Online Cognitive Stimulation Therapy for Dementia in Brazil and India: Acceptability, Feasibility, and Lessons for Implementation.

BACKGROUND: Cognitive stimulation therapy (CST) is an evidence-based, group psychosocial intervention for people with dementia, and it has a positive impact on cognition and quality of life. CST has been culturally adapted for use globally. It was developed as a face-to-face intervention but has recently been adapted for online delivery. OBJECTIVE: In this study, we aimed to explore the feasibility and acceptability of online or virtual CST (vCST) delivery in India and Brazil, emphasizing barriers and facilitators to implementation. METHODS: A single-group, multisite, mixed methods, feasibility study was conducted, with nested qualitative interviews. Primary feasibility outcomes were recruitment rate, attendance, attrition, acceptability, and outcome measure completion. Exploratory pre- and postintervention measures, including cognition and quality of life, were assessed. Qualitative interviews were conducted with people with dementia, family caregivers, and group and organizational leaders following intervention delivery, and the data were analyzed using the Consolidated Framework for Implementation Research. RESULTS: A total of 17 vCST group sessions with 59 participants were conducted for 7 weeks, with 53% (31/59) of participants attending all 14 sessions. Attrition rate was 7% (4/59), and outcome measure completion rate at follow-up was 68% (40/59). Interviews took place with 36 stakeholders. vCST was acceptable to participants and group leaders and enabled vital access to services during pandemic restrictions. While online services broadened geographic access, challenges emerged concerning inadequate computer literacy, poor technology access, and establishing interpersonal connections online. Exploratory, uncontrolled analyses indicated positive trends in quality of life but negative trends in cognition and activities of daily living, but these results were not statistically significant. CONCLUSIONS: vCST demonstrated feasibility and acceptability, serving as a crucial resource during the pandemic but raised challenges related to technology access, computer literacy, and long-term implementation. The study highlights the potential of vCST while emphasizing ongoing development and solutions to address implementation challenges.

Indian Psychiatric Society multicentre study: Diagnostic patterns, comorbidity and prescription practices for patients with Dementia.

Background: There are more than 5 million people with dementia in India. Multicentre studies looking at details of treatment for people with dementia In India are lacking. Clinical audit is a quality improvement process which aims to systematically assess, evaluate, and improve patient care. Evaluating current practice is the key to a clinical audit cycle. Aim: This study aimed to assess the diagnostic patterns and prescribing practices of psychiatrists for patients with dementia in India. Method: A retrospective case file study was conducted across several centers in India. Results: Information from the case records of 586 patients with dementia was obtained. Mean age of the patients was 71.14 years (standard deviation = 9.42). Three hundred twenty one (54.8%) were men. Alzheimer's disease (349; 59.6%) was the most frequent diagnosis followed by vascular dementia (117; 20%). Three hundred fifty five (60.6%) patients had medical disorders and 47.4% patients were taking medications for their medical conditions. Eighty one (69.2%) patients with vascular dementia had cardiovascular problems. Majority of the patients (524; 89.4%) were on medications for dementia. Most frequently prescribed treatment was Donepezil (230; 39.2%) followed by Donepezil-Memantine combination (225; 38.4%). Overall, 380 (64.8%) patients were on antipsychotics. Quetiapine (213, 36.3%) was the most frequently used antipsychotic. Overall, 113 (19.3%) patients were on antidepressants, 80 (13.7%) patients were on sedatives/hypnotics, and 16 (2.7%) patients were on mood stabilizers. Three hundred nineteen (55.4%) patients and caregivers of 374 (65%) patients were receiving psychosocial interventions. Conclusions: Diagnostic and prescription patterns in dementia which emerged from this study are comparable to other studies both nationally and internationally. Comparing current practices at individual and national levels against accepted guidelines, obtaining feedback, identifying gaps and instituting remedial measures help to improve the standard of care provided.

Delivering Cognitive Stimulation Therapy (CST) Virtually: Developing and Field-Testing a New Framework.

PURPOSE: This feasibility and pilot study aimed to develop and field-test a 14-session virtual Cognitive Stimulation Therapy (vCST) programme for people living with dementia, developed as a result of services moving online during the COVID-19 pandemic. METHODS: The vCST protocol was developed using the existing group CST manual, through stakeholder consultation with people living with dementia, caregivers, CST group facilitators and dementia service managers. This protocol was then field-tested with 10 groups of people living with dementia in the Brazil, China (Hong Kong), India, Ireland and the UK, and feedback on the protocol was gathered from 14 facilitators. RESULTS: Field testing in five countries indicated acceptability to group facilitators and participants. Feedback from these groups was used to refine the developed protocol. The final vCST protocol is proposed, including session materials for delivery of CST over videoconferencing and a framework for offering CST virtually in global settings. CONCLUSION: vCST is a feasible online intervention for many people living with dementia. We recommend that it is offered to those unable to access traditional in-person CST for health reasons, lack of transport or COVID-19 restrictions. Further research is needed to explore if participant outcomes are comparable to in-person CST groups.

Development and acceptability of a brief, evidence-based Dementia Awareness for Caregivers course in low- and middle-income countries.

BACKGROUND: Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. METHODS: An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. FINDINGS: The DAC-International was developed, comprising three modules: 'What is dementia?'; 'Positive engagement' and 'Caring for someone with dementia'. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country (n = 85), which indicated acceptability to participants. CONCLUSIONS: The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses.

Acceptability of Social Robots and Adaptation of Hybrid-Face Robot for Dementia Care in India: A Qualitative Study.

OBJECTIVES: This study aims to understand the acceptability of social robots and the adaptation of the Hybrid-Face Robot for dementia care in India. METHODS: We conducted a focus group discussion and in-depth interviews with persons with dementia (PwD), their caregivers, professionals in the field of dementia, and technical experts in robotics to collect qualitative data. RESULTS: This study explored the following themes: Acceptability of Robots in Dementia Care in India, Adaptation of Hybrid-Face Robot and Future of Robots in Dementia Care. Caregivers and PwD were open to the idea of social robot use in dementia care; caregivers perceived it to help with the challenges of caregiving and positively viewed a future with robots. DISCUSSION: This study is the first of its kind to explore the use of social robots in dementia care in India by highlighting user needs and requirements that determine acceptability and guiding adaptation.

Cultural adaptation of Alzheimer's disease assessment scale-cognitive subscale for use in India and validation of the Tamil version for South Indian population.

OBJECTIVE: Currently no standardized tools are available in the Indian languages to assess changes in cognition. Our objectives are to culturally adapt the Alzheimer's disease Assessment Scale-Cognitive Subscale (ADAS-Cog) for use in India and to validate the Tamil version in an urban Tamil-speaking older adult population. METHODS: Two panels of key stakeholders and a series of qualitative interviews informed the cultural and linguistic adaptation of the ADAS-Cog-Tamil. Issues related to levels of literacy were considered during the adaptation. Validation of the ADAS-Cog-Tamil was completed with 107 participants - 54 cases with a confirmed diagnosis of mild-moderate dementia, and 53 age, gender and education matched controls. Concurrent validity was examined with the Vellore Screening Instrument for Dementia (VSID) in Tamil. Internal consistency using Cronbach's alpha, sensitivity and specificity data using the Area under the Receiver Operating Characteristics (AUROC) curve values were computed. Inter-rater reliability was established in a subsample. RESULTS: The ADAS-Cog-Tamil shows good internal consistency (α = 0.91), inter-rater reliability and concurrent validity (with VSID-Patient version: r = -0.84 and with VSID-Caregiver version: r = -0.79). A cut-off score of 13, has a specificity of 89% and sensitivity of 90% for the diagnosis of dementia. CONCLUSION: ADAS-Cog-Tamil, derived from a rigorous, replicable linguistic and cultural adaptation process involving service users and experts, shows good psychometric properties despite the limitations of the study. It shows potential for use in clinical settings with urban Tamil speaking populations. The English version of the tool derived from the cultural adaptation process could be used for further linguistic adaptation across South Asia.

Implementation of first episode psychosis intervention in India - A case study in a low-and middle-income country.

First Episode Psychosis (FEP) is a serious mental illness affecting adolescents and young persons. While many effective interventions are available, there has not been much research to understand the implementation of such interventions in India and other low- and middle-income countries (LMIC). We studied the implementation of an FEP intervention program in a specialist mental health facility in Chennai, India, using a well-established framework for doing so, the Consolidated Framework for Implementation Research (CFIR). We conducted 27 in-depth interviews with the service users (15 persons with FEP and 12 family caregivers of persons with FEP). We also conducted a focus group discussion with 8 service providers and in-depth interviews with 7 other service providers including those in the service management. A thematic analysis approach was used to identify emerging themes. First, we found CFIR effectively accommodated implementation challenges evident in LMICs; that is, it is transferable to LMIC settings. Second, we highlight barriers to implementation that include cost, limited human resources, cultural and professional hierarchy, divergence from evidence-based guidelines, and lack of awareness and stigma in the wider community. Third, we highlight facilitators for implementation such as, leadership engagement, the need for change that was recognized within the service, cosmopolitan perspectives derived from clinicians' local and international collaborative experiences and expertise, compatibility of the intervention with the existing systems within the organization, accommodating the needs of the service users, and rapport developed by the service with the service users. Fourth, we propose a model of service delivery incorporating a task-sharing approach for first episode psychosis in resource restricted settings based on the feedback from the stakeholders.

Effect of mode of administration on Edinburgh Postnatal Depression Scale in the South Indian population: A comparative study on self-administered and interviewer-administered scores.

BACKGROUND: Edinburgh Postnatal Depression Scale (EPDS) is a validated screening tool widely used to assess perinatal depression (PND). However, due to stigma associated with PND, respondents could answer sensitive questions differently depending on the mode of administration, especially in culturally and linguistically diverse country like India. The present study explored longitudinal differences in EPDS scores between self-administered and interviewer-administered modes. METHODS: 177 women from rural South India were administered EPDS, self-administration followed by interviewer-administered for four visits, twice each during prenatal and postnatal visits. EPDS scores were compared between the two modes descriptively, graphically and by repeated mixed measure models. Classification of antenatal depression (AD), postnatal depression (PD) and PND based on the two modes were compared by McNemar Chi-square test. Clinical and psychosocial characteristics were examined to identify factors associated with differences in the scoring modes. Concordance rates and Goodman Kruskal's Gamma coefficients were measured for individual EPDS items. RESULTS: Longitudinal EPDS scores and rates of AD, PD and PND were significantly higher in self-administered mode. Recent adverse life events were the only factor observed to be significantly associated with the differences between the two modes. Rank correlation and concordance rates suggested stronger association for EPDS items relating to anhedonia subscale and moderate/weaker association for EPDS items relating to anxiety/depression subscales. CONCLUSION: Our study findings suggest that the effect of mode of administration should be taken into account while using PND screening tools such as EPDS, especially in countries such as India with higher levels of illiteracy.

Determining Association Between Cognitive Function and Oral Health Status among Rural Community Dwelling Geriatrics.

OBJECTIVE: Numerous prospective studies worldwide investigated the association between oral health status and dementia or cognitive decline. No clear agreement has emerged on the association. This study aimed to determine the association of cognitive function and oral health status among community dwelling geriatrics in rural South India. MATERIALS AND METHODS: A cross-sectional study was conducted among community dwelling geriatrics in rural South India by recruiting 211 individuals aged above 60 years. Their cognitive function was assessed using pre-validated community screening instrument for dementia (CSI-D) which has informant and cognitive scale. The data on cognitive function was collected by community health workers in electronic version (Web app). Their oral health status was assessed by World Health Organization (WHO) oral health assessment form in electronic version (Web app). RESULTS: From the logistic regression analysis, it was observed that cognitive impairment showed an association with 1.6- and 1.9-times risk for root caries and a greater number of missing teeth (P ≤ 0.05). No association of other oral health parameters such as gingivitis, periodontitis, dental erosion, and dental trauma with cognitive impairment exhibited. CONCLUSION: From the results, it can be concluded that cognitive impairment has an association with root caries and number of missing teeth which increases the risk for the same and vice versa.

Robotic Telemedicine for Mental Health: A Multimodal Approach to Improve Human-Robot Engagement.

COVID-19 has severely impacted mental health in vulnerable demographics, in particular older adults, who face unprecedented isolation. Consequences, while globally severe, are acutely pronounced in low- and middle-income countries (LMICs) confronting pronounced gaps in resources and clinician accessibility. Social robots are well-recognized for their potential to support mental health, yet user compliance (i.e., trust) demands seamless affective human-robot interactions; natural 'human-like' conversations are required in simple, inexpensive, deployable platforms. We present the design, development, and pilot testing of a multimodal robotic framework fusing verbal (contextual speech) and nonverbal (facial expressions) social cues, aimed to improve engagement in human-robot interaction and ultimately facilitate mental health telemedicine during and beyond the COVID-19 pandemic. We report the design optimization of a hybrid face robot, which combines digital facial expressions based on mathematical affect space mapping with static 3D facial features. We further introduce a contextual virtual assistant with integrated cloud-based AI coupled to the robot's facial representation of emotions, such that the robot adapts its emotional response to users' speech in real-time. Experiments with healthy participants demonstrate emotion recognition exceeding 90% for happy, tired, sad, angry, surprised and stern/disgusted robotic emotions. When separated, stern and disgusted are occasionally transposed (70%+ accuracy overall) but are easily distinguishable from other emotions. A qualitative user experience analysis indicates overall enthusiastic and engaging reception to human-robot multimodal interaction with the new framework. The robot has been modified to enable clinical telemedicine for cognitive engagement with older adults and people with dementia (PwD) in LMICs. The mechanically simple and low-cost social robot has been deployed in pilot tests to support older individuals and PwD at the Schizophrenia Research Foundation (SCARF) in Chennai, India. A procedure for deployment addressing challenges in cultural acceptance, end-user acclimatization and resource allocation is further introduced. Results indicate strong promise to stimulate human-robot psychosocial interaction through the hybrid-face robotic system. Future work is targeting deployment for telemedicine to mitigate the mental health impact of COVID-19 on older adults and PwD in both LMICs and higher income regions.

Support groups for family caregivers of persons with dementia in India.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

Psychometric properties of outcome measures in non-pharmacological interventions of persons with dementia in low-and middle-income countries: A systematic review.

Despite high burden of dementia in low-and middle-income countries (LMICs), only a small number of clinical trials of psychosocial interventions for persons with dementia (PwD) have been conducted in these settings. It is essential that such trials use appropriate outcome measures that are methodologically robust and culturally appropriate to evaluate the effectiveness of interventions. We carried out a systematic review to examine the evidence base and psychometric properties of measures employed in these studies in LMICs. A systematic search of published literature on randomised controlled trials (RCT) of psychosocial interventions for PwD in LMICs between 2008 and April 2020 was carried out. Measures employed in each of the eligible studies were identified and through a focused search, we further explored the evidence base and psychometric properties employing Terwee criteria. Data extraction and quality appraisal were conducted by two independent reviewers. The review identified 41 measures from 17 RCTS which fulfilled eligibility criteria and they examined effectiveness across the domains of cognition (n = 16), behaviour and psychological symptoms (n = 11) and quality of life (n = 8). Of these 41, we were able to access relevant literature only for 18 and they were subject to psychometric analysis. Psychometric properties of these 18 instruments were at best modest, with Terwee scores ranging from 3 (low) to 15 (moderate). A majority of the studies were from China (n = 5) and Brazil (n = 6). The evidence base for the routinely employed measures in RCTs of non-pharmacological interventions for PwD in LMICs is limited. The quality of adaptation and validation of these instruments is variable and studies are largely uninformative about their psychometric properties and cultural appropriateness to the study setting. There is an urgent need to develop scientifically robust instruments in LMIC settings that can be confidently employed to measure outcomes in trials of psychosocial interventions for PwD.

Identification of clinical and psychosocial characteristics associated with perinatal depression in the south Indian population.

BACKGROUND: Longitudinal perinatal depression (PND) data is sparsely available in the Indian population. We have employed Edinburgh Postnatal Depression Scale (EPDS) to assess the prevalence and identify characteristics associated with PND in the south Indian population. PND was assessed longitudinally using EPDS scores with traditional cut-off approach as well as a novel method of latent class mixture modeling (LCMM). The LCMM method, to the best of our knowledge, has been used for the first time in the Indian population. METHODS: Three hundred and forty seven women, predominantly from economically-weaker sections of rural and urban South India were longitudinally assessed for antenatal depression (AD) and postnatal depression (PD) using EPDS cutoff-scores ≥13 and ≥10, respectively. Uni/multivariable analyses were used to identify PND associated characteristics. LCMM was then implemented, followed by risk characteristics identification. RESULTS: PND prevalence from traditional approach was 24.50 % (12.68 % AD; 18.16% PD). Characteristics associated with PND were urban-site and recent adverse life events. Irregular menstrual history and chronic health issues were associated with AD and PD, respectively. Three distinct PND trajectories were observed from LCMM-analysis: low-risk (76.08%), medium-risk (19.89%) and high-risk (4.04%). Urban-site, recent adverse life events, irregular menstrual history and pregnancy complications were associated with medium-risk/high-risk trajectories. LIMITATIONS: EPDS is a screening tool and not a diagnostic tool for depression. Since the study population included women from economically-weaker sections, the results need verification in other socio-economic groups. CONCLUSIONS: Both the traditional cut-off-based approach and LCMM provided very similar conclusions regarding the prevalence of PND and characteristics associated with it. Higher PND prevalence was observed in urban women compared to rural women. In low-income countries, identifying risk characteristics associated with PND is a critical component in designing prevention strategies for PND related conditions because of the limited access to mental health resources.

A New Approach for Developing "Implementation Plans" for Cognitive Stimulation Therapy (CST) in Low and Middle-Income Countries: Results From the CST-International Study.

Background: Even with a strong evidence base, many healthcare interventions fail to be translated to clinical practice due to the absence of robust implementation strategies. For disorders such as Alzheimer's disease and other dementias, access to evidence-based interventions beyond research settings is of great importance. Cognitive Stimulation Therapy (CST) is a brief, group-based intervention, with consistent evidence of effectiveness. Methods: An implementation focused, three-phase methodology was developed using extensive stakeholder engagement. The methods resulted in a standardized Implementation Plan for the successful translation of CST from research to practice. The methodology was developed using the Consolidated Framework for Implementation Research (CFIR) and refined in three countries that vary in levels of economic development and healthcare systems (Brazil, India and Tanzania). Results: Five Implemention Plans for CST were produced. Each plan contained implementation strategies and action plans devised in conjunction with policy professionals, healthcare professionals, people with dementia and family carers, and an international team of researchers and clinicians. Conclusion: This novel methodology can act as a template for implementation studies in diverse healthcare systems across the world. It is an effective means of devising socio-culturally informed Implementation Plans that account for economic realities, health equity and healthcare access.

Experiences and Needs of Caregivers of Persons With Dementia in India During the COVID-19 Pandemic-A Qualitative Study.

OBJECTIVE: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India. DESIGN: Qualitative study using a telephonic semistructured interview. SETTING: A specialist geriatric outpatient mental health service based in a nongovernmental organization in Chennai, India. PARTICIPANTS: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months. RESULTS: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. CONCLUSION: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.

Capacity & capability building for applied dementia research in low- & middle-income countries: Two exemplars from South Asia.

BACKGROUND & OBJECTIVES: Cognitive and other neurodegenerative conditions related to ageing have become public health priorities in low- and middle-income countries. However, contextually based, applied research to support the development of awareness, diagnosis and care pathways for people with dementia in South Asia is still largely undeveloped. This study was aimed to use applied research studies for dementia in South Asia as exemplars of how individual-level capacity and capability building for dementia research can be achieved. METHODS: Using Theory of Change as a framework, we embedded capacity and capability building into the studies through six domains: people (human resources), research integrity and governance, study delivery skills, international collaborative working, patient and public involvement (PPI) (awareness raising, stigma and health literacy) and development of 'pathways'. For each aspect, development goals were defined and how they would be achieved. RESULTS: New principal investigators, research assistants (including outcome raters), study coordinators and intervention practitioners were trained across eight study sites in India, Pakistan, and Bangladesh, for dementia research. Training was delivered at study start, and through booster sessions, using workshops, face-to-face sessions, online training and video-link sessions. International collaborations were fostered, leading to a proposal for international funding. Each study site co-created PPI events to raise awareness and to inform the research. The recruitment pathways and study logistics fostered the development dementia diagnosis and care pathways. INTERPRETATION & CONCLUSIONS: Embedding capacity and capability building in applied dementia research in South Asia fosters the sustainability of dementia research, which is essential in developing diagnostic and care pathways.

Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: study protocol for Brazil, India and Tanzania (CST-International).

INTRODUCTION: In low/middle-income countries (LMICs), the prevalence of people diagnosed with dementia is expected to increase substantially and treatment options are limited, with acetylcholinesterase inhibitors not used as frequently as in high-income countries (HICs). Cognitive stimulation therapy (CST) is a group-based, brief, non-pharmacological intervention for people with dementia that significantly improves cognition and quality of life in clinical trials and is cost-effective in HIC. However, its implementation in other countries is less researched. This protocol describes CST-International; an implementation research study of CST. The aim of this research is to develop, test, refine and disseminate implementation strategies for CST for people with mild to moderate dementia in three LMICs: Brazil (upper middle-income), India (lower middle-income) and Tanzania (low-income). METHODS AND ANALYSIS: Four overlapping phases: (1) exploration of barriers to implementation in each country using meetings with stakeholders, including clinicians, policymakers, people with dementia and their families; (2) development of implementation plans for each country; (3) evaluation of implementation plans using a study of CST in each country (n=50, total n=150). Outcomes will include adherence, attendance, acceptability and attrition, agreed parameters of success, outcomes (cognition, quality of life, activities of daily living) and cost/affordability; (4) refinement and dissemination of implementation strategies, enabling ongoing pathways to practice which address barriers and facilitators to implementation. ETHICS AND DISSEMINATION: Ethical approval has been granted for each country. There are no documented adverse effects associated with CST and data held will be in accordance with relevant legislation. Train the trainer models will be developed to increase CST provision in each country and policymakers/governmental bodies will be continually engaged with to aid successful implementation. Findings will be disseminated at conferences, in peer-reviewed articles and newsletters, in collaboration with Alzheimer's Disease International, and via ongoing engagement with key policymakers.