Elsevier

The Lancet Neurology

Volume 15, Issue 12, November 2016, Pages 1285-1294
The Lancet Neurology

Policy View
Research priorities to reduce the global burden of dementia by 2025

https://doi.org/10.1016/S1474-4422(16)30235-6Get rights and content

Summary

At the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, 160 delegates, including representatives from 80 WHO Member States and four UN agencies, agreed on a call for action to reduce the global burden of dementia by fostering a collective effort to advance research. To drive this effort, we completed a globally representative research prioritisation exercise using an adapted version of the Child Health and Nutrition Research Initiative method. We elicited 863 research questions from 201 participants and consolidated these questions into 59 thematic research avenues, which were scored anonymously by 162 researchers and stakeholders from 39 countries according to five criteria. Six of the top ten research priorities were focused on prevention, identification, and reduction of dementia risk, and on delivery and quality of care for people with dementia and their carers. Other priorities related to diagnosis, biomarkers, treatment development, basic research into disease mechanisms, and public awareness and understanding of dementia. Research priorities identified by this systematic international process should be mapped onto the global dementia research landscape to identify crucial gaps and inform and motivate policy makers, funders, and researchers to support and conduct research to reduce the global burden of dementia. Efforts are needed by all stakeholders, including WHO, WHO Member States, and civil society, to continuously monitor research investments and progress, through international platforms such as a Global Dementia Observatory. With established research priorities, an opportunity now exists to translate the call for action into a global dementia action plan to reduce the global burden of dementia.

Introduction

Population ageing will lead to a dramatic increase in dementia prevalence across all world regions. By 2050, more than 131·5 million people are expected to be affected.1 Dementia is already a heavy burden for those living with the disease, their families, and society. The burden and global annual costs of US$818 billion are expected to increase substantially in the next few decades.1

An unprecedented coordinated global response is imperative to effectively address the burden and challenges of dementia. The public health approach to dementia called for by WHO in 2012 has rapidly gained widespread support among world leaders, researchers, and stakeholders.2 At the historic G8 Dementia Summit held in London in December, 2013, the G8 countries launched a Global Action Against Dementia. The 12 agreed specific commitments included the identification of strategic research priority areas and the development of a coordinated international research action plan,3 and culminated in the First WHO Ministerial Conference on Global Action Against Dementia in March, 2015, which brought together stakeholders (ie, policy makers, patients' representatives, funders, and advocates) and experts from research, clinical practice, and non-governmental organisations.

Since resources and funding for research are scant despite increases in recent years, research priorities need to be set to guide policy makers and funding organisations as they work to advance the dementia research agenda. In the past decade, several efforts, including the Grand Challenges initiatives, have been made successfully to identify research priorities in various specialties, from global health4 to chronic non-communicable diseases5 and mental health.6 These initiatives have had great merit in spurring research progress, because the identification of research priorities is crucial to inform governments, funding agencies, and the private sector about how to prioritise investments systematically. A fully transparent, systematic, rigorous, replicable, and fair prioritisation process, that is globally representative and involves all relevant stakeholders, is needed to guide a coordinated international response to the existing complex and sizeable challenges in dementia research. The Child Health and Nutrition Research Initiative (CHNRI) method was developed to respond to this need for methodological rigour and has been successfully used as a tool to assist decision making and consensus development in child health and nutrition,7 and subsequently in several other priority-setting exercises,8 including research into disability9 and global mental health.10

Past research prioritisation exercises in the specialty of dementia have been insightful and have used various approaches and methods, but they have not been done on a global scale. For example, in both the USA and Europe, unmet needs and research priorities for neurodegenerative diseases or Alzheimer's disease have been identified by non-systematic consultations with selected groups of experts,11, 12, 13 or with health and social care professionals and patients' and carers' representatives.14

In this Policy View, we report the research priorities that need to be addressed in the next 10 years to substantially reduce the global burden of dementia on patients, their families, and society. These priorities were identified through an adapted CHNRI exercise done under the auspices of WHO in preparation for the First WHO Ministerial Conference on Global Action Against Dementia. In panel 1, we list the aims of this Policy View. In panel 2, we describe the context, purpose, and remit of the present CHNRI exercise adapted to the specialty of dementia.

Section snippets

Current status of dementia research

Although no systematic analysis is available of global data that details the full scope of ongoing dementia research projects, research expenditures, and the number of individuals with dementia or their carers participating in research, many individual national and international efforts have been made to map assets devoted to dementia research. For example, the International Alzheimer's Disease Research Portfolio15 was launched in 2010 by the US National Institute on Aging and the US

Identification of dementia research priorities

WHO initiated a dementia research prioritisation exercise and entrusted an advisory group of internationally recognised experts and stakeholders in the specialty of dementia to lead the development of the scope, methods, and implementation of the exercise. The group was balanced in terms of sex, technical expertise, and regional representation, with inclusion of experts, advocates, and patients' representatives from low-income and middle-income countries (LMICs; appendix pp 2). Income category

Results

We identified 2004 experts (672 researchers and 1332 stakeholders; appendix pp 3–4). We successfully contacted 1386 (69%) experts, of whom 201 (15%) submitted their research questions. Experts were from 33 countries (23 high-income countries [HICs] and ten middle-income countries in the WHO regions of Europe, southeast Asia, Africa, the west Pacific, and the Americas), and they proposed 863 individual research questions, a mean of four questions each (appendix pp 3, 15–37). The consolidation

WHO dementia research prioritisation project

To address the reduction of the burden of dementia globally in the next 10 years, this Policy View presents priority scores for the 59 thematic research avenues and seven overarching research domains identified by the WHO dementia research prioritisation project. On the basis of potential for success, equity, burden reduction, and translation, six of the top ten research priorities, ranked by overall score, were focused on prevention, identification, and reduction of dementia risk, and on

Policy implications

The 59 thematic research avenues and the seven overarching research domains presented in this Policy View cover comprehensively the action points of the WHO call for action document that was adopted by more than 160 representatives, including 80 WHO Member States, on March 17, 2015, at the First WHO Ministerial Conference on Global Action Against Dementia held in Geneva, Switzerland. Indeed, the identified priorities provide a sound, balanced research agenda that spans substantially beyond the

Search strategy and selection criteria

We searched MEDLINE, Embase, Google Scholar, and the Cochrane Library, as well as the internet (using Google and other search engines), for reports of dementia research priorities or challenges, published between January, 2000, and Dec 31, 2014, with no language restrictions, before the priority-setting exercise was done. We updated the search on June 1, 2016, for the Discussion. We developed and adapted our search strategies by combining PubMed Medical Subject Headings and free-text terms (ie,

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