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.

Investigating the combined and unique contributions of positive psychological traits to sleep and exploring emotion regulation as a common mediator.

The identification of variables which facilitate good quality and quantity sleep represents an important step in tackling the current global sleep loss epidemic. Previous research has established links between good sleep and the positive psychological traits of mindfulness, self-compassion, gratitude and optimism. However, studies have typically focused on single traits, limiting understanding of their collective and independent associations. The two studies reported here address this gap by exploring the combined and unique contributions of mindfulness, self-compassion, gratitude and optimism to sleep; Study 2 further investigated emotion regulation as a common underlying mechanism. Participants in both studies (Study 1 N = 268; Study 2 N = 333) completed online questionnaires assessing the four positive psychological traits and sleep quality and quantity; participants in Study 2 also completed measures of adaptive and maladaptive emotion regulation. Multiple regression analyses revealed that mindfulness, self-compassion, gratitude and optimism collectively accounted for 24.96% (Study 1) and 15.81% (Study 2) of the variance in overall sleep quality and quantity. Optimism and mindfulness emerged as significant linear predictors in their own right, with higher levels of optimism and mindfulness respectively being associated with better sleep. Study 2 further identified maladaptive emotion regulation as a common mediating mechanism. Findings highlight the importance of positive psychological traits in relation to sleep and indicate that optimism and mindfulness might make unique contributions to the prediction of sleep outcomes. Findings also flag emotion regulation as a potential common mediator of associations between positive psychological traits and sleep.

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.

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.

The Impact of Asking Intention or Self-Prediction Questions on Subsequent Behavior: A Meta-Analysis.

The current meta-analysis estimated the magnitude of the impact of asking intention and self-prediction questions on rates of subsequent behavior, and examined mediators and moderators of this question-behavior effect (QBE). Random-effects meta-analysis on 116 published tests of the effect indicated that intention/prediction questions have a small positive effect on behavior (d+ = 0.24). Little support was observed for attitude accessibility, cognitive dissonance, behavioral simulation, or processing fluency explanations of the QBE. Multivariate analyses indicated significant effects of social desirability of behavior/behavior domain (larger effects for more desirable and less risky behaviors), difficulty of behavior (larger effects for easy-to-perform behaviors), and sample type (larger effects among student samples). Although this review controls for co-occurrence of moderators in multivariate analyses, future primary research should systematically vary moderators in fully factorial designs. Further primary research is also needed to unravel the mechanisms underlying different variants of the QBE.

Helping the heart grow fonder during absence: Daydreaming about significant others replenishes connectedness after induced loneliness.

People are known to engage in behaviours aimed at replenishing social connectedness after their sense of belonging is threatened. We explored whether the mental strategy of daydreaming about significant others could have similar effects by acting as an imaginary substitute when loved ones are unavailable. Following a loneliness induction, participants (N = 126) were asked to either daydream about a significant other, daydream about a non-social scenario or complete a control task. Social daydreamers showed significantly increased feelings of connection, love and belonging compared to non-social daydreamers and control participants. Consistent with the proposition that social daydreaming replenished connectedness, social daydreamers also behaved more pro-socially and expressed less of a desire to interact with others after daydreaming. These findings demonstrate that through imagination, social daydreaming can replenish connectedness providing a potential strategy for enhancing socio-emotional well-being.

Love is the triumph of the imagination: Daydreams about significant others are associated with increased happiness, love and connection.

Social relationships and interactions contribute to daily emotional well-being. The emotional benefits that come from engaging with others are known to arise from real events, but do they also come from the imagination during daydreaming activity? Using experience sampling methodology with 101 participants, we obtained 371 reports of naturally occurring daydreams with social and non-social content and self-reported feelings before and after daydreaming. Social, but not non-social, daydreams were associated with increased happiness, love and connection and this effect was not solely attributable to the emotional content of the daydreams. These effects were only present when participants were lacking in these feelings before daydreaming and when the daydream involved imagining others with whom the daydreamer had a high quality relationship. Findings are consistent with the idea that social daydreams may function to regulate emotion: imagining close others may serve the current emotional needs of daydreamers by increasing positive feelings towards themselves and others.

Positive psychological traits predict future sleep quality and quantity: exploring emotion regulation as a common mediator.

OBJECTIVE: Mindfulness, self-compassion, gratitude, and optimism have each been associated with better sleep quality and quantity; however, their collective and relative contributions to future sleep outcomes remain unexplored. The current study therefore investigated whether baseline levels of these positive psychological traits could predict subsequent sleep quality and quantity. In addition, emotion regulation was examined as a potential common mediator of the relationships between each of the positive traits and sleep. METHODS AND MEASURES: A prospective, correlational design was employed. Student participants (N = 220) completed self-report measures of mindfulness, self-compassion, gratitude, optimism, emotion regulation and sleep quality and quantity at three separate time-points, each approximately 12 wk apart. RESULTS: Hierarchical regression analyses indicated that, collectively, the positive traits at baseline predicted better sleep quality and quantity 12 wk and 24 wk later. Optimism emerged as a unique predictor of sleep at each time-point, with higher levels of optimism predicting better sleep. Maladaptive emotion regulation mediated the relationships between optimism and sleep and self-compassion and sleep. CONCLUSION: Findings are consistent with the idea that positive psychological traits might help to facilitate good sleep quality and quantity and indicate that reductions in maladaptive emotion regulation may underpin associations between some positive traits and sleep.

Mind-wandering and negative mood: does one thing really lead to another?

Mind-wandering is closely connected with negative mood. Whether negative mood is a cause or consequence of mind-wandering remains an important, unresolved, issue. We sought to clarify the direction of this relationship by measuring mood before and after mind-wandering. We also measured the affective content, time-orientation and relevance of mind-wandering to current concerns to explore whether the link between mind-wandering and negative mood might be explained by these characteristics. A novel experience-sampling technique with smartphone application prompted participants to answer questions about mind-wandering and mood across 7 days. While sadness tended to precede mind-wandering, mind-wandering itself was not associated with later mood and only predicted feeling worse if its content was negative. We also found prior sadness predicted retrospective mind-wandering, and prior negative mood predicted mind-wandering to current concerns. Our findings provide new insight into how mood and mind-wandering relate but suggest mind-wandering is not inherently detrimental to well-being.

Achieving the same for less: improving mood depletes blood glucose for people with poor (but not good) emotion control.

Previous studies have found that acts of self-control like emotion regulation deplete blood glucose levels. The present experiment investigated the hypothesis that the extent to which people's blood glucose levels decline during emotion regulation attempts is influenced by whether they believe themselves to be good or poor at emotion control. We found that although good and poor emotion regulators were equally able to achieve positive and negative moods, the blood glucose of poor emotion regulators was reduced after performing an affect-improving task, whereas the blood glucose of good emotion regulators remained unchanged. As evidence suggests that glucose is a limited energy resource upon which self-control relies, the implication is that good emotion regulators are able to achieve the same positive mood with less cost to their self-regulatory resource. Thus, depletion may not be an inevitable consequence of engaging in emotion regulation.

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.

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.

Shifting attention between modalities: Revisiting the modality-shift effect in autism.

Selective attention to a sensory modality has been observed experimentally in studies of the modality-shift effect - a relative performance benefit for targets preceded by a target in the same modality, compared to a different modality. Differences in selective attention are commonly observed in autism and we investigated whether exogenous (automatic) shift costs between modalities are increased. Autistic adults and neurotypical controls made speeded discrimination responses to simple visual, tactile and auditory targets. Shift costs were observed for each target modality in participant response times and were largest for auditory targets, reflective of fast responses on auditory repeat trials. Critically, shift costs were similar between the groups. However, integrating speed and accuracy data using drift-diffusion modelling revealed that shift costs in drift rates (reflecting the quality of information extracted from the stimulus) were reduced for autistic participants compared with neurotypicals. It may be that, unlike neurotypicals, there is little difference between attention within and between sensory modalities for autistic people. This finding also highlights the benefit of combining reaction time and accuracy data using decision models to better characterise selective attention in autism.

Emotion regulation and decision-making in persons with dementia: A scoping review.

BACKGROUND AND OBJECTIVES: Emotion is integral to decision-making, and emotion regulation is associated with improved well-being in older age. Persons with dementia are likely to experience impairments in emotion regulation processes that can potentially contribute to differential decision-making and well-being outcomes. To promote the development of theoretical models of well-being in dementia, we review the quantitative evidence concerning the associations between emotion regulation and decision-making in dementia. METHODS: Scoping review. RESULTS: Seven studies of persons with dementia met our criteria. In persons with frontotemporal lobar degeneration, emotion regulation processes that precede the emotional experience were associated with decision-making in a moral (but not uncertainty) context. Independent of type of dementia, evidence concerning the associations between emotion regulation processes that occur after emotion is experienced and decision-making was mixed and drew on different methodologies. No studies relating to the associations between decision-making in dementia and several emotion regulation processes and strategies were found. CONCLUSIONS: In this review, we sought to clarify the concept of everyday decision-making in dementia and map the current state of evidence concerning its associations with emotion regulation. Our findings show that emotion regulation processes are associated with decision-making in dementia, depending on type of decision-making assessment and emotional experience. We outline the gaps in the literature to set a research agenda for promoting our understanding of how emotion regulation processes can shape the various decisions that are made by persons with dementia on a daily basis.

Self-determination theory interventions for health behavior change: Meta-analysis and meta-analytic structural equation modeling of randomized controlled trials.

OBJECTIVE: We conducted a meta-analysis of randomized controlled trials (RCTs) to promote health behavior change based on self-determination theory (SDT). The review aimed to (a) quantify the impact of SDT interventions on health behaviors, (b) test mediation by theoretically specified variables (autonomous motivation and perceived competence), and (c) identify moderators of intervention effectiveness. METHOD: Computerized searches and additional strategies identified 56 articles that yielded 65 independent tests of SDT interventions. Random effects meta-analysis and metaregressions were conducted via STATA; meta-analytic structural equation modeling (MASEM) was used to test mediation. RESULTS: The sample-weighted average effect size for SDT interventions was d+ = .23, and there were significant effects for physical activity, sedentary behavior, diet, alcohol consumption, and smoking cessation (.16 ≥ d+ ≥ .29). Effect sizes exhibited both publication bias and small sample bias but remained significantly different from zero, albeit of smaller magnitude, after correction for bias (d+ ≥ .15). MASEM indicated that autonomous motivation and perceived competence mediated intervention effects on behavior. Metaregression analyses indicated that features of the sample, intervention, or methodology generally did not moderate effect sizes. CONCLUSION: The present review indicates that SDT interventions have a significant but small effect on health behavior change and suggests several directions for future research. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Reducing exposure to ultraviolet radiation from the sun and indoor tanning: A meta-analysis.

Objective: Skin cancer is the most frequently diagnosed cancer and rates are increasing because of global warming. This article reports a meta-analysis of randomized controlled trials of behavioral interventions to reduce exposure to ultraviolet radiation (UVR). The review aimed to (a) quantify the magnitude of intervention effects on indoor tanning, sun exposure, and sunscreen use, and (b) determine which intervention strategies maximize behavior change. Method: Out of 17,437 records identified via literature searches, 190 independent tests (N = 89,365) met the inclusion criteria. Sample, intervention, and methodological characteristics, and change techniques were coded, and random effects meta-analyses and metaregressions were conducted. Results: The sample-weighted average effect size across all studies was d+ = .193 (95% confidence interval, CI [.161, .226]), and there were significant effects on indoor tanning, sun exposure, and sunscreen use (d+ = .080, .149, and .196, respectively). However, there was evidence of publication bias, and trim and fill analyses indicated that the corrected effects for sun exposure and sunscreen use were of very small magnitude (d+ ~ .06) and were not significantly different from zero for indoor tanning (d+ = -.011, 95% CI [-.096, .074]). Metaregression analyses identified several intervention strategies that predicted effect sizes. For instance, interventions delivered individually that promoted alternatives to tanning were associated with larger effect sizes for indoor tanning. Conclusion: Interventions to date have had only a modest impact on behavioral exposure to UVR. The present findings offer new insights into how the effectiveness of future interventions can be improved. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

The psychological wellbeing outcomes of nonpharmacological interventions for older persons with insomnia symptoms: A systematic review and meta-analysis.

Nonpharmacological treatment of insomnia in older persons has been associated with reduced insomnia symptoms and increased psychological wellbeing. This systematic review and meta-analysis examined whether nonpharmacological interventions can promote wellbeing indicators in older persons who experience insomnia symptoms and investigated the components of these interventions. Twenty studies met inclusion criteria. Psychological wellbeing outcomes included symptoms of depression, anxiety, mental health-related quality of life, and fatigue. Interventions significantly reduced depression and fatigue symptoms in most of the studies that included these outcomes. Findings of our qualitative analysis suggest that mindfulness-based interventions in particular can potentially reduce depression symptoms in older persons with insomnia symptoms. Meta-analyses of studies that included psychological wellbeing outcomes showed small-medium weighted mean effects indicating reductions in symptoms of depression, anxiety, and fatigue. The results suggest that nonpharmacological interventions for older persons with insomnia symptoms can potentially reduce depression and fatigue symptoms and highlight interventions that may be particularly valuable for this purpose.

Promoting physical activity among cancer survivors: Meta-analysis and meta-CART analysis of randomized controlled trials.

OBJECTIVE: We conducted a meta-analysis of physical activity interventions among cancer survivors to (a) quantify the magnitude of intervention effects on physical activity and (b) determine what combination of intervention strategies maximizes behavior change. METHOD: Out of 32,626 records that were located using computerized searches, 138 independent tests (N = 13,050) met the inclusion criteria for the review. We developed a bespoke taxonomy of 34 categories of techniques designed to promote psychological change, and categorized sample, intervention, and methodological characteristics. Random effects meta-analysis and metaregressions were conducted; effect size data were also submitted to meta-analysis with classification and regression trees (i.e., meta-CART). RESULTS: The sample-weighted average effect size for physical activity interventions was d+ = .35, equivalent to an increase of 1,149 steps per day. Effect sizes exhibited both publication bias and small sample bias but remained significantly different from zero, albeit of smaller magnitude (d+ ≥ .20), after correction for bias. Meta-CART indicated that the major difference in effectiveness was attributable to supervised versus unsupervised programs (d+ = .49 vs. .26). Greater contact time was associated with larger effects in supervised programs. For unsupervised programs, establishing outcome expectations, greater contact time, and targeting overweight or sedentary participants each predicted greater program effectiveness, whereas prompting barrier identification and providing workbooks were associated with smaller effect sizes. CONCLUSION: The present review indicates that interventions have a small but significant effect on physical activity among cancer survivors and offers insights into how the effectiveness of future interventions might be improved. (PsycINFO Database Record (c) 2019 APA, all rights reserved).