Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.

BACKGROUND: The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co-resident and non-co-resident family carers of people with dementia engaged with digital technologies during this period. METHODS: Throughout November 2020-February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND-C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. FINDINGS: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face-to-face contact, lack of technological literacy and issues associated with the accessibility of the technology. CONCLUSION: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.

Predictors of loneliness during the Covid-19 pandemic in people with dementia and their carers in England: findings from the DETERMIND-C19 study.

OBJECTIVES: To identify factors that predict the risk of loneliness for people with dementia and carers during a pandemic. METHODS: People with dementia and their carers completed assessments before (July 2019-March 2020; 206 dyads) and after (July-October 2020) the first Covid-19 'lockdown' in England. At follow-up, the analytic sample comprised 67 people with dementia and 108 carers. We built a longitudinal path model with loneliness as an observed outcome. Carer type and social contacts at both measurements were considered. Other social resources (quality of relationship, formal day activities), wellbeing (anxiety, psychological wellbeing) and cognitive impairment were measured with initial level and change using latent growth curves. We adjusted for socio-demographic factors and health at baseline. RESULTS: In carers, higher levels of loneliness were directly associated with non-spouse coresident carer type, level and increase of anxiety in carer, more formal day activities, and higher cognitive impairment in the person with dementia. In people with dementia, non-spouse coresident carer type, and higher initial levels of social resources, wellbeing, and cognitive impairment predicted the changes in these factors; this produced indirect effects on social contacts and loneliness. CONCLUSION: Loneliness in the Covid-19 pandemic appears to be shaped by different mechanisms for people with dementia and their carers. The results suggest that carers of those with dementia may prioritize providing care that protects the person with dementia from loneliness at the cost of experiencing loneliness themselves. Directions for the promotion of adaptive social care during the Covid-19 pandemic and beyond are discussed.

A Cost-Benefit Analysis Simulation for the Digitalisation of Cold Supply Chains.

This paper investigates using simulation to predict the benefits and costs of digitalising cold distribution chains. The study focuses on the distribution of refrigerated beef in the UK, where digitalisation was implemented to re-route cargo carriers. By comparing simulations of both digitalised and non-digitalised supply chains, the study found that digitalisation can reduce beef waste and decrease the number of miles driven per successful delivery, leading to potential cost savings. Note that this work is not attempting to prove that digitalisation is appropriate for the chosen scenario, only to justify a simulation approach as a decision making tool. The proposed modelling approach provides decision-makers with more accurate predictions of the cost-benefit of increased sensorisation in supply chains. By accounting for stochastic and variable parameters, such as weather and demand fluctuations, simulation can be used to identify potential challenges and estimate the economic benefits of digitalisation. Moreover, qualitative assessments of the impact on customer satisfaction and product quality can help decision-makers consider the broader impacts of digitalisation. Overall, the study suggests that simulation can play a crucial role in facilitating informed decisions about the implementation of digital technologies in the food supply chain. By providing a better understanding of the potential costs and benefits of digitalisation, simulation can help organisations make more strategic and effective decisions.

'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.

BACKGROUND AND OBJECTIVES: Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. RESEARCH DESIGN AND METHODS: In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. FINDINGS: Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. CONCLUSIONS: Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

IDEA challenge 2022 dataset: Prototypes from a design Hackathon.

The IDEA Challenge 2022 prototyping dataset comprises a total of 240 prototype entries with 1049 edges (connections) and can provide valuable insights into prototyping practices, offering practical knowledge essential for developing prototyping strategies and generating hypotheses for future studies. Data were collected using Pro2booth - an online platform which captured comprehensive information about prototypes and participating teams' development process, including details about the creators, purpose, timing, and methods of creation. It is particularly relevant to design researchers, engineering and design students, educators, and industry professionals seeking to enhance their prototyping skills and strategies. It serves as a robust foundation for subsequent studies, allowing for comparative analyses, hypothesis verification, and trend exploration. It also has the potential to inform meta-analyses across similar design scenarios, providing a comprehensive understanding of prototyping processes.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic.

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants' rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Returning employees back to work: developing a measure for Supervisors to Support Return to Work (SSRW).

INTRODUCTION: Evidence suggests that supervisors' behaviors have a strong influence on employees' health and well-being outcomes. Few have examined the specific behaviors associated with managing an employee back to work following long-term sick leave. This study describes the development of a behavior measure for Supervisors to Support Return to Work (SSRW) using qualitative and quantitative research methods. METHODS: Qualitative data were collected between 2008 and 2010 from a UK population of organisational stakeholders (N = 142), line managers (N = 20) and employees (N = 26). Data from these samples were used to develop a 42 item questionnaire and to validate it using a further sample of line managers (N = 186) and employees (N = 359). RESULTS: Based on a factor structure and reliability results, four scales emerged. The measure demonstrated good internal reliability, construct and concurrent validity. Longitudinal data analyses demonstrated test-retest reliability and promising predictive validity. CONCLUSIONS: This is a potentially valuable tool in research and in organisational settings, both during long-term sick leave and after employees have returned to work.

Required parameters for modelling heterogeneous geographically dispersed manufacturing systems.

COVID-19 and global crises/events are driving governments to rethink their national manufacturing strategies. The drastic change of societal conditions has exposed our reliance on a constrained set of production practices. Furthermore, the future manufacturing landscape indicates - supply chain crises, trade agreements and natural disasters - a high level of volatility which requires a response that is far from being achieved. While these emergent challenges have called the efficacy of established practices into question, new manufacturing technologies, such as Additive Manufacturing (AM), present the capability to provide a solution. One proposal is agent-based brokering of AM which could be a method for tackling local, regional, national, and international production needs. However, to achieve the reality of brokered AM, it is imperative that the diversity of AM capability is considered. Diversity that existing homogeneous modelling of AM and manufacturing systems rarely consider or capture. This paper conceptualizes the reality of AM systems and elucidates parameters that are necessary for successful modelling and subsequent co-ordination. Having presented the required parameters the paper continues to discuss requisite levels of abstraction, suitable performance metrics and the role of humans in agent-based manufacturing systems.

Care home practitioners' perceptions of the barriers and facilitators for using off-the-shelf gaming technology with people with dementia.

Background: Off-the-shelf digital gaming technology has been shown to support the well-being of people with dementia. Yet, to date, it is rarely adopted within dementia care practice, particularly within care homes. Drawing on a descriptive, qualitative approach, this is the first study that has sought to explore care home practitioners' perceptions of the barriers and facilitators for using gaming technology within their workplace. Method: Data were collected across eight focus groups in the south of England with a total of 39 care home workers. These were analysed inductively following the 6-stage thematic process as outlined by Braun and Clarke (2006). Findings: Three themes, constructed from the data suggested, the care environment, staff knowledge and skills for inclusive gaming, and staff perceptions about capabilities (their own and those of people with dementia) inhibited or facilitated the use of gaming technology in care homes. The findings were interpreted through a combination of the Capability, Opportunity, Motivation and Behaviour model and the Theoretical Domains Framework to provide theory-based insights into the mechanisms for supporting behaviour change and implementation within the care home context. Conclusions: We argue for the need to target wider institutional barriers alongside providing inclusive training for care staff on incorporating gaming technology within their person-centred care approaches. Through these mechanisms, they can be provided with the capabilities, opportunities and motivation to integrate gaming technology within their practice, and thus facilitate the process of culture change within care homes.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

Experiences of rural life among community-dwelling older men with dementia and their implications for social inclusion.

Current international dementia care policies focus on creating 'dementia-friendly' communities that aim to support the social inclusion of people with dementia. Although it is known that the geo-socio-cultural rural environment can impact on the experiences of people living with dementia, this can be overlooked when exploring and implementing social inclusion policies. This paper addresses an important gap in the literature by exploring the perceptions of daily life for older men (65+ years) living with dementia in three rural areas of England. Open interviews were conducted with 17 rural-dwelling older men with dementia and the data elicited were analysed thematically to construct two higher order themes. The first focussed on 'Cracking on with life in a rural idyll' and highlighted the benefits of rural living including the pleasant, natural environment, supportive informal networks and some accessible formal dementia support. The second presented 'A challenge to the idyll' and outlined difficulties the men faced including a lack of dementia awareness amongst their family and the wider rural community as well as the physical and internal motivational barriers associated with the rural landscape and their dementia. The findings were interpreted through a lens of social inclusion and demonstrated how the geo-socio-cultural rural environment both enabled and inhibited facets of the men's experiences of life in their communities. Based on these findings, the paper offers recommendations for practitioners, researchers and policy makers wishing to promote social inclusion in rural-dwelling older men living with dementia.

Effectiveness of cognitive stimulation for dementia: A systematic review and meta-analysis.

Cognitive stimulation (CS) is a nonpharmacological intervention often involving group activities and social interaction used to treat cognitive declines in people with dementia. This preregistered systematic review and meta-analysis evaluated the effectiveness of CS in producing benefits on cognition (primary outcome) and quality of life, activities of daily living, and psychological symptoms (secondary outcomes) across 44 randomized-controlled trials comprising 45 comparisons including 2,444 participants. A medium-sized effect (g = .49) on global cognition was found immediately after the intervention and was supported by decisive Bayesian evidence. Clinical relevance is defined as a reduction of 3 to 4 points on the Alzheimer's Disease Assessment Scale Cognitive subscale; the average attenuation of cognitive decline observed was 2.41 points (after removing 1 outlier). Therefore, the observed decline was of borderline clinical relevance. CS was also found to significantly improve memory, activities of daily living, depressive symptoms, and dementia ratings; most of these effects were supported by substantial and strong Bayesian evidence. No significant effects were found for global cognition at 1 to 10 months follow-up assessment for language, quality of life, anxiety, and behavior symptoms. However, evidence for the absence of these effects was ambiguous. A review of study bias highlighted that most studies lacked active, double-blinded controls, potentially leading to an overestimation of the effect, and making it difficult to conclusively attribute the observed improvements to the CS intervention. Hence, although effects are promising, the methodological issues highlight there is still a need for better controlled studies that provide more compelling evidence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Tackling Root Causes Upstream of Unhealthy Urban Development (TRUUD): Protocol of a five-year prevention research consortium.

Poor quality urban environments substantially increase non-communicable disease. Responsibility for associated decision-making is dispersed across multiple agents and systems: fast growing urban authorities are the primary gatekeepers of new development and change in the UK, yet the driving forces are remote private sector interests supported by a political economy focused on short-termism and consumption-based growth. Economic valuation of externalities is widely thought to be fundamental, yet evidence on how to value and integrate it into urban development decision-making is limited, and it forms only a part of the decision-making landscape. Researchers must find new ways of integrating socio-environmental costs at numerous key leverage points across multiple complex systems. This mixed-methods study comprises of six highly integrated work packages. It aims to develop and test a multi-action intervention in two urban areas: one on large-scale mixed-use development, the other on major transport. The core intervention is the co-production with key stakeholders through interviews, workshops, and participatory action research, of three areas of evidence: economic valuations of changed health outcomes; community-led media on health inequalities; and routes to potential impact mapped through co-production with key decision-makers, advisors and the lay public. This will be achieved by: mapping system of actors and processes involved in each case study; developing, testing and refining the combined intervention; evaluating the extent to which policy and practice changes amongst our target users, and the likelihood of impact on non-communicable diseases (NCDs) downstream. The integration of such diverse disciplines and sectors presents multiple practical/operational issues. The programme is testing new approaches to research, notably with regards practitioner-researcher integration and transdisciplinary research co-leadership. Other critical risks relate to urban development timescales, uncertainties in upstream-downstream causality, and the demonstration of impact.

Pandemics, vulnerability, and prevention: time to fundamentally reassess how we value and communicate risk?: CITIES, HEALTH and COVID-19: Initial reflections and future challenges.

For over a decade, pandemics have been on the UK National Risk Register as both the likeliest and most severe of threats. Non-infectious 'lifestyle' diseases were already crippling our healthcare services and our economy. COVID-19 has exposed two critical vulnerabilities: firstly, the UK's failure to adequately assess and communicate the severity of non-communicable disease; secondly, the health inequalities across our society, due not least to the poor quality of our urban environments. This suggests a potentially disastrous lack of preventative action and risk management more generally, notably with regards to the existential risks from the climate and ecological crises.

'Well I'm still the Diva!' Enabling people with dementia to express their identity through graffiti arts: Innovative practice.

This article reports on a pilot study that investigated the use of graffiti arts as a medium for promoting self-expression in people with dementia. Two people with dementia attended a series of workshops with a graffiti artist where they explored their feelings of changing identity following their dementia diagnoses. As part of the workshops, they were encouraged to develop a personal 'tag' or signature to portray their sense of identity and a piece of street art to express 'their message'. These completed artworks were displayed in a public space in Bournemouth, UK.

Assistive Technologies to Address Capabilities of People with Dementia: From Research to Practice.

Assistive technologies became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyze how assistive technologies can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where assistive technologies can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past 15 years (2000-2015), discusses current issues in the design, development and economic model of assistive technologies for people with dementia, and covers how these technologies are being used and assessed.