Cognitive Stimulation Therapy (CST) for dementia: International implementation in Brazil, India and Tanzania (CST-International)

Dementia presents huge financial costs and significantly reduces quality of life for people and their families. However, it remains largely unrecognised and untreated in low and middle income countries. There is an urgent need to introduce simple interventions which can address this treatment gap, something that has been done successfully in other places including the UK. Cognitive Stimulation Therapy (CST) is an evidence-based, group non-pharmacological intervention shown to significantly improve cognitive functioning and quality of life. It can be delivered to a wider population than can medication, as it has no known side-effects, can be delivered by non-medical personnel, does not require specialist equipment or training and is low cost.
This key aim of this project is to create an ongoing and sustainable programme to implement CST in various regions within these three countries. A secondary objective is to increase awareness and skills in the detection and management of dementia, both for health workers and families. We have selected an upper middle income (Brazil), lower middle income (India) and low income (Tanzania) country, to provide a broad range of economic as well as geographical and cultural challenges. All three countries have already a) previously translated and adapted the CST manual, following the same (recommended) process, b) begun or completed initial testing, with positive results and c) engaged local stakeholders and gathered initial ideas on implementation.
In each country, (i) we will investigate the things that are likely to help or hinder implementation of CST. We will interview a range of people including clinicians, policy makers and people with dementia and their families, enabling a rich perspective. (ii) We will develop an implementation strategy for each region included, but with shared themes across all sites. (iii) We will test this strategy through looking at how well it works. We will train CST trainers and attempt to recruit 50 people with dementia in each country (150 in total) into CST groups. We will see whether people attend the sessions, enjoy the sessions and whether facilitators are able to run sessions as intended. We will measure outcomes including cognition and quality of life in people with dementia and look at the costs of running groups in each setting. A three hour family educational session, developed as part of this study; will be offered by the researchers to all families of those who were screened and not included in the study, and to those who participate (after completion of follow-up measures, hence avoiding impact on outcomes). Wherever possible, this will be offered in a group format, both to encourage communication between family members and for the economy of time. People may be offered further support such as physical examinations, depending on the setting, needs and availability of resources (iv) Our testing phase will enable us to adapt and improve our implementation strategy, which we will then disseminate both locally, nationally and internationally. This will include published training manuals, a sustainable CST training programme, ongoing CST groups with ongoing sources of referral, financial arrangements and, if applicable, changes in policy. We hope that, more broadly, the work will result in increased knowledge and awareness of screening, diagnosing and treating dementia, with recommendations of routine outcome measures. This will be achieved through the CST training, the screening procedures, the CST intervention and the family education session.

Despite huge financial costs and impact on quality of life, dementia is largely unrecognised and untreated in low and middle income countries and there is an urgent need for the implementation of simple interventions. Cognitive Stimulation Therapy (CST) is an evidence-based, group non-pharmacological intervention which can significantly improve cognition and quality of life in dementia. It is low cost, does not require specialist equipment and can be provided by community workers.
This study aims to create ongoing and sustainable CST implementation programmes in an upper middle (Brazil), lower middle (India) and low income (Tanzania) country. All have a) translated and adapted the CST manual, following a standardised process, b) begun or completed feasibility or pilot work with positive results and c) engaged local stakeholders and gathered initial data on implementation. A secondary objective is to increase awareness and skills in the detection and management of dementia, both for health workers and families.
In each country, we propose to: (i) Investigate the likely barriers and facilitators of implementation using meetings and qualitative interviews with stakeholders, including clinicians, policy makers, academics and people with dementia and their families; (ii) Develop an implementation strategy, with generic themes and unique considerations for each setting; (iii) Test this strategy through collecting data on 150 people with dementia (50 in each country) attending 14 sessions of group CST. We will examine feasibility (adherence, attendance, acceptability and attrition), agreed parameters of success (numbers of trained facilitators, numbers of groups run), outcomes (cognition, quality of life, activities of daily living) and costs / affordability of models; (iv) Refine and disseminate implementation strategies, enabling ongoing pathways to practice to include published training manuals, a sustainable CST training programme and changes in policy.

The project will contribute to the expected impact set out in the GACD call text, though increasing our understanding of how to successfully implement a clinically effective and cost effective intervention for people with dementia. By the end of the study, there will have been substantial engagement with relevant local stakeholders in three regions of the world, enabling the ongoing implementation of CST once the project is complete. Further examples of impact will be:
1) Improved cognition and quality of life for the current generation of people with dementia. CST has consistently demonstrated such benefits, enabling people to live better lives, maximise their skills and reduce dependence and stigma for prolonged period of time.
2) Reducing the global costs of dementia. If economic models developed in the UK can be mirrored in these settings, people receiving CST would have lower direct costs (e.g. medication and services) and indirect costs (e.g. cost of caregiving and lost productivity).
3) Capacity building and a more trained and skilled workforce, with trained staff having a broader knowledge diagnosing, understanding and managing dementia.
4) Several established CST trainers, who can continue to offer train on an ongoing basis. In some cases, this will be free, e.g. through the All India institute of Speech and Hearing, Ministry of Health, Mysore, India.
5) More aware and educated communities, who have established pathways to seek help and sustainable CST provision. This will empower and engage active participation of people with dementia and their families and help to overcome stigma and discrimination, though demonstrating that people with dementia have retained skills, can still learn and contribute.
6) Continued collaboration between a team based in low, lower middle, upper middle and high income countries. The International CST centre at UCL will provide an ideal platform for this joint working and we would expect a long-term relationship with the GACD network.
7) Supporting the overarching principles of the WHO's Global Action against dementia, through a) fostering collaboration between stakeholders to improve care and to stimulate research, b) providing an evidence-based approach and shared learning, allowing advances in open research and data sharing and c) reducing the burden of dementia and raising its profile on the global public health agenda. Given the multi-national nature of our proposal, and its intended global reach, it has been designed to increase capacity to deliver CST independently of any specific model of healthcare provision.