Emotional Labor in Dementia Research.

The concept of emotional labor refers to the regulation and management of emotions within the workplace. This labor may involve a dissonance between the emotions that are internally felt and the emotions that can be externally expressed. The concept of emotional labor can be applied to the emotional management that occurs during research often when directly interacting with research participants.

Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants.

This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID-19 vaccination roll-out. We conducted 12 semi-structured interviews with people with dementia aged 50-88 years, living alone or with a partner, and 10 carers aged 61-78 years, all living with the person with dementia. Three of the interviews were with dyads.

Impact of COVID-19 on 'Living Well' with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort.

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.

Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.

Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort.

Biomarkers and brains: situating dementia in the laboratory and in the memory clinic.

This paper provides a comparison of how genetic biomarkers are used (or not) in three contexts: clinic-based diagnostic work with people; lab-based research on mice and their marbles; and lab-based research on thrashing nematodes. For all the worldwide drive to find biomarkers that can be used in the detection of early, presymptomatic dementia, there is little research on how or when the association between biomarkers and a definitive disease are being made to "hold." First, we show the disjuncture between the animal modeling that underpins laboratory attempts to stabilize genetic biomarkers and the paradigms that inform clinical diagnosis.

Somaticization, the making and unmaking of minded persons and the fabrication of dementia.

This article examines the strategies by which the different and variable signs of failing mental powers become known sufficiently for 'dementia' to be made into a stable bio-clinical entity, that can be tested, diagnosed and perhaps one day even treated. Drawing on data from ethnographic observations in memory clinics, together with interviews with associated scientists and clinicians, we document the challenges that clinicians face across the clinical and research domain in making dementia a stable object of their investigation. We illustrate how the pressure for early diagnoses of dementia creates tensions between the scientific representations of early dementia and its diagnosis in the clinic.

A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

Introduction: We aimed to better understand what predicts the capability to "live well" with dementia by identifying the relative contribution of life domains associated with the subjective experience of living well.

Methods: We analyzed data from 1547 individuals with mild-to-moderate dementia in the IDEAL cohort. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being.

A Comprehensive Model of Factors Associated With Capability to "Live Well" for Family Caregivers of People Living With Mild-to-Moderate Dementia: Findings From the IDEAL Study.

Introduction: Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues.

Methods: We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study.

Fear and anxiety: Affects, emotions and care practices in the memory clinic.

This paper contributes to the growing recognition in Science and Technology Studies and medical sociology of the significant role of affect in scientific and clinical work. We show how feelings of fear and anxiety associated with dementia not only shape people's experiences and responses to a diagnosis, but also shape the practices and processes through which assessments and diagnoses are accomplished. What emerges from our research, and provides a distinct contribution to this growing field of study, is the relationship between the uncertainties that pervade the diagnosis of memory problems and the various strategies and practices employed to care for, divert, restrict or manage affective relations.

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

Background: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs.

Methods: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain.

Dualities of dementia illness narratives and their role in a narrative economy.

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition.

Cultural representations of dementia.

In a Perspective, Alexandra Hillman and Joanna Latimer discuss cultural representations of dementia in the media, film, and literature.

Diagnosing dementia: Ethnography, interactional ethics and everyday moral reasoning.

This article highlights the contribution of ethnography and qualitative sociology to the ethical challenges that frame the diagnosis of dementia. To illustrate this contribution, the paper draws on an ethnographic study of UK memory clinics carried out between 2012 and 2014. The ethnographic data, set alongside other studies and sociological theory, contest the promotion of a traditional view of autonomy; the limiting of the point of ethical interest to a distinct moment of diagnosis disclosure; and the failure to recognise risk and uncertainty in the building of clinical 'facts' and their communication.

Institutions of care, moral proximity and demoralisation: The case of the emergency department.

This article draws on concepts of morality and demoralisation to understand the problematic nature of relationships between staff and patients in public health services. The article uses data from a case study of a UK hospital Emergency Department to show how staff are tasked with the responsibility of treating and caring for patients, while at the same time their actions are shaped by the institutional concerns of accountability and resource management. The data extracts illustrate how such competing agendas create a tension for staff to manage and suggests that, as a consequence of this tension, staff participate in processes of 'effacement' that limit the presence of patients and families as a moral demand.

'Why must I wait?' The performance of legitimacy in a hospital emergency department.

This article examines the processes of negotiation that occur between patients and medical staff over accessing emergency medical resources. The field extracts are drawn from an ethnographic study of a UK emergency department (ED) in a large, inner city teaching hospital. The article focuses on the triage system for patient prioritisation as the first point of access to the ED.

Risk, governance and the experience of care.

Drawing on perspectives from the governmentality literature and the sociology of risk, this article explores the strategies, tools and mechanisms for managing risk in acute hospital trusts in the United Kingdom. The article uses qualitative material from an ethnographic study of four acute hospital trusts undertaken between 2008 and 2010 focusing on the provision of dignified care for older people. Extracts from ethnographic material show how the organisational mechanisms that seek to manage risk shape the ways in which staff interact with and care for patients.