Completed Brain & Nervous System

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

In plain English

AI plain-English summary

By 2050, 90 million people with dementia will live in low- and middle-income countries (LAMICs), yet most of these nations lack the health systems, trained workers, and funding to support them. This matters because dementia care costs fall overwhelmingly on unpaid family carers—mostly women—who often quit paid work, risking personal poverty and lost economic productivity. As families shrink and societies change, that informal care is becoming less available. The gap between rising need and weak public services is widening fast. The project will build local research capacity in seven LAMICs—Brazil, India, Indonesia, Kenya, Jamaica, Mexico, and South Africa—by training researchers in economics, epidemiology, and policy analysis. It will generate practical tools: plain-language evidence summaries, cost projections, and simulation models that each country can update easily. These will help governments plan dementia care pathways, estimate future service needs, and design National Dementia Plans. The work also includes an intervention to reduce stigma and a qualitative study of family care costs. If successful, the project will give policymakers in LAMICs the data and frameworks they need to allocate scarce resources effectively, potentially slowing the financial and social damage of dementia on families and national economies.

View original technical description
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.

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Researchers

Adelina Comas-Herrera (Co-Investigator)Crick Lund (Co-Investigator)David McDaid (Co-Investigator)Emily Freeman (Co-Investigator)Huseyin Naci (Co-Investigator)Marguerite Schneider (Co-Investigator)Martin Knapp (Principal Investigator)Sara Evans-Lacko (Co-Investigator)Sube Banerjee (Co-Investigator)

Related Research

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Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life.
Developing a sustainable platform to understand the primary care, public health and social care needs for dementia, with a focus on underserved populations
PRIDE - Promoting Independence in Dementia
Translating evidence of costs and benefits of support at home in later stage dementia: to the NHS, social care and family carers
Improve the health and wellbeing of older people and the quality of community care they receive, especially for people living with dementia.

Original classification

Research Grant

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