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The extent to which people with dementia are involved in everyday decision-making is unclear. We explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. We used IDEAL data for 1182 people with dementia and their caregivers. Baseline mean score on the decision-making involvement scale was 31/45; it minimally declined over time. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making.

Data: IDEAL data were deposited with the UK Data Archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found at http://reshare.ukdataservice.ac.uk/854293/. Ethical standards: IDEAL was approved by the Wales Research Ethics Committee 5 (reference 13/WA/0405), the Scotland A Research Ethics Committee (reference 14/SS/0010) and the Ethics Committee of the School of Psychology, Bangor University (reference 2014-11684). Copyright © The Author(s), 2022. There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) (grant number ES/L001853/2); Investigators: L. Clare, I. R. Jones, C. Victor, J. V. Hindle, R. W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, J. A. Pickett, C. Quinn, J. Rusted and J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by the Alzheimer's Society (grant number 348, AS-PR2-16-001); Investigators: L. Clare, I. R. Jones, C. Victor, C. Ballard, A. Hillman, J. V. Hindle, J. Hughes, R. W. Jones, M. Knapp, R. Litherland, A. Martyr, F. E. Matthews, R. G. Morris, S. M. Nelis, C. Quinn and J. Rusted.

How people understand and adapt to living with dementia may influence well-being. Leventhal's Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. "Disease" representations were associated with better cognition and younger age, while "aging" and "no problem" representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Background and ObjectivesCerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) is the most common monogenic form of stroke and early-onset dementia. We determined the prevalence of vascular cognitive impairment (VCI) in a group of patients with CADASIL and investigated which factors were associated with VCI risk, including clinical, genetic, and MRI parameters.MethodsCognition was assessed in patients with genetically confirmed CADASIL (n = 176) and healthy controls (n = 265) (mean [SD] age 50.95 [11.35] vs 52.37 [7.93] years) using the Brief Memory and Executive Test (BMET) and the Montreal Cognitive Assessment (MoCA). VCI was defined according to previously validated cutoffs. We determined the prevalence of VCI and its associations with clinical risk factors, mutation location (epidermal growth factor–like repeats [EGFr] 1–6 vs EGFr 7–34), and MRI markers of small vessel disease.ResultsVCI was more common in patients with CADASIL than in controls; 39.8 vs 10.2% on the BMET and 47.7% vs 19.6% on the MOCA. Patients with CADASIL had worse performance across all cognitive domains. A history of stroke was associated with VCI on the BMET (OR 2.12, 95% CI [1.05, 4.27] p = 0.04) and MoCA (OR 2.55 [1.21, 5.41] p = 0.01), after controlling for age and sex. There was no association of VCI with mutation site. Lacune count was the only MRI parameter independently associated with VCI on the BMET (OR: 1.63, 95% CI [1.10, 2.41], p = 0.014), after controlling for other MRI parameters. These associations persisted after controlling for education in the sensitivity analyses.DiscussionVCI is present in almost half of the patients with CADASIL with a mean age of 50 years. Stroke and lacune count on MRI were both independent predictors of VCI on the BMET.

There is now considerable evidence regarding the types of interventions that are effective at remediating reading disabilities on average. It is generally unclear, however, what predicts the magnitude of individual-level change following a given intervention. We examine new predictors of intervention gains that are theoretically grounded in computational models of reading and focus on individual differences in the functional organization of the reading system. Specifically, we estimate the extent to which children with reading disabilities (n=118 3(rd)-4(th) graders) rely on two sources of information during an oral word reading task – print-speech correspondences and semantic imageability – before and after a phonologically-weighted intervention. We show that children who relied more on print-speech regularities and less on imageability pre-intervention had better intervention gains. In parallel, children who over the course of the intervention exhibited greater increases in their reliance on print-speech correspondences and greater decreases in their reliance on imageability had better intervention outcomes. Importantly, these two factors were differentially related to specific reading task outcomes, with greater reliance on print-speech correspondences associated with pseudoword naming, while (lesser) reliance on imageability related to word reading and comprehension. We discuss the implications of these findings for theoretical models of reading acquisition and educational practice.

ObjectivesIt has been suggested that diffusion tensor imaging (DTI) measures sensitive to white matter (WM) damage may predict future dementia risk not only in cerebral small vessel disease (SVD), but also in mild cognitive impairment. To determine whether DTI measures were associated with cognition cross-sectionally and predicted future dementia risk across the full range of SVD severity, we established the International OPtimising mulTImodal MRI markers for use as surrogate markers in trials of Vascular Cognitive Impairment due to cerebrAl small vesseL disease collaboration which included six cohorts.MethodsAmong the six cohorts, prospective data with dementia incidences were available for three cohorts. The associations between six different DTI measures and cognition or dementia conversion were tested. The additional contribution to prediction of other MRI markers of SVD was also determined.ResultsThe DTI measure mean diffusivity (MD) median correlated with cognition in all cohorts, demonstrating the contribution of WM damage to cognition. Adding MD median significantly improved the model fit compared to the clinical risk model alone and further increased in all single-centre SVD cohorts when adding conventional MRI measures. Baseline MD median predicted dementia conversion. In a study with severe SVD (SCANS) change in MD median also predicted dementia conversion. The area under the curve was best when employing a multimodal MRI model using both DTI measures and other MRI measures.ConclusionsOur results support a central role for WM alterations in dementia pathogenesis in all cohorts. DTI measures such as MD median may be a useful clinical risk predictor. The contribution of other MRI markers varied according to disease severity.

Background: Impaired awareness of ability is common in dementia and has important clinical implications. Evidence from different clinical groups has shown that awareness can vary according to whether evaluation refers to self or other performance. Objective: The present study aimed to investigate awareness for self- and other-performance in Alzheimer’s disease (AD) patients, exploring if results vary according to cognitive domain of the tasks. It was hypothesized that, particularly for memory tasks, AD patients would be inaccurate in relation to self-but not other-performance. Methods: Twenty-two mild to moderate AD patients and twenty-two healthy older adults participated. Two tasks, with reaction time and working memory tasks, were carried out, and each had a success and a failure condition. Participants were asked to estimate their own performance, as well as the performance of another person they observed. Awareness of performance was measured comparing participant estimations of performance with actual performance. Results: For both the reaction time and working memory tasks, results indicate that participants from both groups overestimated the performance in the failure condition and underestimated the performance in the success condition. They tended to overestimate more the performance of the other person compared to themselves. Additionally, for the working memory task, AD patients tended to overestimate more performances compared to controls. Conclusion: Findings suggest that the AD and control groups present the same pattern, with attribution of better performance to another person. For the AD group, the pattern of response was different for memory tasks, which may suggest domain-specific limited awareness.

Young children with developmental disabilities (DD) exhibit a range of strengths and weaknesses in cognitive, language, and adaptive skills. Identifying individual patterns of abilities across these domains is important for informing interventions. This study examines how 129 toddlers with significant developmental delays and less than 10 spoken words perform across different developmental domains and assessment methods (i.e., caregiver report and clinician-administered tests). Children exhibited statistically and clinically meaningful strengths and weaknesses across developmental domains, which may have important implications for differential interventions. Caregiver-reported and clinician-rated measures of cognition, language and adaptive functioning were highly related. However, the relation between caregiver report and clinician ratings was weaker for a subgroup of children with relatively more limited expressive language compared to other children in the sample.

Supplementary data: gbac090_suppl_Supplementary_Material - pdf file available at: https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/psychsocgerontology/PAP/10.1093_geronb_gbac090/1/gbac090_suppl_supplementary_material.pdf?Expires=1661590381&Signature=LZMcoPasZx7P4FmArSdHIbyY~IPmvvvynJsvUpwKIxpHdk1Xz-OeJtcB6omaC7S5bSZQLcFumkATXXr2w9JnWsDrazbU7eGImW8HO1pkLnbLDtvREccAyvrZ5RUpIkjMZ3b1sIt3OxQRNONMf7~VlVO8967i2yd6lOJ4woqcNh5BEuTEfzRGfYsxYhAKbvduSDPMa4octdiV0MMm-puaPQgWBgf-vtRd02oT4Ms2ulnScSyVU~ur3sWyZhAuW1AdLNUhoJknfslolKYq~C2A-l6Bq3KGK-ImhHKYOo5C1WzXhvnWY0C~~vu10f08-QOgF7dlfKlPt8R-J97Dii38rw__&Key-Pair-Id=APKAIE5G5CRDK6RD3PGA Copyright © The Author(s) 2022. Background and objectives: Understanding whether and how caregivers’ capability to ‘live well’ changes over time, and the factors associated with change, could help target effective caregiver support. Research design and methods: We analyzed three timepoints (12 months apart) of IDEAL cohort data from co-resident spouse caregivers of community-dwelling individuals who had mild-to-moderate dementia at baseline, using latent growth and growth mixture models. Capability to ‘live well’ was derived from measures of quality of life, well-being, and satisfaction with life. Results: Data from 995 spouse caregivers at Time 1, 780 at Time 2, and 601 at Time 3 were included. Mean ‘living well’ score decreased slightly over time. We identified three classes of caregivers: one with higher baseline scores declining slightly over time (Stable; 66.8%), one with low baseline scores remaining stable (Lower Stable; 26.0%), and one with higher baseline scores showing marked decline (Declining; 7.2%). Scores on baseline measures differentiated the Lower Stable, but not the Declining, from the Stable class. Longitudinally, the Declining class was associated with care recipient cognitive decline and increasing hours providing care, as well as caregiver stress and depression. Findings were similar when caregivers with other kin-relationships were included. Discussion and implications: The findings indicate the importance of prompt identification of, and support for, caregivers at risk of declining capability to ‘live well’ and may assist in identifying those caregivers who could benefit most from targeted support. Economic and Social Research Council (ESRC, part of UK Research and Innovation, UKRI) and National Institute for Health and Care Research (NIHR) grant ES/L001853/2 to L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom; Alzheimer‟s Society Centre of Excellence grant 348, ASPR2-16-001 to L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, and J. Rusted. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula.

Objectives We aimed to examine change over time in self-rated quality of life (QoL) in people with mild-to-moderate dementia and identify subgroups with distinct QoL trajectories. Methods We used data from people with mild-to-moderate dementia followed up at 12 and 24 months in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study (baseline n = 1,537). A latent growth model approach examined mean change over time in QoL, assessed with the QoL-AD scale, and investigated associations of baseline demographic, cognitive, and psychological covariates with the intercept and slope of QoL. We employed growth mixture modeling to identify multiple growth trajectories. Results Overall mean QoL scores were stable and no associations with change over time were observed. Four classes of QoL trajectories were identified: 2 with higher baseline QoL scores, labeled Stable (74.9%) and Declining (7.6%), and 2 with lower baseline QoL scores, labeled Stable Lower (13.7%) and Improving (3.8%). The Declining class had higher baseline levels of depression and loneliness, and lower levels of self-esteem and optimism, than the Stable class. The Stable Lower class was characterized by disadvantage related to social structure, poor physical health, functional disability, and low psychological well-being. The Improving class was similar to the Stable Lower class but had lower cognitive test scores. Discussion Understanding individual trajectories can contribute to personalized care planning. Efforts to prevent decline in perceived QoL should primarily target psychological well-being. Efforts to improve QoL for those with poorer QoL should additionally address functional impairment, isolation, and disadvantage related to social structure.

Adolescents with reading disability (RD) participated in a randomized controlled trial evaluating the efficacy of a multiple-component reading intervention with motivational components (PHAST). A total of 514 youth in 6th, 7th, and 8th grade formed instructional groups (4–8) that were randomly assigned to one of three conditions—one of two PHAST interventions (additional comprehension or fluency training) or a remedial reading control condition. Intervention occurred in participants’ schools, 40–60 min daily, 3–5×/week, for 100–125 hr total. Over four outcome assessments, multilevel growth models evaluated intervention/control differences in growth over time, and post-intervention effect sizes. The two PHAST interventions were associated with equivalent positive outcomes, and their data combined. PHAST participants out-performed Control participants on 8 of 16 outcomes, demonstrating greater growth on standardized and experimental reading and spelling outcomes. PHAST-instructed students demonstrated higher sense of reading competence, and increased attributions of reading success to their own abilities. Intervention effect sizes (Hedge’s g) comparing PHAST versus Control growth were larger for foundational reading skills (.78 for nonword decoding, .56 for word identification) than for reading comprehension (.36 for passage comprehension), for which effects were more equivocal. An effect size of .61 was obtained for sense of reading competence. A year later, the PHAST participants demonstrated continued improvement on later-developing reading skills like word reading efficiency, reading fluency, and reading comprehension. Intensive reading intervention in middle school can produce gains on multiple dimensions of reading skill and motivation and foster continuing growth of higher-order reading skills. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

OBJECTIVE To determine whether auditory hallucinations in community-dwelling people with dementia (PwD) living in the community impacted on quality of life (QoL), subjective wellbeing and life satisfaction. DESIGN Cross-sectional cohort study. SETTINGS AND PARTICIPANTS 1251 community-dwelling PwD and caregivers were included in this study. MEASURES Neuropsychiatric Inventory Questionnaire completed by caregiver interview. Mean differences between the absence and presence of auditory hallucinations were compared to scores on three validated measures of living well: QoL in Alzheimer's disease scale (QoL-AD), World Health Organization-Five Well-being Index and Satisfaction with Life Scale. Analysis of covariance determined the confounding contributions of cognition via Mini-Mental State Examination, depression via Geriatric Depression Scale-10, caregiver stress via Relative Stress Scale and whether antipsychotic drugs were prescribed. RESULTS Auditory hallucinations were associated with lower scores for QoL (p

Data availability: IDEAL data were deposited with the UK Data Archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: https://reshare.ukdataservice.ac.uk/854293/. Copyright © 2022 The Author(s). Introduction: Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). Methods: Two measures of ADL (Functional Activities Questionnaire; Dependence Scale) were completed by 1,227 PwD and their informants in the IDEAL cohort study baseline assessment. Self-rated and informant-rated scores were used to calculate discrepancies, which were used as an indicator of awareness of functional ability. Smaller discrepancy scores were considered to reflect greater awareness on the part of PwD. PwD completed questionnaires on depression, personality, comorbidities, neuropsychiatric symptoms, and completed a measure of cognition. Informants provided ratings of stress. Univariable and multiple regressions were used to investigate factors related to ADL discrepancy. Results: A similar pattern of associations were found for both ADL discrepancy scores. Smaller discrepancy scores were associated with higher levels of depression, higher neuroticism, fewer neuropsychiatric symptoms, higher comorbidity, lower carer stress, and receipt of less than 1 hour of care per day from the informant. Discussion/Conclusion: There was a clear pattern of factors that were associated with greater awareness for both measures of functional ability. These factors associated with smaller discrepancy scores could be used to identify PwD who might benefit from targeted interventions to support their independence. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F. Matthews, R. G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society as a Centre of Excellence, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. L. Clare acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula. The views expressed are those of the authors and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer’s Society. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.

BackgroundThe heterogeneity inherent in autism spectrum disorder (ASD) presents a substantial challenge to diagnosis and precision treatment. Heterogeneity across biological etiologies, genetics, neural systems, neurocognitive attributes and clinical subtypes or phenotypes has been observed across individuals with ASD.MethodsIn this study, we aim to investigate the heterogeneity in ASD from a multimodal brain imaging perspective. The Autism Diagnostic Observation Schedule (ADOS) was used as a reference to guide functional and structural MRI fusion. DSM-IV-TR diagnosed Asperger’s disorder (n = 79), pervasive developmental disorder-not otherwise specified [PDD-NOS] (n = 58) and Autistic disorder (n = 92) from ABIDE II were used as discovery cohort, and ABIDE I (n = 400) was used for replication.ResultsDorsolateral prefrontal cortex and superior/middle temporal cortex are the primary common functional–structural covarying cortical brain areas shared among Asperger’s, PDD-NOS and Autistic subgroups. Key differences among the three subtypes are negative functional features within subcortical brain areas, including negative putamen–parahippocampus fractional amplitude of low-frequency fluctuations (fALFF) unique to the Asperger’s subtype; negative fALFF in anterior cingulate cortex unique to PDD-NOS subtype; and negative thalamus–amygdala–caudate fALFF unique to the Autistic subtype. Furthermore, each subtype-specific brain pattern is correlated with different ADOS subdomains, with social interaction as the common subdomain. The identified subtype-specific patterns are only predictive for ASD symptoms manifested in the corresponding subtypes, but not the other subtypes.ConclusionsAlthough ASD has a common neural basis with core deficits linked to social interaction, each ASD subtype is strongly linked to unique brain systems and subdomain symptoms, which may help to better understand the underlying mechanisms of ASD heterogeneity from a multimodal neuroimaging perspective.LimitationsThis study is male based, which cannot be generalized to the female or the general ASD population.

Background: Awareness of the diagnosis or related changes in functioning varies in people with dementia (PwD), with implications for the well-being of PwD and their carers. Measuring awareness in a clinical setting could facilitate tailored support and optimize involvement in personal health and care decisions. This scoping review aimed to identify validated methods of assessing awareness in dementia and appraise their clinical utility. Method: A systematic search was conducted of English-language publications that measured awareness in PwD, in 6 electronic databases. Search terms included dement*, Alzheimer*, Pick disease, and awareness, unawareness, anosognosia, insight, denial, metacognit*, or discrepanc*. Results: We screened 30,634 articles, finding 345 articles that met our inclusion criteria. We identified 76 measures, most commonly using a discrepancy questionnaire comparing evaluations of function by PwD and an informant. There were 30 awareness measures developed and validated for use in dementia populations but few designed for general clinical use. Conclusions: Although we found a range of clinical indications for measuring awareness, there were few studies investigating clinical applications and few tools designed for clinical purposes. Further investigation and development of a person-centered tool could facilitate health and care choices in mild-to-moderate dementia.

Little is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for ‘as long as possible’. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion.

Background a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. Methods this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. Results people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. Conclusion although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.

ObjectiveTo determine whether a simple small vessel disease (SVD) score, which uses information available on rapid visual assessment of clinical MRI scans, predicts risk of cognitive decline and dementia, above that provided by simple clinical measures.MethodsThree prospective longitudinal cohort studies (SCANS [St George's Cognition and Neuroimaging in Stroke], RUN DMC [Radboud University Nijmegen Diffusion Imaging and Magnetic Resonance Imaging Cohort], and the ASPS [Austrian Stroke Prevention Study]), which covered a range of SVD severity from mild and asymptomatic to severe and symptomatic, were included. In all studies, MRI was performed at baseline, cognitive tests repeated during follow-up, and progression to dementia recorded prospectively. Outcome measures were cognitive decline and onset of dementia during follow-up. We determined whether the SVD score predicted risk of cognitive decline and future dementia. We also determined whether using the score to select a group of patients with more severe disease would reduce sample sizes for clinical intervention trials.ResultsIn a pooled analysis of all 3 cohorts, the score improved prediction of dementia (area under the curve [AUC], 0.85; 95% confidence interval [CI], 0.81–0.89) compared with that from clinical risk factors alone (AUC, 0.76; 95% CI, 0.71–0.81). Predictive performance was higher in patients with more severe SVD. Power calculations showed selecting patients with a higher score reduced sample sizes required for hypothetical clinical trials by 40%–66% depending on the outcome measure used.ConclusionsA simple SVD score, easily obtainable from clinical MRI scans and therefore applicable in routine clinical practice, aided prediction of future dementia risk.

Background: The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014–2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1,537 community-dwelling participants with dementia at Wave 1, 1,199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson’s disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.

Background and Objectives:Diffusion tensor imaging (DTI) networks integrate damage from a variety of pathological processes in cerebral small vessel disease (SVD) and may be a sensitive marker to detect treatment effects. We determined whether brain network analysis could detect treatment effects in the PRESERVE trial dataset, in which intensive versus standard blood pressure (BP) lowering was compared. The primary endpoint of DTI had not shown treatment differences.Methods:Subjects with lacunar stroke were randomised to standard (systolic 130-140 mmHg), or intensive (systolic Results:Data were available in 82 subjects; standard n=40 (mean age 66.3±1.5), intensive n=42 (69.6±1.0). Mean (SD) systolic blood pressure was reduced by 13(14) and 23(23) mmHg in the standard and intensive groups respectively (PDiscussion:Brain network analysis may be a sensitive surrogate marker in trials in small vessel disease. This work suggests that measures of brain network efficiency may be more sensitive to the effects of blood pressure control treatment than conventional DTI metrics.Trial Registration Information:The trial is registered with the ISRCTN Registry (ISRCTN37694103; //doi.org/10.1186/ISRCTN37694103) and the NIHR Clinical Research Network (CRN 10962; //public-odp.nihr.ac.uk/QvAJAXZfc/opendoc.htm?document=crncc_users%5Cfind%20a%20clinical%20research%20study.qvw&lang=en-US&host=QVS%40crn-prod-odp-pu&anonymous=true)Classification of Evidence:This study provides Class II evidence that intensive BP lowering in patients with small vessel disease results in improved brain network function when assessed by DTI based brain network metrics.

Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. Results There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Conclusions Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.

Background: Awareness of deficit plays an important role in adjustment following a brain injury and has been noted to impact on engagement with and outcome of rehabilitation. However, there are challenges associated with the assessment of awareness. Aim: To systematically review all instruments used to assess intellectual awareness of deficits following Traumatic Brain Injury (TBI) in adults, and evaluate instrument characteristics (e.g., the format and focus of measures of awareness) and assessment methods adopted. Results: Thirty-four studies, all rated as fair to good quality, were identified and within these twenty-three different assessment tools were adopted. The most common method of assessment was patient-proxy discrepancy, with three frequently used instruments employed in a total of 22 of the 34 studies. Across studies, variability was noted regarding the type of assessment method dependent on various sample demographics (e.g., age of sample) and injury characteristics (e.g., time post injury). Conclusions: There is no consensus on the preferred instrument to assess intellectual awareness of deficits after TBI. Continued instrument development should attempt to incorporate multiple perspectives and assessment should take into account demographic and injury-related factors. An insightful avenue for future research would be to determine which factors are likely to impact awareness measurement.

Supplemental Digital Content is available in the text., Background and Purpose— Cerebral small vessel disease (SVD) is the most common cause of vascular cognitive impairment, with a significant proportion of cases going on to develop dementia. We explore the extent to which diffusion tensor image segmentation technique (DSEG; which characterizes microstructural damage across the cerebrum) predicts both degree of cognitive decline and conversion to dementia, and hence may provide a useful prognostic procedure. Methods— Ninety-nine SVD patients (aged 43–89 years) underwent annual magnetic resonance imaging scanning (for 3 years) and cognitive assessment (for 5 years). DSEG-θ was used as a whole-cerebrum measure of SVD severity. Dementia diagnosis was based Diagnostic and Statistical Manual of Mental Disorders V criteria. Cox regression identified which DSEG measures and vascular risk factors were related to increased risk of dementia. Linear discriminant analysis was used to classify groups of stable versus subsequent dementia diagnosis individuals. Results— DSEG-θ was significantly related to decline in executive function and global cognition (P

Purpose Children with dyslexia often struggle with nonphonological aspects of language and executive functioning. The purpose of this study was to investigate the impact of executive functioning on language abilities at both structural (e.g., grammar in sentences) and functional (e.g., narrative) levels in 92 third- and 4th-grade students with dyslexia. Additionally, we asked if working memory updating contributed a significant amount of variance in narrative language ability beyond what would be expected by students' structural language skills alone. Method Students' language and executive functioning skills were evaluated using a range of language and cognitive measures including the Clinical Evaluation of Language Fundamentals–Fourth Edition ( Semel, Wiig, & Secord, 2003 ), the Peabody Picture Vocabulary Test–Fourth Edition ( Dunn & Dunn, 2007 ), the Test of Narrative Language ( Gillam & Pearson, 2004 ), the Delis–Kaplan Executive Function Scale ( Kaplan, Kramer, & Delis, 2001 ), and the Corsi Block-Tapping Test (WISC-IV Integrated; Kaplan, Fein, Kramer, Delis, & Morris, 2004 ). Results Low correlations between the language measures suggested that each of these assessments captures a unique element of language ability for children with dyslexia. Hierarchical regression analysis indicated that working memory updating accounted for a significant amount of unique variance in oral narrative production beyond what would be expected by structural language ability. Conclusions The range of performance found across language measures suggests that it may be important to include a variety of language measures assessing both structural and functional language skills when evaluating children with dyslexia. Including cognitive measures of executive functioning may also be key to determine if deficits in working memory updating are contributing to functional expressive language difficulties.

Objectives The objectives of the study are to investigate how different levels of functional ability relate to quality of life, well-being, and satisfaction with life, conceptualised as reflecting capability to "live well" in people with dementia. Methods/design Participants were 1496 people with mild-to-moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self-rated and informant-rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well. We also investigated the potential influence of sociodemographic and diagnostic variables, depression, cognition, and carer stress. Results Multivariate multiple regression models found that people with dementia who had the greatest functional impairment according to self-ratings and informant ratings had poorer living well scores than those with the least functional impairment. Sociodemographic and diagnostic factors and cognition had little impact on effect sizes. For self-ratings, depression attenuated the relationship between functional ability and living well, whereas carer stress attenuated informant ratings. Conclusions People with dementia with the least functional impairments had greater capability to live well than those with the most functional impairment. Even subtle perceived difficulties in functional ability had a detrimental effect on the ability of people with dementia to live well. Depression in people with dementia and carer stress in informants influenced these associations, and therefore, these factors should be routinely included in future research studies and clinical assessments.

The comprehensive set of neuronal connections of the human brain, which is known as the human connectomes, has provided valuable insight into neurological and neurodevelopmental disorders. Functional Magnetic Resonance Imaging (fMRI) has facilitated this research by capturing regionally specific brain activity. Resting state fMRI is used to extract the functional connectivity networks, which are edge-weighted complete graphs. In these complete functional connectivity networks, each node represents one brain region or Region of Interest (ROI), and each edge weight represents the strength of functional connectivity of the adjacent ROIs. In order to leverage existing graph mining methodologies, these complete graphs are often made sparse by applying thresholds on weights. This approach can result in loss of discriminative information while addressing the issue of biomarkers detection, i.e. finding discriminative ROIs and connections, given the data of healthy and disabled population. In this work, we demonstrate a novel framework for representing the complete functional connectivity networks in a threshold-free manner and identifying biomarkers by using feature selection algorithms. Additionally, to compute meaningful representations of the discriminative ROIs and connections, we apply tensor decomposition techniques. Experiments on a fMRI dataset of neurodevelopmental reading disabilities show the highly interpretable nature of our approach in finding the biomarkers of the diseases.

The self is a complex and multifaceted phenomenon, encompassing a variety of cognitive processes and psychosocial influences. Considering this, there is a multiplicity of “selves,” the current review suggesting that seven fundamental self-processes can be identified that further our understanding of the experience of dementia. These include (1) an embodied self, manifest as corporeal awareness; (2) an agentic self, related to being an agent and influencing life circumstances; (3) an implicit self, linked to non-conscious self-processing; (4) a critical self, which defines the core of self-identity; (5) a surrogate self, based on third-person perspective information; (6) an extended self, including external objects or existences that are incorporated into the self; and, finally, (7) an emergent self, a property of the self-processes that give rise to the sense of a unified self. These are discussed in relation to self-awareness and their use in making sense of the experience of dementia.

Background: Assessments of functional connectivity of default mode network (DMN) and positive task-related networks (TRNs) using independent component analysis (ICA) may help describe long-term eff...

Apathy is a reduction in goal-directed activity in the cognitive, behavioral, emotional, or social domains of a patient’s life and occurs in one out of three patients after stroke. Despite this, apathy is clinically under-recognized and poorly understood. This overview provides a contemporary introduction to apathy in stroke for researchers and practitioners, covering topics including diagnosis, neurobiological mechanisms, associated consequences, and potential treatments for apathy. Apathy is often misdiagnosed as other post-stroke conditions such as depression. Accurate differential diagnosis of apathy, which manifests as reductions in initiative, and depression, which manifests as negative emotionality, is important as it informs prognosis. Research on the neurobiology of apathy suggests that there are few consistent associations between stroke lesion location and the development of apathy. These may be resolved by adopting a network neuroscience approach, which models apathy as a pathology arising from structural or functional damage to brain networks underlying motivated behavior. Importantly, networks can be affected by physiological changes related to stroke, including the acute infarct but also diaschisis and neurodegeneration. Aside from neurobiological changes, apathy is also associated with other negative outcome measures such as functional disability, cognitive impairment, and emotional distress, suggesting that apathy is indicative of a worse prognosis following stroke. Unfortunately, high-quality trials aimed at treating apathy are scarce. Antidepressants may have limited effects on apathy. Acetylcholine and dopamine pharmacotherapy, behavioral interventions, and transcranial magnetic stimulation may be more promising avenues for treatment.

Background: The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. Objective: We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers. Methods: We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement ‘I feel I am the same person that I have always been’. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of ‘living well’, and caregiver stress. Results: Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of ‘living well’. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress. Conclusion: A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to ‘live well’ with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.

Word learning is critical for the development of reading and language comprehension skills. Although previous studies have indicated that word learning is compromised in children with reading disability (RD) or developmental language disorder (DLD), it is less clear how word learning difficulties manifest in children with comorbid RD and DLD. Furthermore, it is unclear whether word learning deficits in RD or DLD include difficulties with offline consolidation of newly learned words. In the current study, we employed an artificial lexicon learning paradigm with an overnight design to investigate how typically developing (TD) children (N = 25), children with only RD (N = 93), and children with both RD and DLD (N = 34) learned and remembered a set of phonologically similar pseudowords. Results showed that compared to TD children, children with RD exhibited: (i) slower growth in discrimination accuracy for cohort item pairs sharing an onset (e.g. pibu‐pibo), but not for rhyming item pairs (e.g. pibu‐dibu); and (ii) lower discrimination accuracy for both cohort and rhyme item pairs on Day 2, even when accounting for differences in Day 1 learning. Moreover, children with comorbid RD and DLD showed learning and retention deficits that extended to unrelated item pairs that were phonologically dissimilar (e.g. pibu‐tupa), suggestive of broader impairments compared to children with only RD. These findings provide insights into the specific learning deficits underlying RD and DLD and motivate future research concerning how children use phonological similarity to guide the organization of new word knowledge., We employed an artificial lexicon learning paradigm with an overnight design to investigate how typically developing (TD) children, children with reading disability (RD), and children with both RD and developmental language disorder (DLD) learned and remembered a set of phonologically similar pseudowords. Compared to TD children, children with RD experienced difficulty learning and remembering phonologically similar items, whereas children with both RD and DLD experienced difficulty learning and remembering phonologically dissimilar items in addition to phonologically similar items. These findings suggest one of the specific deficits underlying RD and DLD is difficulty establishing robust phonological representations for newly learned words.

Statistical views of literacy development maintain that proficient reading requires the assimilation of myriad statistical regularities present in the writing system. Indeed, previous studies have tied statistical learning (SL) abilities to reading skills, establishing the existence of a link between the two. However, some issues are currently left unanswered, including questions regarding the underlying bases for these associations as well as the types of statistical regularities actually assimilated by developing readers. Here we present an alternative approach to study the role of SL in literacy development, focusing on individual differences among beginning readers. Instead of using an artificial task to estimate SL abilities, our approach identifies individual differences in children's reliance on statistical regularities as reflected by actual reading behavior. We specifically focus on individuals' reliance on regularities in the mapping between print and speech versus associations between print and meaning in a word naming task. We present data from 399 children, showing that those whose oral naming performance is impacted more by print-speech regularities and less by associations between print and meaning have better reading skills. These findings suggest that a key route by which SL mechanisms impact developing reading abilities is via their role in the assimilation of sub-lexical regularities between printed and spoken language -and more generally, in detecting regularities that are more reliable than others. We discuss the implications of our findings to both SL and reading theories.