Distributing leadership for scaling up evidence-based innovation in LMICs : a case for leadership development in India

Distribution of leadership across managers and clinicians, often located in different organisations, is crucial to drive and scale up innovation.1 2 There is a dual drive for leadership development in India, a nation characterised as a low-medium income country (LMIC), that emanates from front-line doctors and from national policy makers, to address the need for innovation in the face of rising costs of healthcare and increasing population demand. Given the size of India, its cultural variation, limited but rising investment in healthcare, geographical variation across states and between urban and rural settings, and its large number of doctors spread across public and private sectors,3 any systematic development programme to enable distribution of leadership for innovation presents a significant challenge

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

Older adults’ experience of neuropsychological assessments for dementia screening in South India: a qualitative study

Background: In community settings, neuropsychological assessment is the most commonly employed method for early recognition of dementia. However, little is known about the experience and perspectives of older adults when they undertake neuro psychological assessments in low-and middle-income countries (LMICs), including India. Methods: We conducted semi-structured interviews for 11 individuals (aged between 64 and 88 years) who had undergone cognitive assessment in the CST International (Cognitive Stimulation Therapy International) study and were free from dementia. The transcripts were analysed manually utilising Interpretative Phenomenological Analysis to develop key themes. Results: When data were analysed three super-ordinate themes (experiences related to the process, content and outcomes) each with a set of subordinate themes emerged. Conclusions: This study highlights the need for a thorough planning of pre-assessment briefing for equipping participants with adequate information related to the neuro psychological assessment: its indication, length of procedure, contents of the test, possible outcomes, medical implications of those outcomes, possible therapeutic options if diagnosed with lower cognitive function.We discuss our findings in relation to extant knowledge and explore issues clinicians should consider when conducting neuro psychological assessments in LMIC settings

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

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

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

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

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