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

Lead Research Organisation: University College London
Department Name: Clinical Health and Educational Psych

Abstract

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.

Technical Summary

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.

Planned Impact

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.

Publications

10 25 50

 
Description Key findings are outlined below relating to the first two phases of the programme: (i) investigating things that are likely to help or hinder implementation of Cognitive Stimulation Therapy (CST) and (ii) an implementation strategy for CST for each region.

We interviewed a range of people including clinicians, policy makers and people with dementia and their families, to explore the barriers and facilitators to implementing CST. Implementation activities designed to overcome barriers or reinforce facilitators were identified, and a matrix system was developed to prioritise activities according to ease and necessity of implementation. Action plans were developed which delegated activities to staff members, alongside a local barrier and facilitator checklist to be used by newly trained facilitators before commencing a CST group, addressing logistical issues commonly faced when beginning CST. Five implementation plans for CST were produced - one for Brazil, one for Tanzania, and three for India (due to the diversity of the local sites in India).

Due to the COVID-19 pandemic, we moved to delivery of CST through videoconferencing. With teams in Brazil, India, Hong Kong and the UK, we co-developed guidance for delivering virtual CST. These have been field-tested and a protocol for virtual CST has now been developed and published in a peer-reviewed journal.

Additional findings relate to a secondary objective to increase awareness and skills in the detection and management of dementia. To meet this objective, we developed an evidence-based Dementia Awareness for Caregivers (DAC) course. During an initial acceptability test, feedback from recipients in Brazil, India and Tanzania indicated that the course was well received. Future work will consist of large-scale, formal evaluations and the development of additional local courses.
Exploitation Route The methodology used to create the implementation plans 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.

The virtual CST protocol is now published open-access and can be used by healthcare practitioners wishing to deliver CST over videoconferencing. We signpost to this protocol when training CST facilitators, and it is promoted on the International CST Centre website.

The Dementia Awareness for Caregivers course should be formally evaluated and, if found to have a positive effect, could feasibly be implemented as part of an induction or mandatory training for appropriate healthcare professionals in systems, or offered to carers or people with dementia attending Cognitive Stimulation Therapy.
Sectors Communities and Social Services/Policy,Healthcare

 
Description The virtual CST protocol is now published open-access and can be used by healthcare practitioners wishing to deliver CST over videoconferencing. We signpost to this protocol when training CST facilitators, and it is promoted on the International CST Centre website.
First Year Of Impact 2022
Sector Healthcare
Impact Types Societal,Policy & public services

 
Description Inclusion of Cognitive Stimulation Therapy in psychology professional practice training at the Pontifical Catholic University of Rio de Janeiro, as a result of engagement with course leaders
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Inclusion of Cognitive Stimulation Therapy on the Occupational Therapy diploma course at Kilimanjaro Christian Medical University College, as a result of engagement with course leaders
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Newcastle University medical students on an intercalated MRes (Global Public Health) carrying out research projects on Cognitive Stimulation Therapy in Tanzania
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Training of Cognitive Stimulation Therapy facilitators in Brazil
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Title Cultural adaptation of Alzheimer's disease assessment scale-cognitive (ADAS-Cog) subscale for use in India and validation of the Tamil version for South Indian population 
Description The Alzheimer's Disease Assessment Scale-Cognitive subscale (ADAS-Cog) is a subgroup of items from the Alzheimer's disease Assessment Scale. It includes items that assess cognitive abilities - word recall, comprehension, constructional praxis, ideational praxis, word-finding, orientation, spoken language ability and concentration. Lower scores indicate less impairment. Through a rigorous and replicable process for linguistic and cultural adaptation involving various stakeholders including service users and experts, the ADAS-Cog-Tamil was developed, and demonstrated good psychometric properties. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2020 
Provided To Others? Yes  
Impact Prior to the adaptation of this tool, no standardized tools were available in the Indian languages to assess changes in cognition. ADAS-Cog-Tamil 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. 
URL https://doi.org/10.1080/13607863.2021.1875192
 
Description Virtual Cognitive Stimulation Therapy 
Organisation University of Hong Kong
Country Hong Kong 
Sector Academic/University 
PI Contribution In response to the current clinical service gap and need to keep people with dementia engaged whilst remaining safe at home, CST International has been working to launch virtual CST groups through Zoom. UCL and The University of Hong Kong (HKU) have initial funding from UCL Grand Challenges to develop a partnership leading innovations in non-pharmacological interventions for dementia. CST International representatives from UK, Brazil and India, held a collaborative meeting with members of the HKU research team, to co-develop guidelines for virtual CST delivery. These guidelines will be followed throughout the implementation of CST in Brazil and India, where the teams have moved from in-person to online delivery. Following field-testing of these guidelines, a formal protocol for virtual CST was developed and has now been published open-access in a peer -reviewed journal.
Collaborator Contribution Assistant Professor Wong has been leading the BrainLive study in Hong Kong, a two-year funded programme testing the feasibility of delivering CST virtually. In order to share learning across different teams Professor Wong and her team attended a collaborative meeting and co-developed guidelines for delivering CST virtually.
Impact Guidance for delivering virtual CST has been co-developed for use in Brazil, India, Hong Kong and the UK, and a protocol for virtual CST has now been published open-access in a peer -reviewed journal. This is a multidisciplinary collaboration, involving the disciplines Psychology, Psychiatry, Social Work, and Social Administration.
Start Year 2020