledge exchange, sharing experiences between stakeholders. The dementia friendliness that characterises this network centres on the crafting of vibes that enable people with dementia to 'unhide' themselves. Through this accommodating approach, dementia friendliness converges with stakeholder interests, becoming something of an art form in its own right, typified by active embodied experience, flexible and creative self-expression, and being in-the-moment.
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Demência , Humanos , Inglaterra , CriatividadeRESUMO
Recent political processes have rendered people with dementia an increasingly surveilled population. Surveillance is a contentious issue within dementia research, spanning technological monitoring, biomarker research and epidemiological data gathering. This paper explores surveillance in the relationships of people affected by dementia, how older relatives both with and without diagnoses are surveilled in everyday interactions, and the importance of expectations in guiding surveillance. This paper presents data from 41 in-depth interviews with people affected by dementia living in the community in the United Kingdom. Agedness was a key contributor to expectations that a person may have dementia, based on previous experiences, media accounts and wider awareness. Expectations provoked surveillance in interactions, with participants looking for signs of dementia when interacting with older relatives. Older people also enacted self-surveillance, monitoring their own behaviour. Various actions could be attributed to dementia because interpretation is malleable, partly vindicating expectations while leaving some uncertainties. Expectant surveillance transformed people's experiences because they organised their own actions, and interpreted those of others, in line with pre-existing meanings. The ability to interpret behaviours to fit expectations can bring coherence to uncertainties of ageing, cognition and dementia, but risks ascribing dementia to many older people who straddle those uncertainties.
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Demência , Idoso , Envelhecimento , Cognição , Demência/epidemiologia , Humanos , Motivação , TecnologiaRESUMO
The second King's College London Symposium on Ageing and Long-term Care in China was convened from 4 to 5th July 2019 at King's College London in London. The aim of the Symposium was to have a better understanding of health and social challenges for aging and long-term care in China. This symposium draws research insights from a wide range of disciplines, including economics, public policy, demography, gerontology, public health and sociology. A total of 20 participants from eight countries, seek to identify the key issues and research priorities in the area of aging and long-term care in China. The results published here are a synthesis of the top four research areas that represent the perspectives from some of the leading researchers in the field.
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Geriatria , Assistência de Longa Duração , Envelhecimento , China , HumanosRESUMO
This paper charts the emergence of under-remarked affinities between contemporary anti-aging technoscience and some social scientific work on biological aging. Both have recently sought to develop increasingly sophisticated operationalizations of age, aging and agedness as biological phenomena, in response to traditional notions of normal and chronological aging. Rather than being an interesting coincidence, these affinities indicate the influence of a biopolitics of successful aging on government, industry and social science. This biopolitics construes aging as a personal project that is mastered through specific forms of entrepreneurial individual action, especially consumption practices. Social scientists must remain alert to this biopolitics and its influence on their own work, because the individualization of cumulative inequalities provides intellectual and moral justifications for anti-aging interventions that exploit those inequalities.
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Envelhecimento , HumanosRESUMO
OBJECTIVES: This paper explores the emergence of dementia within interpersonal interactions as a matter of deviance and visibility. The sociology of deviance suggests that we rely on assumptions of normal behaviour to help us develop interpretations of other people when interacting with them. When a person acts within expectation, we deem them normal. When a person transgresses expectation, we deem them deviant. In this way, dementia is revealed. METHODS: Semi-structured interviews were conducted with seven community-dwelling people with dementia and 26 carers living in the East Midlands, United Kingdom. Carers were selected for inclusion by participating people with dementia. Interview data was analysed using thematic analysis informed by symbolic interactionism. RESULTS: Four ways in which audiences may interpret a person as having a dementia are outlined: speech, temporality, conflict and novelty. These four mechanisms of visibility represent key moments in which dementia emerges in interaction. DISCUSSION: Examining dementia in terms of deviance and visibility positions dementia within social processes. This externalisation of dementia, relocating it within a combination of action, situation and audience, may suggest new possibilities for mediating its negative repercussions.
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Cuidadores/psicologia , Demência/psicologia , Relações Interpessoais , Normas Sociais , Idoso , Inglaterra , Feminino , Serviços de Saúde para Idosos , Humanos , Entrevistas como Assunto , MasculinoRESUMO
This paper analyses the use of biomarkers in contemporary psychiatric research, arguing that this research has problems of circularity. Focusing on the specific cases of Alzheimer's disease and stress research, we show how these fields have a circular usage of two biomarkers - amyloid-beta and cortisol respectively. We argue that the resulting circularity can be understood as a case of ontological gestalt switching, wherein one object (e.g. Alzheimer's disease) is switched with an object that differs in some way (e.g. protein aggregation). Such circularity can impede research because it entails stripping away important specificities, whereby characteristics that are not directly shared between two switched objects are inevitably forfeited. The losing of specificities can exacerbate discrepancies between illness and disease and lead to the homogenisation of diverse populations and disease subtypes, as has been shown to hamper Alzheimer's research. In response, we suggest that the use of biomarkers in psychiatric research should be subject to guidelines, under which such practices must be articulated in a simplified vocabulary that encourages reflexivity regarding potential instances of circularity.