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‘Living well’ is an important concept across national dementia strategies. Qualitative research has contributed to understanding of living well for people with dementia. Longitudinal qualitative approaches, though fewer, can explore potential changes in accounts of living well, psychological coping and adapting to dementia, and if/how people with dementia maintain continuity in their lives. This longitudinal qualitative study aims to gauge what is important for ‘living well’ with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later then thematically analysed. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintaining living well over time; individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising areas that had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well, including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to ‘live well’.
The partitioning of squared Eucliean distance between two vectors in M-dimensional space into the sum of squared lengths of vectors in mutually orthogonal subspaces is discussed and applications given to specific cluster analysis problems. Examples of how the partitioning idea can be used to help describe and interpret derived clusters, derive similarity measures for use in cluster analysis, and to design Monte Carlo studies with carefully specified types and magnitudes of differences between the underlying population mean vectors are presented. Most of the example applications presented in this paper involve the clustering of longitudinal data, but their use in cluster analysis need not be limited to this arena.
Children who suffer from brain insults (i.e., traumatic brain injury (TBI), chemotherapy and radiation treatment for brain tumors) are susceptible to late-emerging cognitive sequelae. Even with similar neurological risk variables, variability in long-term cognitive outcomes remains an area of investigation for researchers of acquired brain injury. Given the potential for genetic factors to influence response to chemoradiation, researchers have examined associations between germline, inherited, single nucleotide polymorphisms (SNPs), and neurocognitive outcomes for cancer survivors. Children who sustain an uncomplicated mild TBI generally recover without long-term neuropsychological consequences. However, TBI survivors have overlapping mechanism categories with cancer survivors through secondary injury variables that can be influenced by genomic variation (e.g., oxidative stress and neuroinflammation). Furthermore, the study of genomic vulnerability is limited in heterogenous groups of pediatric TBI survivors. This study aims to identify associations between genotype and long-term neurocognitive outcomes for acquired brain injury survivors by utilizing machine learning to uncover pathophysiological similarities and differences between groups.
Participants and Methods:
Fourteen brain tumor survivors, 139 traumatic brain injury survivors, and 63 healthy, age-matched controls completed the Letter N-back task to obtain performances on core neurocognitive skills (attention, working memory, and processing speed). Ten targeted genotypes were examined across five pathophysiological pathways (neurotransmission, oxidative stress, neuroinflammation, plasticity, growth and repair, and folate metabolism). Data were trained and tested utilizing three regression machine learning models. Mean estimated error and R2 were generated for each neurocognitive outcome. A feature importance score for models with positive variance was generated to determine how predictive a given SNP is for neurocognitive outcomes.
Results:
Genotype only accounted for a small amount of variance in cognitive outcomes when all clinical groups were combined. The mean absolute error for the best-fitting models from analyses where all groups were combined decreased when groups were examined separately; however, the differences in model R2 values were not significant. The relationship between brain tumor survivors and processing speed performance depended on genotype. Two SNPs had positive feature importance at the interaction level (rs58225473 and rs1801394). These SNPs are located on the CACNB2 and MTR genes and have functional consequences for neurotransmission and folate metabolism. Models of traumatic brain injury survivors did not explain positive variance and could not be examined for feature importance. Additionally, even when removing the only mechanism of action that should not be relevant for TBI survivors (folate metabolism polymorphisms), the TBI models still did not explain positive variance.
Conclusions:
Findings of the importance of two key SNPs on MTR and CACNB2 genes align with recent systematic reviews, which found associations between these polymorphisms and neuropsychological outcomes in more than one group or cohort of pediatric cancer survivors. Models for TBI survivors were limited by the heterogeneity of the group and ceiling effects on performance. An understanding of genetic vulnerabilities influenced by treatment and injury-related factors in acquired brain injury will inform our understanding of the developing and recovering childhood brain. The current study is an initial contribution to this goal and highlights the utility of machine learning methodology for future studies that examine the influence of genetic heterogeneity in pediatric acquired brain injury.
Adolescent and young adult survivors of pediatric brain tumors often live with long-term neuropsychological deficits, which have been found to be related to functional and structural brain changes related to the presence of the tumor itself as well as treatments such as radiation therapy. The importance of brain networks has become a central focus of research over recent decades across neurological populations. Graph theory is one way of analyzing network properties that can describe the integration, segregation, and other aspects of network organization. The existing literature using graph theory with survivors of brain tumor is small and inconsistent; therefore, more work is needed, particularly in survivors of pediatric brain tumors. The present study used graph theory to determine whether functional network properties in this population differ from healthy controls; whether graph metrics relate to core cognitive skills: attention, working memory, and processing speed; and whether they relate to a cumulative measure of neurological risk.
Participants and Methods:
31 survivors and 31 matched controls completed neuropsychological testing including measures of attention, working memory, and processing speed. They also underwent resting state functional magnetic resonance imaging. Resting state data were preprocessed and spatially constrained independent component analysis was completed to construct connectivity matrices. Finally, graph metrics were calculated utilizing an area under the curve method, including global efficiency, clustering coefficient, betweenness centrality, and small-worldness. Group differences and associations between graph metrics, cognitive outcomes, and neurological risk were analyzed using SPSS version 28.0.
Results:
Results revealed a significant difference such that brain tumor survivors exhibited less small-world properties in their functional brain networks. This was found to be related to working memory, such that less smallworldness in the network was related to poorer performance. There were no significant relationships with neurological risk, but there were nonsignificant correlations of small-moderate effect size such that lower global efficiency and clustering coefficient were associated with greater neurological risk. Comparisons to structural network analysis from a similar sample and additional post-hoc analyses are also discussed.
Conclusions:
These findings reveal that survivors of pediatric brain tumor indeed display significant differences in functional brain networks that are quantifiable by graph theory. It is also possible that, with further work, we might better understand how metrics such as smallworldness can be used to predict long-term cognitive outcomes and functional independence in adulthood.
The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.
Communities of color have faced disproportionate morbidity and mortality from COVID-19, coupled with historical underrepresentation in US clinical trials, creating challenges for equitable participation in developing and testing a safe and effective COVID-19 vaccine.
Methods:
To increase diversity, including racial and ethnic representation, in local Los Angeles County NIH-sponsored Phase 3 SARS-CoV-2 vaccine clinical trials, we used deliberative community engagement approaches to form a Community Consultant Panel (CCP) that partnered with trial research teams. Thirteen members were recruited, including expertise from essential workers, community-based and faith-based organizations, or leaders from racial and ethnic minority communities.
Results:
Working closely with local investigators for the vaccine studies, the CCP provided critical insight on best practices for community trust building, clinical trial participation, and reliable information dissemination regarding COVID-19 vaccines. Modifying recruitment, outreach, and trial protocols led to majority–minority participants (55%–78%) in each of the three vaccine clinical trials. CCP’s input led to cultural tailoring of recruitment materials, changes in recruitment messaging, and supportive services to improve trial accessibility and acceptability (transportation, protocols for cultural competency, and support linkages to care in case of an adverse event). Barriers to clinical trial participation unable to be resolved included childcare, requests for after-hours appointment availability, and mobile locations for trial visits.
Conclusion:
Using deliberative community engagement can provide critical and timely insight into the community-centered barriers to COVID-19 vaccine trial participation, including addressing social determinants of health, trust, clinical trial literacy, structural barriers, and identifying trusted messenger and reliable sources of information.
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.
Sustainable development recognizes that the environment is the foundation for all human well-being.1 In the United States, environmental justice, environmental racism, and environmental equity are all terms that have been used to describe the social movement uniting low-income, African-American, Native American, Asian Pacific Islander, and Latino communities (environmental justice communities) in challenging the distribution of environmental burdens and benefits. Through the efforts of the environmental justice movement, the USA has been forced to address its history of racism and conquest – a history so toxic that it has left indelible marks on both the environment and people. That history is not over yet.
Antibiotics are among the most common medications prescribed in nursing homes. The annual prevalence of antibiotic use in residents of nursing homes ranges from 47% to 79%, and more than half of antibiotic courses initiated in nursing-home settings are unnecessary or prescribed inappropriately (wrong drug, dose, or duration). Inappropriate antibiotic use is associated with a variety of negative consequences including Clostridioides difficile infection (CDI), adverse drug effects, drug–drug interactions, and antimicrobial resistance. In response to this problem, public health authorities have called for efforts to improve the quality of antibiotic prescribing in nursing homes.
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.
To investigate the nature of the relationship between cognitive function, mood state, and functionality in predicting awareness in a non-clinically depressed sample of participants with mild to moderate Alzheimer’s disease (AD) in Brazil.
Methods:
People with AD (PwAD) aged 60 years or older were recruited from an outpatient unit at the Center of AD of the Federal University of Rio de Janeiro, Brazil. Measures of awareness of condition (Assessment Scale of the Psychosocial Impact of the Diagnosis of Dementia), cognitive function (Mini-Mental State Examination), mood state (Cornell Scale for Depression in Dementia), and functionality (Pfeffer Functional Activities Questionnaire) were applied to 264 people with mild to moderate AD and their caregivers. Hypotheses were tested statistically using SEM approach. Three competing models were compared.
Results:
The first model, in which the influence of mood state and cognitive function on awareness was mediated by functionality, showed a very good fit to the data and a medium effect size. The competing models, in which the mediating variables were mood state and cognitive function, respectively, only showed poor model fit.
Conclusion:
Our model supports the notion that the relationship between different factors and awareness in AD is mediated by functionality and not by depressive mood state or cognitive level. The proposed direct and indirect effects on awareness are discussed, as well as the missing direct influence of mood state on awareness. The understanding of awareness in dementia is crucial and our model gives one possible explanation of its underlying structure in AD.
Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.
Objectives: In addition to neuropsychological difficulties, patients with cerebral small vessel disease (SVD) can have reduced activities of daily living and a poorer quality of life compared to healthy adults. The Brief Memory and Executive Test (BMET), is a cognitive screening tool designed to be sensitive to the neuropsychological profile of patients with SVD. While the BMET is sensitive to the cognitive consequences of SVD, it is unclear how well scores on this measure relate to functional outcomes. The aims of this study are to investigate the relationship between scores on the BMET and functional outcomes (activities of daily living and quality of life) in SVD, and to compare this with other commonly used cognitive screening tools. Methods: This study included 184 participants with SVD (mean age=63.2; SD=9.9) and 299 healthy controls (mean age=62.4; SD=13.8) who were tested using the BMET, Montreal Cognitive Assessment (MoCA), Mini-Mental State Examination (MMSE), Stroke Specific - Quality of Life Scale (SS-QoL), Geriatric Depression Scale (GDS), and measures of both instrumental activities of daily living (IADL) and basic activities of daily living (BADL). Results: After controlling for covariates the scores on the BMET, but not the MoCA or MMSE, were significantly related to poorer IADL and quality of life in the SVD group. In addition to the BMET scores, symptoms of depression were found to be significant associated with functional outcome. Conclusion: These results support the clinical utility of using of the BMET, in combination with a standardized depression questionnaire, during the early assessment of patients with SVD. (JINS, 2016, 22, 1–9)
Objectives: The cerebellum (CB) is known for its role in supporting processing speed (PS) and cognitive efficiencies. The CB often sustains damage from treatment and resection in pediatric patients with posterior fossa tumors. Limited research suggests that CB atrophy may be associated with the radiation treatment experienced during childhood. The purpose of the study was to measure cerebellar atrophy to determine its neurobehavioral correlates. Methods: Brain magnetic resonance images were collected from 25 adult survivors of CB tumors and age- and gender-matched controls (Mage=24 years (SD=5), 52% female). Average age at diagnosis was 9 years (SD=5) and average time since diagnosis was 15 years (SD=5). PS was measured by the Symbol Digit Modality Test. To quantify atrophy, an objective formula was developed based on prior literature, in which Atrophy=[(CB White+CB Gray Volume)/Intracranial Vault (ICV)]controls-[(CB White+CB Gray+Lesion Size Volume)/ICV]survivors. Results: Regression analyses found that the interaction term (age at diagnosis*radiation) predicts CB atrophy; regression equations included the Neurological Predictor Scale, lesion size, atrophy, and the interaction term and accounted for 33% of the variance in oral PS and 48% of the variance in written PS. Both interactions suggest that individuals with smaller CB lesion size but a greater degree of CB atrophy had slower PS, whereas individuals with a larger CB lesion size and less CB atrophy were less affected. Conclusion: The results of the current study suggest that young age at diagnosis and radiation is associated with CB atrophy, which interacts with lesion size to impact both written and oral PS. (JINS, 2016, 23, 1–11)
Patterns of verbal fluency deficits have been explored across different neurodegenerative disorders. This study sought to investigate the specific pattern of verbal fluency performance in cerebral small vessel disease (SVD), which is the most common cause of vascular cognitive impairment, and compare this with Alzheimer's disease (AD). Participants with SVD (n = 45), AD (n = 24) and healthy controls (n = 80) completed assessments of semantic and phonemic fluency. Mixed-model analyses of covariance were used to compare performance on the different fluency tasks between the groups, and a discriminant function analysis was conducted to examine group differentiation. The SVD group was impaired in both fluency tasks when compared to the controls. In contrast, the AD group displayed impairment in semantic fluency only. Discriminant function analysis revealed that fluency scores correctly classified 80% of SVD patients and 92% of AD patients. The pattern of performance observed in the SVD group may reflect deficits in executive function and processing speed impacting equivalently on semantic and phonemic fluency. The differences between the SVD and AD groups highlighted in this study may be useful for distinguishing between these conditions. (JINS, 2014, 20, 1–9)
This review explores the relationships between depression, apathy, and anosognosia in Alzheimer's disease. Depressed mood is found to be associated with less anosognosia, while greater apathy is associated with more anosognosia, and the contrasting reasons for these associations are discussed. The review also describes recent research findings indicating a dissociation between impaired awareness of condition/deficit and preserved emotional reactivity in response to illness-related material or the experience of failure in tests. We conclude by pointing to future directions for this area of research and clinical implications. (JINS, 2014, 20, 2–7)