Dementia reports, studies, policy news from India and outside

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This is an advanced reading page for interested readers. The page does not provide information or suggestions relevant for day-to-day care of someone with dementia. If you are a caregiver looking for solutions, check our Caring for dementia menu. To know basics of dementia, start with What is Dementia.

This page provides a selection of dementia and caregiving related reports and policy discussions, mainly from India, along with some major reports from outside India.

Sections on this page:

The Dementia India Report 2010.

The Dementia India Report 2010 was released on September 21, 2010, and can be downloaded at the link Full report (PDF file) (archival copy) Opens in new window.

Kannada: The executive summary of the report was translated into Kannada by NIMHANS and can be downloaded/ viewed here: Kannada version, Dementia India Report 2010 (executive summary) (PDF file) Opens in new window. For more on this report, contact Dr. Girish Rao, NIMHANS, girishnrao@yahoo.com.

Assamese: An Assamese version of the executive summary of the report was created by the ARDSI Guwahati Chapter. Please contact them for details – more chapter details at this page Opens in new window or see the archived version here Opens in new window.

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Dementia India Strategy Report 2018.

ARDSI published a national strategy document after a series of region-wise national consultative meetings, and presented this to the Union Government in September 2018 and the Hon. Health Minister Shri J P Nadda who received it gave a public assurance that the central government would soon come out with a country plan for dementia. The submitted document can be viewed/ downloaded at Dementia India Strategy Report 2018 (PDF file)(archived copy) Opens in new window.

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Dementia in India 2020.

Dementia in India 2020 was published by the Alzheimer’s and Related Disorders Society of India (ARDSI) Cochin Chapter, with academic support from Kerala University of Health Sciences (KUHS) Thrissur and released at the International Conference of Alzheimer’s Disease 2019, Cochin University of Science and Technology (CUSAT). With the permission of the editors, the report is available on this site and can be viewed at Dementia in India 2020 (PDF file) Opens in new window.

The document collects 14 chapters by various authors, edited by Dr CT Sudhir Kumar et al. (suggested citation is Kumar CTS, Shaji KS, Varghese M, Nair MKC (Eds) Dementia in India 2020.) The document includes a collection of caregiver quotes and chapters on dementia assessment and diagnosis,Psychological and Behavioural Interventions in Dementia, Medical Management of Dementia, Dementia Prevalence in India, Dementia Care Costs in India, Legal and Ethical Issues in Dementia: Indian Scenario, Development of Community Resources for Dementia Care, Community Based Rehabilitation of People with Dementia: An Indian Experience, Caregiver Stress and interventions, Digital Interventions to Support Families, Dementia: Risk and Protective Factors, Experts’ and Stakeholders’ Consensus on Challenges and Priorities in Dementia, and National Dementia Strategy and Plan for India- the Roadmap.

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Studies related to dementia prevalence, risk factors, and care interventions in India.

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Important, recent reports from other countries/ world-wide.

COVID and dementia.

Alzheimer’s Disease International (ADI) has been making shared experiences of various countries in the COVID context available at its site and holding webinars and sharing suggestions at page: ADI offers advice and support during COVID-19 Opens in new window. The page is kept up-to-date with information on the various webinars and other work done by ADI.

Risk Reduction related major publications.

Dementia prevention, intervention, and care: 2020 report of the Lancet Commission: This Lancet report, published in Aug 2020, adds to the understanding of risk factors shared in their earlier 2017 report. The earlier report had identified modifiable factors as less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact. This report adds three more risk factors for dementia based on newer, convincing evidence. These are excessive alcohol consumption, traumatic brain injury, and air pollution. The report states that together the 12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed. The potential for prevention is high and might be higher in low-income and middle-income countries (LMIC). Check Dementia prevention, intervention, and care: 2020 report of the Lancet Commission Opens in new window .

Risk reduction of cognitive decline and dementia: WHO Guidelines: In May 2019, World Health Organization (WHO) published a 96 page report with evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia. This is intended as a tool for health care providers, governments, policy-makers and other stakeholders to strengthen their response to the dementia challenge. Check: Risk reduction of cognitive decline and dementia: WHO Guidelines Opens in new window .

Lancet Commissions: Dementia prevention, intervention, and care: Lancet published a 62 page detailed report in July 2017, consolidating expert opinion on the emerging knowledge of how to prevent and manage dementia. This report includes the key messages of the commission as well as supporting discussions, data, and references. For this the Commission has looked at their understanding of the best evidence of how to prevent the preventable, treat the treatable, and care for both the person living with dementia and the carer. The report can be viewed/ downloaded free by using a (free) subscriber account on the Lancet site, at Dementia prevention, intervention, and care Opens in new window.

Nutrition and dementia: A review of available research (ADI): In February 2014, Alzheimer’s Disease International (ADI) published a report that investigates the role of right nutrition in the life of persons with dementia. The report reviews dietary factors across the life course in terms of the risk of late onset dementia. It includes suggestions on nutrition-related actions. Check: Nutrition and dementia: A review of available research Opens in new window.

Also see World Alzheimer Report 2014, detailed in next section.

World Alzheimer Report, published yearly by Alzheimer’s Disease International.

For the past few years, the Alzheimer’s Disease International has been publishing an annual World Alzheimer Report, usually released in September, with each report focused on one important aspect and dealing with it in detail, combining research data, observations from across the world, and suggestions/ conclusions. Here are the reports published so far.

  • The World Alzheimer Report 2023: ‘Reducing dementia risk: never too early, never too late’, a 96 page report written in a journalistic style, discusses reducing the risk of dementia, offers global insight on how risk factors are experienced around the world, looks at drivers and provides an overview of modifiable and non-modifiable risk factors. Case studies are included. It calls for governmental action for population-based systemic risk reduction. See World Alzheimer Report 2023: Reducing dementia risk: never too early, never too late Opens in new window.
  • The World Alzheimer Report 2022: ‘Life after diagnosis: Navigating treatment, care and support , a 416 page report, looks at the many facets of life for people with dementia, their carers, and healthcare professionals following a diagnosis of dementia. It has 119 essays across 24 chapters, written by researchers, health and social care professionals, informal carers, and people living with dementia. See World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support Opens in new window.
  • The World Alzheimer Report 2021: ‘Journey through the diagnosis of dementia’ focuses on the global challenge around the crucial and timely subject of diagnosis, and explores the diagnosis journey through the lens of those living with dementia and carers, clinicians, researchers and academics, and Alzheimer and dementia associations, as well as what can and must be improved. Check World Alzheimer Report 2021: Journey through the diagnosis of dementia Opens in new window.
  • The World Alzheimer Report 2020: ‘Design, Dignity, Dementia: dementia-related design and the built environment’ is a large report (Volume 1 is 248 pages and Volume 2 is 264 pages), that looks at design progress to date, best practices, pioneers and innovators, design principles, application, regional and cultural contexts, including people with dementia in the design process, and design during the coronavirus pandemic and beyond. It includes 84 case studies. A webinar held at the launch, with interviews of many experts is available as a video recording and the slides used. Check: World Alzheimer Report 2020: Design, Dignity, Dementia: dementia-related design and the built environment Opens in new window.
  • The World Alzheimer Report 2019: ‘Attitudes to Dementia’ includes analysis of the findings of a survey of almost 70,000 people across 155 countries and territories, as well as expert essays and case studies from across the world. The survey spanned people living with dementia, carers, healthcare practitioners and the general public. Analysis of the study, which collected responses from, was carried out by the London School of Economics and Political Science (LSE). Check: The World Alzheimer Report 2019 Opens in new window.
  • The World Alzheimer Report 2018: ‘The state of the art of dementia research: New frontiers’, written by journalist Christina Patterson, puts together interviews with multiple experts and stakeholders to look at research areas including basic science, diagnosis, drug discovery, risk reduction, and epidemiology. It also features progress, innovation and developments in care research, and calls on governments to commit funds for dementia research. Check: The World Alzheimer Report 2018 Opens in new window.
  • The World Alzheimer Report 2016: ‘The Global Impact of Dementia: Improving healthcare for people living with dementia’ reviews research evidence on healthcare elements related to dementia care, and suggests ways to make it better and more efficient. It suggests that the current over-specialised approach should be moved to an approach that balances specialized care with a more prominent role for primary and community care, so as to increase capacity, reduce overall costs, and allow scaling of care. Check: The World Alzheimer Report 2016: Improving healthcare for people living with dementia: Coverage, quality and costs now and in the future Opens in new window.
  • The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’ provides updated data on dementia’s global prevalence, incidence and cost. It highlights the impact on low and middle income countries (LMICs), and includes information from India. It includes key recommendations and also reviews the evidence for and against recent trends in the prevalence and incidence of dementia over time. It also has an analysis of the broader societal impact of dementia. Check: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’ Opens in new window.
  • World Alzheimer Report 2014–Dementia and Risk Reduction: An analysis of protective and modifiable factors. This was published in September 2014 and reissued with minor corrections in 2014, and critically examines the evidence for the existence of modifiable risk factors for dementia. It focuses on sets of potential modifiable risk factors in four key domains, namely developmental, psychological and psychosocial, lifestyle and cardiovascular conditions. Recommendations are included. Check World report 2014 Opens in new window.
  • World Alzheimer’s Month 2013 – Dementia: a journey of caring. This report focuses on the caring journey. Check The World Alzheimer Report 2013 – Journey of Caring: An analysis of long-term care for dementia Opens in new window.
  • World Alzheimer Report 2012: Overcoming the stigma of dementia. This report is based on a worldwide survey conducted with people with dementia and carers on their personal experiences of stigma. The report discusses stigma and dementia, highlights best practices and includes recommendations. Check: World Alzheimer Report 2012 Opens in new window.
  • World Alzheimer Report 2011: Benefits of early diagnosis and prevention. This report includes interventions that are effective in the early stages of dementia. and states that there is a strong economic argument in favor of earlier diagnosis and timely intervention. Check World Alzheimer Report 2011 Opens in new window.
  • World Alzheimer report 2010. This provides a comprehensive global picture of the economic impact of Alzheimer’s disease and dementia, including estimates (worldwide, and for various regions) of the cost of dementia. Direct medical costs, direct non-medical costs and costs of informal (family) care are considered for this. Policy recommendations are included. Check: World Alzheimer report 2010 Opens in new window.
  • Full list of reports can be seen here Opens in new window.

Various issues of Alzheimer’s Disease International’s Global Perspective.

Every quarter or so, Alzheimer’s Disease International (ADI) publishes a newsletter, Global Perspective. This includes recognition for people with dementia and updates on work being done for dementia from many countries. Subscribe to the newsletter Opens in new window.

Dementia Innovation Readiness Index.

A series of reports (2017, 2018 , 2020 and 2021) have been published on ‘Dementia Innovation Readiness Index’ by the Global Coalition on Aging (GCOA) and ADI. The details of these can be seen at the ADI site Opens in new window and the site of Global Coalition on Aging Opens in new window.

The 2021 report (Nov 2021) Opens in new window (download here (PDF file)Opens in new window) evaluates the progress of 10 European countries: Belgium, Czech Republic, Finland, France, Germany, Italy, Slovenia, Spain, Sweden and the United Kingdom on how they are addressing Alzheimer’s disease along five categories of readiness.

The 2020 Report (Oct 2020) Opens in new window, (download here (PDF file) Opens in new window) which also included the  Lien Foundation as collaborator, focused on city-level innovation readiness to dementia in 30 major cities globally (includes Bangalore from India).

The 2018 report (July 2018) Opens in new window (download here (PDF file)Opens in new window) analyzed the readiness of countries to develop and deploy dementia solutions into their healthcare, policy and social frameworks for five countries: Argentina, Brazil, China, India, and Saudi Arabia – countries with younger populations than the G7 countries.

The 2017 report (April 2017) Opens in new window (download here (PDF file) Opens in new window) evaluated innovation in dementia treatment, prevention, and care across G7 countries.

Alzheimer’s Disease Facts and Figures (USA), annual reports from Alzheimer’s Association, USA.

Every year, Alzheimer’s Association, USA, publishes a report on Alzheimer’s Disease Facts and Figures, where it covers topics like definitions, symptoms, types of dementia, diagnostic criteria, prevalence, mortality, impact on caregivers and cost to nation (USA), etc., and also includes some special focus topics (focus for that year).

Information from, and download links for the latest report can be seen at this link Opens in new window . The 2024 report includes a special section on Mapping a Better Future for Dementia Care Navigation PDF of the special report is downloadable here Opens in new window). Older reports don’t seem to be earlier available at the site, but they may be available here Opens in new window.

Women and Dementia: Some published reports.

Some international reports have examined how dementia affects women and the various factors that are involved.

The Women & Dementia – A Global Challenge Opens in new window (from archives) report was published in March 2017 by the Global Alzheimer’s & Dementia Action Alliance/ Alzheimer’s Society. It collates published research on the issue and highlights that the prevalence, care burden and stigma of dementia disproportionately affects women, making it a global women’s health, social care and rights challenge that can no longer be ignored. The report analyses existing national policy responses to the gendered challenges of dementia and outlines the international frameworks that can guide national dementia plans and initiatives to providing gender-appropriate responses.

The Women and Dementia: A global research review Opens in new window report was published in June 2015 by Alzheimer’s Disease International, and discusses the main issues affecting women in relation to dementia from an international perspective. It examines the effect of gender on three specific groups: women living with dementia; women caring for people with dementia in a professional caring role; women undertaking an informal caregiving role for someone with dementia.It focuses on cross-cutting issues, including factors affecting women in low and middle income countries (LMICs); family structures and kinship; and the effects of migration.

Important releases from WHO.

A Blueprint for Dementia Research: Published Oct 2022. This document summarizes the current state of dementia research across six broad themes, identifies gaps and outlines how to address these with strategic goals, actions and timebound milestones. It outlines drivers of research and is intended to help policymakers, funders, and the research community. Read about it/ download it at this link. Opens in new window.

Global status report on the public health response to dementia: Published Sept 1, 2021 by WHO: This report, published halfway into the implementation of the Global dementia action plan, takes stock of actions so far by various involved entities, identifies barriers to implementation especially in the COVID scenario, and highlights important action areas. Includes updated estimates on global dementia burden and costs. Read about it and download it from this link Opens in new window.

Dementia: a public health priority (2012) by World Health Organization (WHO): The World Health Organization and Alzheimer’s Disease International published a report on dementia in 2012. Read about it and download it here: Dementia: a public health priority (PDF file) Opens in new window. This is a standard, much-quoted landmark report.

Global Action Plans against Dementia: The World Health Organization (WHO) released four short, thematic briefs for the First WHO Ministerial Conference on Global Action Against Dementia, 16-17 March 2015. These thematic briefs can be seen here Opens in new window. Another document released later, for 2017-2025 is Global action plan on the public health response to dementia 2017–2025 Opens in new window. A (2017) Draft global action plan on the public health response to dementia: report by the Director-General Opens in new window is also available .

Global burden of dementia and Various National Dementia Strategies/ Policies/ Plans: status, discussions, examples.

From Plan to Impact (ADI): Alzheimer’s Disease International has been publishing annual reports that provide an overview of national responses to dementia around the world, called “From Plan to Impact.” The May 2023 report, From Plan to Impact VI (PDFfile) Opens in new window, recognizes that though COVID-19 is no longer monopolising attention, health systems are still feeling its shockwaves. In spite of the 2017 unanimous adoption of the Global action plan by all 194 Member States of WHO, only around 20% of Member States have developed National Dementia Plans so far. ADI intends to formally propose an extension until 2029 in order to give the world’s governments more time to reach the targets. Country-wise status is shared. The May 2022 version From Plan to Impact V (PDF file) Opens in new window , May 2021 report, From Plan to Impact IV (PDF file) Opens in new window and the June 2020 report From Plan to Impact III (PDF file) Opens in new window include discussion on how COVID has impacted work being done in various nations for dementia. Earlier reports include (May 2019) From Plan to Impact II (PDF file) Opens in new window and (May 2018) From Plan to Impact [PDF file) Opens in new window. Some coverage of India’s status is included.

Lancet: Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019: This 21-page report was published by Lancet in January 2022. It is based on a study aimed to improve on previous forecasts of dementia
prevalence by producing country-level estimates and incorporating information on selected risk factors. The report can be viewed/ downloaded from the Lancet site, at Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019 Opens in new window (PDF file) .

Lancet: Global, regional, and national burden of Alzheimer’s disease and other dementias: This 19-page report was published in November, 2018 and provides the national burden report for 1990–2016. It presents the first detailed analysis of the global prevalence, mortality, and overall burden of dementia as captured by the Global Burden of Diseases, Injuries, and Risk Factors (GBD) Study 2016, and highlights the most important messages for clinicians and neurologists. The report can be viewed/ downloaded from the Lancet site, at Global, regional, and national burden of Alzheimer’s disease and other dementias, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016 Opens in new window (PDF file) .

Alzheimer’s Disease International page for plans: ADI maintains a page at Government Alzheimer plans Opens in new window where it discusses the broad areas that national plans must address. It provides reports, reviews, and status updates related to the the national dementia/ Alzheimer’s plans and policies of various nations.

World Dementia Council: The World Dementia Council regularly undertakes projects and publishes various reports: see site at World Dementia Council Opens in new window.

The Global Impact of Dementia 2013-2050 (ADI): Alzheimer’s Disease International (ADI) published a policy brief for heads of government ahead of the first G8 Dementia Summit held in December 2013. This included updates on the earlier published prevalence figures, data on the current and future impact of dementia world-wide, and recommendations. Click here: Policy Brief: The Global Impact of Dementia 2013-2050 Opens in new window.

Some examples: National Dementia Strategy (England, Wales, Northern Ireland), National Plan to Address Alzheimer’s Disease(USA): Information about these national dementia strategies and related download links are available here: Information on National Dementia Strategies in England, Wales and Northern Ireland Opens in new window. Information on USA’s plan for Alzheimer’s Disease and related disorders are this link: National Plans to Address Alzheimer’s Disease (USA) Opens in new window.

Dementia in the Asia Pacific Region (2014 report): Alzheimer’s Disease International published Dementia in the Asia Pacific Region in November 2014. This report provides some insight on of the social and economic impact of dementia across the countries of the Asia Pacific region. It includes updated estimates of dementia prevalence data for the region. Profiles of ADI member associations in this region are also included. Read the report: “Dementia in the Asia Pacific” Opens in new window or download it: Dementia in the Asia Pacific (PDF file) Opens in new window.

Dementia Friendly Communities (DFCs).

Alzheimer’s Disease International maintains resources on DFCs at Dementia Friendly Communities (DFCs) Opens in new window. The principles and a collection of initiatives are also available as reports in PDF format from this page.

10/66 PROJECT OF ADI.

10/66, is a project of Alzheimer’s Disease International, coordinated from the Institute of Psychiatry, Psychology and Neurosciences at King’s College London. The 10/66 Dementia Research Group carries out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries. The site is here.

Others.

New Diagnostic Criteria and Guidelines for Alzheimer’s Disease: In April 2011, new diagnostic criteria and guidelines for AD were released (27 years after the last release of such guidelines). Read this report on the release Opens in new window. These revised guidelines recognize three stages of AD. They propose biomarkers for preclinical Alzheimer’s Disease, Mild Cognitive Impairment (MCI), and Alzheimer’s Disease. Diagnostic criteria are provided for AD. All-cause dementia is also defined (not just AD).

Nun’s Study.

The Nun Study is a longitudinal study of aging and Alzheimer’s disease funded by the National Institute on Aging. Results from this study are considered very important in understanding how Alzheimer’s develops and grows, and how various persons show the symptoms. Read about the study here: The Nun Study Opens in new window.

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