STRiDE: Strengthening responses to dementia in developing countries (GCRF)

Lead Research Organisation: London School of Economics & Pol Sci
Department Name: LSE Health and Social Care

Abstract

Dementia is not a "developed world" condition: there are already more people with dementia in LAMICs than in high-income economies, yet LAMICs are typically less equipped to respond to the high and increasing prevalence. By 2050, there will be 90 million people with dementia in LAMICs (Prince et al 2015).
People with dementia, particularly at more severe stages, require intensive care and support, which is very costly. These costs are mostly borne by unpaid family carers, primarily women, who often have to leave paid work, risking personal impoverishment and societal productivity losses. LAMICs face rapid growth in numbers of people with dementia without well-developed or well-funded health and care systems. Family care availability is decreasing as a result of demographic, societal and economic changes.
We will build research capability using economics, epidemiology and policy analyses to help LAMICs respond to the needs of the growing numbers of people with dementia in an ethical and sustainable way. The co-applicants, from the UK and South Africa, have strong track-records in dementia research in high-income countries (HICs) and LAMICs, research on health and long-term (social) care in LAMICs. We will partner Alzheimer's Disease International (ADI), a federation of 85 national Alzheimer/dementia associations.
We will work with local researchers and NGOs in 7 LAMICs: Brazil, India, Indonesia, Kenya, Jamaica, Mexico, South Africa. To build capability we will offer formal training in research methods, application of those methods to generate new evidence and tools, and training and practice in use of evidence to inform policy. We will apply the best methodological approaches and publish our results in peer-reviewed journals, but more importantly we will ensure that our research generates practical tools for use directly by stakeholders to develop services and improve practice, or to influence policy.
We will use systematic reviewing and meta-analysis to review evidence on what works in LAMICs and what can be delivered in particular contexts, but also make that research available online and in DVDs as evidence summaries written in plain (dementia-friendly) language and translated to relevant local languages.
We will use Theory of Change (ToC) to co-develop with local partners (researchers/NGOs) and stakeholders (including people with dementia and carers) the research and training agenda for the project to ensure that our activities achieve maximum impact. ToC will also help us develop indicators to evaluate the project's impact.
Our research programme will involve development and evaluation of an intervention to increase dementia awareness and reduce stigma, a qualitative study of costs and other impacts of providing family care to people with dementia in different contexts, generation of quantitative evidence on impacts and costs of dementia on individuals and families, and instruments to collect these data.
We will use the evidence generated to develop, for each country, credible estimates of the costs and impacts of dementia, and use simulation modelling to project future dementia care needs, the health and social services required to meet those needs, their costs, and the impacts of implementing evidence-informed dementia care pathways and better coverage. Models for each country will be simple to update and adapt.
We will assess the policy implications of our projections, consider the barriers presented by current organisation and financing systems and the availability of trained workers, and outline reform opportunities to improve dementia, considering the wider health and social care systems.
Finally, we will work with ADI and other policy partners to produce local recommendations to support the implementation of National Dementia Plans. We will organise stakeholder workshops in each country to present project outcomes, and high level stakeholder meetings in each of the regions, in collaboration with WHO.

Planned Impact

Dementia is a relatively new, but fast-growing challenge for LAMICs. We will work with local researchers and NGOs in generating the research evidence and policy tools needed to support "evidence-based policy-making". This is why our overarching objective is "contributing to improve dementia care, treatment and support systems so that people living with dementia are able to live well, and so that their family and other carers do not shoulder excessive costs or risk impoverishment or experience their own health problems".
The team of academic applicants, based in the UK and South-Africa, and ADI and other international partners, will work with local researchers and NGOs in Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa. Through ADI, we have contacted local Alzheimer's or dementia associations in all of these countries, and all have expressed very strong interest in participating in the project. Each of them has also identified academic researchers working in the area of dementia. For example, Alzheimer's & Dementia Organisation Kenya (http://www.alzkenya.org/) responded: "We have been thinking of carrying out our own research in Kenya so we can understand the numbers affected by the disease and this angle of the project on how to 'respond to the challenge of meeting the needs of the growing numbers of people living with dementia in a sustainable way' is crucial to us as it helps us understand how to meet the needs of the people affected by the disease and the caregivers too."
Members of the team worked closely with local researchers and NGOs in Indonesia, Mexico and South Africa during the elaboration of the most recent World Alzheimer Report published by ADI (https://www.alz.co.uk/research/world-report-2016). That collaboration has had a very important influence in the gestation of this project, as it highlighted both the lack of information about the current situation of people with dementia and carers in most LAMICs, and the importance of having that knowledge in order to develop policies. The report also highlighted the lack of available evidence about what works in the care, treatment and support of people with dementia in LAMICs.
First, we will use Theory of Change (ToC) to co-develop the research and training priorities for the project overall and, working with local stakeholders, also in each country. The ToC process makes explicit the project's outcomes and identifies a hypothesized causal pathway for the programme to achieve its impact. This is used to identify indicators for all the outcomes, which will be used to monitor progress for each outcome in the short, medium and long-term, and finally to evaluate the project and each of the workpackages.
Following the priorities identified, we will offer formal training in research methods, application of those methods to generate new evidence and tools, and training and practice in use of evidence to inform policy. On completion, all the tools and models developed as part of this project will be made publicly available, building on the co-applicants' experience of, for example, the Dementia Evidence Toolkit developed in the UK as part of the ESRC/NIHR-funded MODEM project (http://toolkit.modem-dementia.org.uk/).
All project research and policy tools will be designed so that they are easy to update and adapt, and they can continue to be useful well after the end of the project, both by the local researchers and NGOs involved in this project, but also by other researchers, NGOs and policy-makers, both in the 7 study countries and more widely.
We will end the project by working with ADI and other policy partners to produce local recommendations to support the implementation of National Dementia Plans. To ensure that the outputs of the project have maximum impact, we will organise stakeholder workshops in each country to present project outcomes, as well as high level stakeholder meetings in each of the regions, in collaboration with WHO, ADI and IDB.

Publications


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