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A crucial reckoning was initiated when the COVID-19 pandemic began to expose and intensify long-standing racial/ethnic health inequities, all while various sectors of society pursued racial justice reform. As a result, there has been a contextual shift towards broader recognition of systemic racism, and not race, as the shared foundational driver of both societal maladies. This confluence of issues is of particular relevance to Black populations disproportionately affected by the pandemic and racial injustice. In response, institutions have initiated diversity, equity, and inclusion (DEI) efforts as a way forward. This article considers how the dual pandemic climate of COVID-19-related health inequities and the racial justice movement could exacerbate the “time and effort tax” on Black faculty to engage in DEI efforts in academia and biomedicine. We discuss the impact of this “tax” on career advancement and well-being, and introduce an operational framework for considering the interconnected influence of systemic racism, the dual pandemics, and DEI work on the experience of Black faculty. If not meaningfully addressed, the “time and effort tax” could contribute to Black and other underrepresented minority faculty leaving academia and biomedicine – consequently, the very diversity, equity, and inclusion work meant to increase representation could decrease it.
This chapter draws on qualitative research using participatory methods to explore the experience of people with dementia who live alone. Drawing on data gathered in Sweden and the UK, the chapter highlights the distinct challenges of living alone with dementia and explores the different ways that people remain connected to neighbourhood places. We argue that the invisibility of such experiences to dementia policy and strategies (which typically assume the presence of a cohabiting carer or household member to provide support) needs to be addressed if dementia-friendly initiatives are to be truly inclusive.
Demographic projections show that the number of people living in single households will continue to increase steadily in many western and northern European countries and that older women are the fastest-growing section of the single householder population (Sundström et al, 2016; United Nations, 2017). The ageing population living alone in Europe also includes an increasing proportion of people with dementia (Prescop et al, 1999; Gaymu and Springer, 2010; Prince et al, 2015). In Canada, France, Germany, the UK and Sweden, between one third and one half of the population of people with dementia residing in a neighbourhood context live in single households (Ebly et al, 1999; Nourhashemi et al, 2005; Alzheimer's Society, 2013; Eichler et al, 2016; Odzakovic et al, 2019). Despite this increase in single householders with dementia, there is currently limited awareness of the particular challenges associated with living alone with dementia, even within emerging discourses and practices associated with dementia-friendly communities (Alzheimer's Society, 2013; Age UK, 2018; Odzakovic et al, 2018). As such, there is a danger that the creation of ‘dementia-friendly’ communities, and especially those based on communities of place, may rest upon a series of normative assumptions about dementia and about the relational context of people living with the condition.
Evidence from service-oriented research shows that people with dementia who live alone are more prone to (unplanned) hospitalisation (Ennis et al, 2014); are at greater risk of malnutrition (Nourhashemi et al, 2005); are likely to be admitted to long-term care at an earlier point in their journey with dementia (Yaffe et al, 2002); are often less well connected to formal services (Webber et al, 1994); and lack the advocacy of a co-resident carer (Eichler et al, 2016).
Neighbourhoods have been integral to the rapid changes occurring within dementia care in recent years, although have not always been acknowledged as such. Dementia, like aged and mental health care before it has been absorbed into a project of deinstitutionalisation occurring within healthcare systems across much of the affluent west (Anttonen and Karsio, 2016). In the UK, deinstitutionalising dementia has involved large-scale reductions to hospital beds available to people with dementia and reduced duration of stay (Alzheimer's Society, 2009). In basic terms, it has meant the relocation of care and support from one type of material and social setting to another, and as such marks a changing geography of care. In many parts of Europe, this ‘re-placing’ of dementia care has not stalled at the shift to community-based support. The ongoing retrenchment of public services driven by a policy of fiscal consolidation (that is austerity) has led to widespread closures of traditional council-led day care services (Needham, 2014) alongside tightening of eligibility criteria for admission to care homes and for Continuing Health Care (RCN, 2012), resulting in significant reductions in collective forms of community-based provision. People with dementia are increasingly less likely to be clustered in designated care settings while segregated from the wider community. Instead, policy intentions have shifted to supporting people to age in place through a focus on Personalisation (DoH, 2019; Malbon et al, 2019; Manthorpe and Samsi, 2016). However, as with aged care before it, concerns have been raised over the extent of an existing neighbourhood infrastructure to adequately respond to such changes in dementia care (for example, Miranda-Castillo et al, 2010). The potential danger is that people living with the condition may become, in Rowles’ (1978) terms, ‘prisoners of space’; facing the prospect of social isolation and domestic confinement as their lifeworld constricts (Alzheimer's Society, 2013; Moyle at el, 2011).
The advent of the ‘dementia-friendly community’ (DFC), following in the wake of the age-friendly cities movement (WHO, 2007), might be read as a vehicle for policy to address these concerns. Interestingly in the UK, the approach differs between countries. In Scotland, dementia is a devolved matter, with the Holyrood government setting policy which acknowledges the importance of DFCs through the National Dementia Strategy (Scottish Government, 2017).
This chapter explores what neighbourhoods mean for people living with dementia. While the built environment, and the economic and political apparatus they comprise of such as shops, services and localised campaigning, are certainly important, our attention focuses on how people living with dementia understand neighbourhoods as sites of relationally constituted ordinary or everyday social connection, engagement and interaction. The chapter outlines the nature of associations individuals have with the wider social sphere of their immediate locale and considers how these ostensibly geographical proximate (or local) social connections might support people to live as well as they might with dementia. In doing so, it considers why it matters to understand the socio-spatial dimensions of neighbourhoods as relational and interconnected phenomena and considers the importance of thinking about neighbourhoods as more than environments in need of intervention or modification in order to support people living with dementia.
How are neighbourhoods understood in the dementia literature?
In a review published in 2012, Keady and colleagues noted that a surprisingly small amount of literature has focused specifically on the importance of neighbourhoods for people living with dementia. The review identified three domains of activity: outdoor spaces, the built environment, and everyday technologies. The first examines how the outdoor environment can be better designed and/or modified to support people living with dementia. This includes work on the design of streetscapes and road layouts to better support mobility, as well as ongoing work to enable easier access to a range of different environments such as green and recreational spaces. A second attends to navigation and mobility of environments, such as shopping centres, hospitals, museums and grocery stores. The third investigates the use of technologies, including virtual realities, to support access to, or better develop, environments beyond the home (Keady et al, 2012). Since then, a considerable body of work has continued to investigate these areas (Sturge et al, 2021) and continues to provide evidence of the need to better understand why and how people living with dementia interact with their immediate environments outside of the home.
To estimate the prevalence of DSM-V mental disorders in a population of Irish emerging adults
Background
Mental disorders are the leading cause of years lived with disability in youth worldwide. Few studies use gold standard of face to face semi-structured standardized interview tools, and this is a limitation in the estimates of prevalence rates of mental disorder in the extant literature.
Method
Briefly, we recruited a representative sample of 212 adolescents and followed them up over ten years. In this wave of the adolescent brain development study, 103 of the initial 212 participants took part, 50 males and 53 females, with a mean age of 20.87 years (SD = 1.3). Psychopathology was assessed in all participants by trained research psychologists and mental health professionals using the Structured Clinical Interview for DSM-V (SCID).
Result
52.4% of participants had one lifetime mental disorder, the prevalence rates were highest for Major Depressive Episode (25.3%), Social Anxiety (12.6%) and Generalized Anxiety (8.7%). 50.5% had a history of a mental disorder. 27.2% had 1 lifetime diagnosis, 15.5% had 2 and 7.8% had >2.
Conclusion
Rates of mental disorder rapidly increase during emerging adulthood. In a similar Irish study, 55% of young adults met the criteria for lifetime mental disorder. Whilst the rates of mental disorder are high in young people, previous longitudinal research has suggested that many common mental disorders remit by the late twenties. We suggest a need for further research investigating the comparative later functional and economic outcomes of these young people. Research to date is supportive of a need to expand capacity of youth friendly services for prevention and treatment.
Ethical Approval
Ethical approval for the study protocols, including interviews and assessments, along with informed consent documents, was granted by the Beaumont Hospital Medical Ethics Committee in 2016.
Acknowledgements:
1. European Research Council Consolidator Award and Health Research Board Ireland Award to Mary Cannon
2. Health Professionals Fellowship from the Health Research Board Ireland to Helen Coughlan.
‘Dementia-friendly communities’ herald a shift toward the neighbourhood as a locus for the care and support of people with dementia, sparking growing interest in the geographies of dementia care and raising questions over the shifting spatial and social experience of the condition. Existing research claims that many people with dementia experience a ‘shrinking world’ whereby the boundaries to their social and physical worlds gradually constrict over time, leading to a loss of control and independence. This paper reports a five-year, international study that investigated the neighbourhood experience of people with dementia and those who care for and support them. We interrogate the notion of a shrinking world and in so doing highlight an absence of attention paid to the agency and actions of people with dementia themselves. The paper draws together a socio-relational and embodied-material approach to question the adequacy of the shrinking world concept as an explanatory framework and to challenge reliance within policy and practice upon notions of place as fixed or stable. We argue instead for the importance of foregrounding ‘lived place’ and attending to social practices and the networks in which such practices evolve. Our findings have implications for policy and practice, emphasising the need to bolster the agency of people living with dementia as a route to fostering accessible and inclusive neighbourhoods.
This article draws upon six social research studies completed by members of the Dementia and Ageing Research Team at The University of Manchester and their associated networks over an eight-year period (2011–2019) with the aim of constructing a definition of ‘being in the moment’ and situating it within a continuum of moments that could be used to contextualise and frame the lived experience of dementia. Using the approach formulated by Pound et al. (2005) in synthesising qualitative studies, we identified this continuum of moments as comprising four sequential and interlinked steps: (a) ‘creating the moment’, defined as the processes and procedures necessary to enable being in the moment to take place – the time necessary for this to occur can range from fleeting to prolonged; (b) ‘being in the moment’, which refers to the multi-sensory processes involved in a personal or relational interaction and embodied engagement – being in the moment can be sustained through creativity and flow; (c) ‘ending the moment’, defined as when a specific moment is disengaged – this can be triggered by the person(s) involved consciously or subconsciously, or caused by a distraction in the environment or suchlike; and (d) ‘reliving the moment’, which refers to the opportunity for the experience(s) involved in ‘being in the moment’ to be later remembered and shared, however fragmentary, supported or full the recall.
Psychotic experiences (PE) are highly prevalent in childhood and are known to be associated with co-morbid mental health disorders and functional difficulties in adolescence. However, little is known about the long-term outcomes of young people who report PE.
Methods
As part of the Adolescent Brain Development Study, 211 young people were recruited in childhood (mean age 11.7 years) and underwent detailed clinical interviews, with 25% reporting PE. A 10 year follow-up study was completed and 103 participants returned (mean age 20.9 years). Structured clinical interviews for DSM-5 (SCID-5) and interviewer-rated assessments of functioning were conducted. A detailed neuropsychological battery was also administered. Analyses investigated group differences between those who had ever reported PE and controls in early adulthood.
Results
The PE group was at a significantly higher risk of meeting DSM-5 criteria for a current (OR 4.08, CI 1.16–14.29, p = 0.03) and lifetime psychiatric disorder (OR 3.27, CI 1.43–7.47, p = 0.005). They were also at a significantly higher risk of multi-morbid lifetime psychiatric disorders. Significantly lower scores on current social and global functioning measures were observed for the PE group. Overall, there were no differences in neuropsychological performance between groups apart from significantly lower scores on the Stroop Word task and the Purdue Pegboard task for the PE group.
Conclusions
Our findings suggest that reports of PE are associated with poorer mental health and functional outcomes in early adulthood, with some persisting cognitive and motor deficits. Young people who report such symptoms could be considered a target group for interventions to aid functional outcomes.
The extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.
This collection of essays pays tribute to Nancy Freeman Regalado, a ground-breaking scholar in the field of medieval French literature whose research has always pushed beyond disciplinary boundaries. The articles in the volume reflect the depth and diversity of her scholarship, as well as her collaborations with literary critics, philologists, historians, art historians, musicologists, and vocalists - in France, England, and the United States. Inspired by her most recent work, these twenty-four essays are tied together by a single question, rich in ramifications: how does performance shape our understanding of medieval and pre-modern literature and culture, whether the nature of that performance is visual, linguistic, theatrical, musical, religious, didactic, socio-political, or editorial? The studies presented here invite us to look afresh at the interrelationship of audience, author, text, and artifact, to imagine new ways of conceptualizing the creation, transmission, and reception of medieval literature, music, and art.
EGLAL DOSS-QUINBY is Professor of French at Smith College; ROBERTA L. KRUEGER is Professor of French at Hamilton College; E. JANE BURNS is Professor of Women's Studies and Adjunct Professor of Comparative Literature at the University of North Carolina, Chapel Hill.
Contributors: ANNE AZÉMA, RENATE BLUMENFELD-KOSINSKI, CYNTHIA J. BROWN, ELIZABETH A. R. BROWN, MATILDA TOMARYN BRUCKNER, E. JANE BURNS, ARDIS BUTTERFIELD, KIMBERLEE CAMPBELL, ROBERT L. A. CLARK, MARK CRUSE, KATHRYN A. DUYS, ELIZABETH EMERY, SYLVIA HUOT, MARILYN LAWRENCE, KATHLEEN A. LOYSEN, LAURIE POSTLEWATE, EDWARD H. ROESNER, SAMUEL N. ROSENBERG, LUCY FREEMAN SANDLER, PAMELA SHEINGORN, HELEN SOLTERER, JANE H. M. TAYLOR, EVELYN BIRGE VITZ, LORI J. WALTERS, AND MICHEL ZINK.
In this paper, we report progress on “Neighborhoods: our people, our places” an international study about how people living with dementia interact with their neighborhoods. The ideas of social health and citizenship are drawn upon to contextualize the data and make a case for recognizing and understanding the strengths and agency of people with dementia. In particular, we address the lived experience of the environment as a route to better understanding the capabilities, capacities, and competencies of people living with dementia. In doing this, our aim is to demonstrate the contribution of social engagement and environmental support to social health.
Methods:
The study aims to “map” local spaces and networks across three field sites (Manchester, Central Scotland and Linkoping, Sweden). It employs a mix of qualitative and participatory approaches that include mobile and visual methods intended to create knowledge that will inform the design and piloting of a neighborhood-based intervention.
Results:
Our research shows that the neighborhood plays an active role in the lives of people with dementia, setting limits, and constraints but also offering significant opportunities, encompassing forms of help and support as yet rarely discussed in the field of dementia studies. The paper presents new and distinctive insights into the relationship between neighborhoods and everyday life for people with dementia that have important implications for the debate on social health and policy concerning dementia friendly communities.
Conclusion:
We end by reflecting on the messages for policy and practice that are beginning to emerge from this on-going study.
The purpose of this study was to explore further the hypothesis that changes in cognitive function may occur in the mild stages of multiple sclerosis (MS) by determining whether ventricular enlargement was related to cognitive function. Ten measures of ventricular size were made in a sample of 123 MS patients with mild disability and 60 well-matched healthy controls. In addition, sixteen tests of cognitive function and the Beck Depression Inventory were administered. For the MS group, there were significant correlations between the ventricular measures and cognitive performance but not for the normal controls. Scores on the Beck Depression Inventory were not correlated with either cognitive performance or ventricular enlargement. These findings suggest that for the MS group cognitive impairment was related to the disease process but not to the level of depression.
Improving the care provided for people dying in acute healthcare facilities has been identified as a priority for Australian healthcare. Previous observations support the idea that quality care improves outcomes for the dying person as well as for their relatives. To improve care it is essential that there be a clear understanding of which issues require attention. The aim of our project was to improve the understanding of the experiences of family members whose relatives had died on an acute medical ward.
Method:
A mixed-methods approach was adopted for our study. With the approval of the human ethics committee, relatives were approached within three months of the death of their family member and invited to participate in an interview based on a quality-of-dying-and-death (QoDD) tool.
Results:
Of the 50 families approached, 10 agreed to be interviewed. When they were asked to reflect on the experiences of the dying person, the issues that they articulated most strongly related to the need to have time before death to address issues and spend time with important others. With regards to the needs of the dying person's relatives, people articulated strongly that they needed information, support, and evidence of good symptom control. The provision of support post-death was also poignantly highlighted.
Significance of Results:
This study supports observations made in other clinical areas that have identified that timely communication, good symptom control, and ongoing support for both the dying person and their family has important ramifications. Articulating such details is an important part of understanding which aspects of care require attention.
Imprinting control regions (ICRs) play a fundamental role in establishing and maintaining the non-random monoallelic expression of certain genes, via common regulatory elements such as non-coding RNAs and differentially methylated regions (DMRs) of DNA. We recently surveyed DNA methylation levels within four ICRs (H19-ICR, IGF2-DMR, KvDMR, and NESPAS-ICR) in whole-blood genomic DNA from 128 monozygotic (MZ) and 128 dizygotic (DZ) human twin pairs. Our analyses revealed high individual variation and intra-domain covariation in methylation levels across CpGs and emphasized the interaction between epigenetic variation and the underlying genetic sequence in a parent-of-origin fashion. Here, we extend our analysis to conduct two genome-wide screenings of single nucleotide polymorphisms (SNPs) underlying either intra-domain covariation or parent-of-origin-dependent association with methylation status at individual CpG sites located within ICRs. Although genome-wide significance was not surpassed due to sample size limitations, the most significantly associated SNPs found through multiple-trait genome-wide association (MQFAM) included the previously described rs10732516, which is located in the vicinity of the H19-ICR. Similarly, we identified an association between rs965808 and methylation status within the NESPAS-ICR. This SNP is positioned within an intronic region of the overlapping genes GNAS and GNAS-AS1, which are imprinted genes regulated by the NESPAS-ICR. Sixteen other SNPs located in regions apart from the analyzed regions displayed suggestive association with intra-domain methylation. Additionally, we identified 13 SNPs displaying parent-of-origin association with individual methylation sites through family-based association testing. In this exploratory study, we show the value and feasibility of using alternative GWAS approaches in the study of the interaction between epigenetic state and genetic sequence within imprinting regulatory domains. Despite the relatively small sample size, we identified a number of SNPs displaying suggestive association either in a domain-wide or in a parent-of-origin fashion. Nevertheless, these associations will require future experimental validation or replication in larger and independent samples.
Mechanical devices implanted in the body present implications for broad themes in religious thought and experience, including the nature and destiny of the human person, the significance of a person's embodied experience, including the experiences of pain and suffering, the person's relationship to ultimate reality, the divine or the sacred, and the vocation of medicine. Community-constituting convictions and narratives inform the method and content of reasoning about such conceptual questions as whether a moral line should be drawn between therapeutic or enhancement interventions and/or between somatic and neural/cognitive interventions. By attending to these broader community-forming concepts, it is possible to identify three general orienting themes in religious perspectives on incorporated mechanical devices, which we shall designate as perspectives of “appropriation,” “ambivalence,” and “resistance.”
