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. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re-engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.

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. Where possible, we benchmarked responses against pre-pandemic data. RESULTS: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to 'live well'. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. CONCLUSION: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

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. Secondly, we develop this theme to show how in our third site, an epigenetics "worm" laboratory, neurodegenerative changes are explored as located in specific gene-environment interactions over time. We speculate whether such an enactment brings us closer to a notion of "situated biology," to undercut possibilities of making genetic biomarkers of preclinical dementia hold.

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. Our aim is to highlight the extent to which the work of diagnosing dementia involves an intricate process of smoothing out seemingly insurmountable problems, such as the notoriously elusive connections between brain/mind and body/person. Furthermore, we show that a part of this process involves enrolling patients as minded, agentic subjects, the very subjects who are excluded from dementia science research in pursuit of biomarkers for the pre-clinical detection of dementia.

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. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being. We used structural equation modelling to derive latent variables for 7 domains reflecting caregivers' perceptions of their personal resources and experiences, and to examine the associations with caregivers' perceptions of their capability to "live well." RESULTS: The domain of psychological characteristics and psychological health was most strongly related to living well [2.53; 95% confidence interval (CI), 2.08-2.97], followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00) and relationship with the person with dementia (-0.22; 95% CI, -0.41 to -0.03) had smaller, significant associations. Social location (0.28; 95% CI, -0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, -0.15 to 0.28) were not significantly associated with living well. DISCUSSION: These findings demonstrate the importance of supporting caregivers' psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling them to maintain vital social capitals, assets and resources.

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. We used multivariate modeling to identify variables related to living well measures and structural equation modeling to derive latent variables for 5 life domains and to examine the associations of these domains with living well. RESULTS: All 5 domains were individually associated with living well. When modeled together, the psychological characteristics and psychological health domain was the only independent predictor of living well [effect size, 3.55; 95% confidence interval (CI): 2.93-4.17], and effect sizes were smaller for physical fitness and physical health (1.23, 95% CI: -0.10 to 2.58), social capitals, assets and resources (0.67; 95% CI: -0.04 to 1.38), managing everyday life with dementia (0.33; 95% CI: -0.06 to 0.71), and social location (0.08; 95% CI: -2.10 to 2.26). DISCUSSION: Psychological resources, and the social, environmental, and physical factors that underpin positive psychological states, are potentially important targets for interventions and initiatives that aim to improve the experience of living with dementia.

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. Furthermore, our ethnographic material illustrates the implications of this relationship: on the one hand, it provides opportunities for care work through 'tinkering' with diagnostic technologies and extending and opening out diagnostic categories, while on the other, it can form part of healthcare practitioners' disposal work, restricting opportunities for alternative meanings of dementia to endure.

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. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. DISCUSSION: IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

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. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

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. In addressing these specific concerns, this article contributes to the wider debate over the relationship between sociology and bioethics (medical ethics). At the heart of these debates lies more fundamental questions: how can we best understand and shape moral decision-making and ethics that guide behaviour in medical practice, and what should be the guiding ideas, concepts and methods to inform ethics in the clinic? Using the case of dementia diagnosis, this article illustrates the benefits of an ethnographic approach, not just for understanding this ethical problem but also for exploring if and how a more empirically informed ethics can help shape healthcare practices for the better.

Cultural representations of dementia.

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

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. The analysis from the Emergency Department case study suggests that demoralisation is an increasingly important lens through which to understand health-care institutions, where contemporary organisational cultures challenge the ethical quality of human interaction.

'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. The processes of categorising patients for priority of treatment and care provide staff with the opportunities to maintain control over what defines the ED as a service, as types of work and as particular kinds of patients. Patients and relatives are implicated in this categorical work in the course of interactions with staff as they provide reasons and justifications for their attendance. Their success in legitimising their claim to treatment depends upon self-presentation and identity work that (re)produces individual responsibility as a dominant moral order. The extent to which people attending the ED can successfully perform as legitimate is shown to contribute to their placement into positive or negative staff-constituted patient categories, thus shaping their access to the resources of emergency medicine and their experience of care.

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. The article bridges the gap between the sociological analysis of policy priorities, management strategy and the organisational cultures of the NHS, and the everyday interactions of care provision. In bringing together this ethnographic material with sociological debates on the regulation of healthcare, the article highlights the specific ways in which forms of governance shape how staff care for their patients challenging the possibility of providing dignified care for older people.