A narrative review of community-based dementia care in India: experiences, challenges, and policy initiatives.

PURPOSE OF REVIEW: India is facing a significant increase in the aging population who are at risk for dementia. This review evaluates recent literature on community-based care, focusing on caregiver experiences, challenges and policy initiatives. RECENT FINDINGS: Dementia care in India is traditionally provided by family members who take on the role of caregivers. Studies on caregiver experiences have reflected high caregiving burden and related impact on their mental health. During the pandemic, caregivers experienced several unprecedented challenges in providing care, emphasizing the need for more research on community-based dementia care across the country. Telehealth and online caregiver training were identified as viable alternatives to support community dementia care. However, it may not be a feasible mode of delivery suitable across the Indian context, underscoring the need for culturally relevant and acceptable interventions. India is currently undertaking concerted policy efforts for dementia care through multiple initiatives like the National Program for Healthcare of the Elderly, the Mental Healthcare Act, and initiatives like the Atal Vayo Abhyuday Yojna. These initiatives aim to address the healthcare requirements of the elderly; nevertheless, a comprehensive evaluation of their impact is yet to be discerned. SUMMARY: There is a need for comprehensive research, to inform evidence-based policy and improve dementia care systems in India. Addressing gaps in existing dementia care capacities and healthcare initiatives, along with tailoring interventions to India's diverse contexts are critical for effective community care for dementia.

Brain health and value diversity: A new implementation field for values-based practice?

Brain health has recently emerged as an overarching concept encompassing cognitive, sensory, social-emotional, behavioural and motor aspects of brain functioning, enabling individuals to achieve their potential for both health and wellbeing over their life course, independent of the presence or absence of disease.1 It is contingent on a continuous, complex interplay between interconnected determinants related to physical health, healthy environments, safety and security, learning and social connection, and access to quality services. Even though responsibility for optimizing brain health can be taken at an individual level, brain health is in fact heavily influenced by determinants far beyond the control of individuals and their families. For instance, protection from abuse and maltreatment or equitable access to health services depend on interacting social, financial, and political factors that can often only be minimally influenced by individual or small group initiatives.2,3 In addition, the voice of many people, including the very young, the very old, the sick, the disadvantaged, and those who live in poverty, may not be sufficiently influential, even though the decision-making process crucially affects the brain health and quality of life for these individuals. The breadth of determinants of brain health makes brain health a terrain that is justifiably shaped by a plethora of stakeholders with highly diverse values and hence potentially conflicting interests and albeit different degrees of power. Consequently, decision-making in such contexts embodies a thorny process that may render the negligence of the values, viewpoints, and perspectives of those directly involved in a given decision, particularly when the individual capacity to advocate for oneself and the willingness of society and governments to act on behalf of their citizens, are low. Values-based practice (VBP) is a toolkit for balancing interests, wishes, and values in contexts characterized by diverse values, which may be valuable in decision-making related to brain health.4 The implementation of this toolkit in different fields of healthcare (e.g., occupational therapy, orthopedics, primary care, psychiatry, psychology, radiotherapy) has been proposed, and training materials for healthcare professionals have been developed.5 VBP aims to include the differences in values, viewpoints, and perspectives of those directly concerned with a given decision so that communication and shared decision-making are facilitated. Based on the legacy of the Popperian open society,5 VBP treats values in the same way that democracy treats ideas and human voices. Hence, this decision-making toolkit is neither restricted to ethical codes nor prioritizes one value over others. It also does not endorse certain values while excluding others, provided that the values in play are compatible with legal, regulatory, and bioethical frameworks. The emphasis of VBP is on good process rather than predetermined 'correct' outcomes.6,7 Respect for differences between stakeholders results in the creation of a culture of mutual responsibility and in building up a positive relationship between all those concerned, so that everyone feels a sense of ownership of the decision made.4,6 Of note, according to VBP, the perspective of the health service user or of the individuals or community seeking to protect their brain health is the ideal starting point for any decision. This approach minimizes the negligence of the views, needs, values, competencies, resources, and aspirations of those trying to optimize their brain health in contexts where powerful socioeconomic and further interests may be at stake. The 'good process' of VBP is safeguarded by ten principles.4 Four of them pertain to clinical skills and practice - awareness raising regarding the involvement of values in a given decision-making process; use of a clear reasoning strategy to explore value diversity; knowledge about the values and facts that may be relevant to different contexts; and good communication skills. Two further principles underscore the importance of person-centred and multidisciplinary health service delivery. Other principles focus on the fact that all decisions are based on both values and facts, where the former become noticeable particularly when they are diverse or conflicting, especially in environments where variable choices are at the disposal of service users. The last principle of VBP is based on partnership in decision-making, including both service users and providers. In conclusion, VBP may become a valuable tool for making balanced decisions in the broad terrain of brain health. Its protective focus on the perspectives of service users and its democratic character may pave the way towards achieving equity in and optimization of brain health.

Using mobile health technology to assess childhood autism in low-resource community settings in India: An innovation to address the detection gap.

LAY ABSTRACT: Autism is diagnosed by highly trained professionals- but most autistic people live in parts of the world that harbour few or no such autism specialists and little autism awareness. So many autistic people go undiagnosed, misdiagnosed, and misunderstood. We designed an app (START) to identify autism and related conditions in such places, in an attempt to address this global gap in access to specialists. START uses computerised games and activities for children and a questionnaire for parents to measure social, sensory, and motor skills. To check whether START can flag undiagnosed children likely to have neurodevelopmental conditions, we tested START with children whose diagnoses already were known: Non-specialist health workers with just a high-school education took START to family homes in poor neighbourhoods of Delhi, India to work with 131 two-to-seven-year-olds. Differences between typically and atypically developing children were highlighted in all three types of skills that START assesses: children with neurodevelopmental conditions preferred looking at geometric patterns rather than social scenes, were fascinated by predictable, repetitive sensory stimuli, and had more trouble with precise hand movements. Parents' responses to surveys further distinguished autistic from non-autistic children. An artificial-intelligence technique combining all these measures demonstrated that START can fairly accurately flag atypically developing children. Health workers and families endorsed START as attractive to most children, understandable to health workers, and adaptable within sometimes chaotic home and family environments. This study provides a proof of principle for START in digital screening of autism and related conditions in community settings.

Attention control in autism: Eye-tracking findings from pre-school children in a low- and middle-income country setting.

LAY ABSTRACT: The development of cognitive processes, such as attention control and learning, has been suggested to be altered in children with a diagnosis of autism spectrum disorder. However, nearly all of our understanding of the development of these cognitive processes comes from studies with school-aged or older children in high-income countries, and from research conducted in a controlled laboratory environment, thereby restricting the potential generalisability of results and away from the majority of the world's population. We need to expand our research to investigate abilities beyond these limited settings. We address shortcomings in the literature by (1) studying attention control and learning in an understudied population of children in a low- and middle-income country setting in India, (2) focusing research on a critical younger age group of children and (3) using portable eye-tracking technology that can be taken into communities and healthcare settings to increase the accessibility of research in hard-to-reach populations. Our results provide novel evidence on differences in attention control and learning responses in groups of children with and without a diagnosis of autism spectrum disorder. We show that learning responses in children that we assessed through a portable eye-tracking task, called the 'antisaccade task', may be specific to autism. This suggests that the methods we use may have the potential to identify and assess autism-specific traits across development, and be used in research in low-resource settings.

Hope for brain health: impacting the life course and society.

Hope is a cognitive process by which an individual can identify their personal goals and develop actionable steps to achieve results. It has the potential to positively impact people's lives by building resilience, and can be meaningfully experienced at both the individual and group level. Despite this significance, there are sizable gaps in our understanding of the neurobiology of hope. In this perspective paper, the authors discuss why further research is needed on hope and its potency to be harnessed in society as a "tool" to promote brain health across healthy and patient populations. Avenues for future research in hope and the brain are proposed. The authors conclude by identifying strategies for the possible applications of hope in brain health promotion within the areas of technology, arts, media, and education.

Cognitive Enhancement and Social Mobility: Skepticism from India.

Cognitive enhancement (CE) covers a broad spectrum of methods, including behavioral techniques, nootropic drugs, and neuromodulation interventions. However, research on their use in children has almost exclusively been carried out in high-income countries with limited understanding of how experts working with children view their use in low- and middle- income countries (LMICs). This study examines perceptions on cognitive enhancement, their techniques, neuroethical issues about their use from an LMICs perspective.Seven Indian experts were purposively sampled for their expertise in bioethics, child development and child education. In-depth interviews were conducted using a semi-structured topic guide to examine (1) understanding of CE, (2) which approaches were viewed as cognitive enhancers, (3) attitudes toward different CE techniques and (4) neuroethical issues related to CE use within the Indian context. All interviews were audio recorded and transcribed before thematic analysis.Findings indicate Indian experts view cognitive enhancement as a holistic positive impact on overall functioning and well-being, rather than improvement in specific cognitive abilities. Exogenous agents, and neuromodulation were viewed with skepticism, whereas behavioral approaches were viewed more favorably. Neuroethical concerns included equitable access to CE, limited scientific evidence and over-reliance on technology to address societal problems. This highlights the need for more contextually relevant neuroethics research in LMICs.

The neuroscience of respect: insights from cross-cultural perspectives.

Cultural values such as respect influence cognition, emotion, and behavior by modulating brain functioning. This mini-review discusses the cultural differences of respect as an essential human value, and the neural underpinnings accompanying them. Although neuroscientific studies are limited, we outline potential brain structures and networks that contribute to respect and use clinical examples to illustrate how behavior changes when these neural systems fail. A better understanding of the neuroanatomical basis of respect and its neural manifestations across cultures will help to advance current conceptualizations of the biology of human values.

Digital tools for direct assessment of autism risk during early childhood: A systematic review.

LAY ABSTRACT: The challenge of finding autistic children, and finding them early enough to make a difference for them and their families, becomes all the greater in parts of the world where human and material resources are in short supply. Poverty of resources delays interventions, translating into a poverty of outcomes. Digital tools carry potential to lessen this delay because they can be administered by non-specialists in children's homes, schools or other everyday environments, they can measure a wide range of autistic behaviours objectively and they can automate analysis without requiring an expert in computers or statistics. This literature review aimed to identify and describe digital tools for screening children who may be at risk for autism. These tools are predominantly at the 'proof-of-concept' stage. Both portable (laptops, mobile phones, smart toys) and fixed (desktop computers, virtual-reality platforms) technologies are used to present computerised games, or to record children's behaviours or speech. Computerised analysis of children's interactions with these technologies differentiates children with and without autism, with promising results. Tasks assessing social responses and hand and body movements are the most reliable in distinguishing autistic from typically developing children. Such digital tools hold immense potential for early identification of autism spectrum disorder risk at a large scale. Next steps should be to further validate these tools and to evaluate their applicability in a variety of settings. Crucially, stakeholders from underserved communities globally must be involved in this research, lest it fail to capture the issues that these stakeholders are facing.

The association of a novel digital tool for assessment of early childhood cognitive development, 'DEvelopmental assessment on an E-Platform (DEEP)', with growth in rural India: A proof of concept study.

BACKGROUND: There is an urgent need to fill the gap of scalable cognitive assessment tools for preschool children to enable identification of children at-risk of sub-optimal development and to support their timely referral into interventions. We present the associations between growth in early childhood, a well-established marker of cognitive development, and scores on a novel digital cognitive assessment tool called DEvelopmental Assessment on an E-Platform (DEEP) on a sample of 3-year old pre-schoolers from a rural region in north India. METHODS: Between February 2018 and March 2019, 1359 children from the Sustainable Programme Incorporating Nutrition and Games (SPRING) programme were followed up at 3-years age and data on DEEP, anthropometry and a clinical developmental assessment, the Bayley's Scale of Infant and Toddler Development, 3rd edition (BSID-III) was collected. DEEP data from 200 children was used to train a machine learning algorithm to predict their score on the cognitive domain of BSID-III. The DEEP score of the remaining 1159 children was then predicted using this algorithm to examine the cross-sectional and prospective association of growth with the DEEP score. FINDINGS: The magnitude of the concurrent positive association between height-for-age and cognitive z-scores in 3-year olds was similar when cognition was measured by BSID-III (0.20 standard deviations increase for every unit change in specifically age-adjusted height (HAZ), 95% CI = 0.06-0.35) and DEEP (0.26 CI, 0.11-0.41). A similar positive prospective relationship was found between growth at 18 (0.21 CI, 0.17-0.26) and 12-months (0.18 CI, 0.13-0.23) and DEEP score measured at 3-years. Additionally, the relationship between growth and cognitive development was found to be dependant on socioeconomic status (SES). INTERPRETATION: In this study, we suggest the utility of DEEP, a scalable, digital cognitive assessment tool, to measure cognition in preschool children. Further validation in different and larger datasets is necessary to confirm our findings. FUNDING: The SPRING Programme was funded through a Wellcome Trust programme grant and the follow-up study by the Corporate Social Responsibility initiative grant from Madura Microfinance Ltd.

Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low- and middle-income countries: a review of reviews.

BACKGROUND: Autism presents with similar prevalence and core impairments in diverse populations. We conducted a scoping review of reviews to determine key barriers and innovative strategies which can contribute to attaining universal health coverage (UHC), from early detection to effective interventions for autism in low- and middle-income countries (LAMIC). METHODS: A systematic literature search of review articles was conducted. Reviews relevant to the study research question were included if they incorporated papers from LAMIC and focused on children (

Proof of Concept of a Gamified DEvelopmental Assessment on an E-Platform (DEEP) Tool to Measure Cognitive Development in Rural Indian Preschool Children.

Over 250 million children in developing countries are at risk of not achieving their developmental potential, and unlikely to receive timely interventions because existing developmental assessments that help identify children who are faltering are prohibitive for use in low resource contexts. To bridge this "detection gap," we developed a tablet-based, gamified cognitive assessment tool named DEvelopmental assessment on an E-Platform (DEEP), which is feasible for delivery by non-specialists in rural Indian households and acceptable to all end-users. Here we provide proof-of-concept of using a supervised machine learning (ML) approach benchmarked to the Bayley's Scale of Infant and Toddler Development, 3rd Edition (BSID-III) cognitive scale, to predict a child's cognitive development using metrics derived from gameplay on DEEP. Two-hundred children aged 34-40 months recruited from rural Haryana, India were concurrently assessed using DEEP and BSID-III. Seventy percent of the sample was used for training the ML algorithms using a 10-fold cross validation approach and ensemble modeling, while 30% was assigned to the "test" dataset to evaluate the algorithm's accuracy on novel data. Of the 522 features that computationally described children's performance on DEEP, 31 features which together represented all nine games of DEEP were selected in the final model. The predicted DEEP scores were in good agreement (ICC [2,1] > 0.6) and positively correlated (Pearson's r = 0.67) with BSID-cognitive scores, and model performance metrics were highly comparable between the training and test datasets. Importantly, the mean absolute prediction error was less than three points (<10% error) on a possible range of 31 points on the BSID-cognitive scale in both the training and test datasets. Leveraging the power of ML which allows iterative improvements as more diverse data become available for training, DEEP, pending further validation, holds promise to serve as an acceptable and feasible cognitive assessment tool to bridge the detection gap and support optimum child development.

Development, feasibility and acceptability of a gamified cognitive DEvelopmental assessment on an E-Platform (DEEP) in rural Indian pre-schoolers - a pilot study.

Background: Assessment of cognitive development is essential to identify children with faltering developmental attainment and monitor the impact of interventions. A key barrier to achieving these goals is the lack of standardized, scalable tools to assess cognitive abilities. Objective: This study aimed to develop a tablet-based gamified assessment of cognitive abilities of 3-year-old children which can be administered by non-specialist field workers. Methods: Workshops among domain experts, literature search for established and gamified paradigms of cognitive assessments and rapid review of mobile games for 3-year-old children was done to conceptualize games for this study. Formative household visits (N = 20) informed the design and content of the games. A cross-sectional pilot study (N = 100) was done to assess feasibility of the tool and check if increasing levels of difficulty and the expected variability between children were evident in game metrics. In-depth interviews (N = 9) were conducted with mothers of participating children to assess its acceptability. Results: Six cognitive domains were identified as being integral to learning - divided attention, response inhibition, reasoning, visual form perception and integration and memory. A narrative, musical soundtrack and positive reinforcement were incorporated into the tool to enhance participant engagement. Child performance determined level timers and difficulty levels in each game. Pilot data indicate that children differ in their performance profile on the tool as measured by the number of game levels played and their accuracy and completion time indicating that it might be possible to differentiate children based on these metrics. Qualitative data suggest high levels of acceptability of the tool amongst participants. Conclusions: A DEvelopmental assessment on an E-Platform (DEEP) has been created comprising distinct games woven into a narrative, which assess six cognitive domains, and shows high levels of acceptability and generates metrics which may be used for validation against gold standard cognitive assessments.

Cognitive changes in asymptomatic drug-naïve human immunodeficiency virus type 1 clade C infection.

Asymptomatic human immunodeficiency virus (HIV) infection is associated with impaired cognitive functioning in both clade B and C infections. The nature of cognitive change longitudinally has not been studied in asymptomatic clade C infection. The present study evaluated changes in neuropsychological functioning over a 2(1/2)-year period in a cohort of HIV-1 clade C-infected asymptomatic individuals from South India. Participants with CD4 counts below 250 were started on highly active antiretroviral therapy (HAART) as per National AIDS Control Organisation NACO guidelines and hence excluded. The sample consisted of 68 patients (30 men and 38 women), with a mean age of 29.4 years (SD=5.6 years) and a mean education of 10.0 years (SD=2.7 years). A comprehensive neuropsychological assessment with 12 tests yielding 21 variables was used to examine cognitive functioning at baseline and subsequently at 6-monthly intervals for five follow-ups. Shift in CD4 and viral load categories measured by the McNemar's test indicated disease progression. Latent growth curve (LGC) modeling assessed the nature of change in cognition over the 2(1/2)-year study period. Ten variables representing attention, executive functions, and long-term memory fit the LGC model. Excepting visual working memory, the slope was nonsignificant for nine variables, indicating absence of deterioration in cognition over a 2(1/2)-year period. However, CD4 and viral load levels worsened, indicating disease progression. Asymptomatic individuals with HIV-1 clade C infection do not show any significant decline on individual neuropsychological functions over 2(1/2) years despite disease progression, as evidenced by immune suppression and viral loads.