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 patients menu. To know basics of dementia, start with What is Dementia.
Here is a selection of dementia and caregiving related reports and policy discussions, mainly from India, and also some major reports from outside India
- The Dementia India Report 2010.
- Studies related to dementia prevalence, risk factors, and care interventions in India
A collection of links to online abstracts/ papers.
- Important, recent reports from other countries/ world-wide.
The Dementia India Report 2010 was released on September 21, 2010, World Alzheimer’s Day. It can be downloaded from the ARDSI site . The links for the downloads are here: Executive summary (PDF file) and Full report (PDF file) .
Highlights of the report are discussed on this site on the page Dementia and caregiving in India.
The release of the report received wide coverage in media. The Times of India, in its September 22, 2010 issue, in its article titled More Indian women suffer from dementia than men, says report gave highlights of the report. It quoted Dr K Jacob Roy, chairman of Alzheimer’s and Related Disorders Society of India (ARDSI), as saying:
“Most cases go undiagnosed as people assume that it is just a normal ageing problem. In cases where the diagnosis is made, it is likely to be in moderately advanced stage,” he explained.
India Today discussed the report and gave its interview with Dr. Roy in its article titled Dementia alarm rings in country An excerpt from the article:
“In popular perception, dementia is still something associated with the West. Family members of those affected are not aware of it and there is stigma attached to it. Even physicians do not take early signs seriously,” said K. Jacob Roy, chairman, ARDSI.
The Hindu labelled the report as “timely” in its op-ed Dementia: a looming threat on September 29, 2010. To quote the op-ed:
With the exponential increase in the population of the elderly (60+ years) in India, an estimated 100 million today, expected to rise 198 million in 2030 and 326 million in 2050, dementia poses a looming public health challenge, the enormity of which cannot be underscored. The report thus addresses a felt need among professionals, policy makers, dementia sufferers and their families.
For translations of the report:
- Kannada: The executive summary of the report has been translated into Kannada by NIMHANS. It can be downloaded/ viewed here: Kannada version, Dementia India Report 2010 (executive summary) (PDF file). For more on this report, contact Dr. Girish Rao, NIMHANS, firstname.lastname@example.org
- Assamese: An Assamese version of the report is available: Download the Assamese report from the ARDSI Guwahati site (PDF file) .
- Hindi, Gujarati, Marathi: Translations are in draft mode, but not yet published (May 2014 status). Contact the ARDSI National Office for updates.
- DEMENTIA FRIENDLY KERALA – THE WAY FORWARD , Sudhir Kumar CT1,Babu Varghese, Harish M Tharayil, Jacob Roy, Kerala Journal of Psychiatry, Vol. 28, No. 1 (2015)
- Bilingualism delays age at onset of dementia, independent of education and immigration status , Alladi S, Bak TH, Duggirala V, Surampudi B, Shailaja M, Shukla AK, Chaudri JR, Kaul S, Neurology November 26, 2013 vol. 81 no. 22, 1938-1944
- Caregiving: A Public Health Priority , Shaji KS, Reddy MS, Indian J Psychol Med , 2012;34: 303-5
- Incidence of Alzheimer’s disease in India: a 10 years follow-up study , Mathuranath PS, George A, Ranjith N, Justus S, Kumar MS, Menon R, Sarma PS, and Verghese J., Neurol India. 2012 Nov-Dec;60(6):625-30. doi: 10.4103/0028-3886.105198
- Dementia mortality: Estimates of survival after the onset of dementia range from 4 to 12 years , Dr. Ravi Samuel, Indian J Psychiatry 2011;53:178-9
- Risk factors of dementia in North India: a case-control study , Tripathi M, Vibha D, Gupta P, Bhatia R, Padma Srivastava MV, Vivekanandhan S, Bhushan Singh M, Prasad K, Dergalust S, Mendez MF; Aging Ment Health. 2011 Jun 30
- Group intervention for carers of geriatric patients: experiences from a clinic in India , J. Henry, A. Jagannathan, K. Bhavana, B. Thomas, S. Bharath,M. Varghese, O. P. Jhirwal and P. T. Sivakumar; International Psychiatry, Volume 7 Number 2 April 2010
- Dementia care in developing countries: The road ahead by K S Shaji; Indian J Psychiatry 2009;51:5-7
- Behavioral symptoms and caregiver burden in dementia , Shaji KS, George RK, Prince MJ, Jacob KS; Indian J Psychiatry 2009;51:45-9
- The 10/66 dementia research group – 10 years on Martin J Prince, Indian Journal of Psychiatry, 2009, Vol 51, Issue 5, pages 8-15
- Family caregivers of people with dementia , Brodaty H, Donkin M; Dialogues Clin Neurosci. Jun 2009, 11(2): 217–228
- Closing the treatment gap for dementia in India , Dias A, Dewey ME, D’Souza J, Dhume R, Motghare DD, Shaji KS, Menon R, Prince M, Patel V., 2008 Jun 4; 3(6):e2333. Epub 2008 Jun 4.;53:178-9
- The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India by Dias A, Dewey ME, D’Souza J, Dhume R, Motghare DD, et al. (2008) PLoS ONE 3(6): e2333. doi:10.1371/journal.pone.0002333s
- Usefulness of the Rowland Universal Dementia Assessment Scale in South India , T Iype, B K Ajitha, P Antony, N B Ajeeth, S Job, K S Shaji; J Neurol Neurosurg Psychiatry 2006;77:513-514 doi:10.1136/jnnp.2005.069005
- Global prevalence of dementia: a Delphi consensus study by Cleusa P Ferri, Prof Martin Prince, Prof Carol Brayne, and others; The Lancet, Volume 366, Issue 9503, Pages 2112 – 2117, 17 December 2005
- The impact associated with caring for a person with dementia: a report from the 10/66 Dementia Research Group’s Indian network by Amit Dias, Ravi Samuel, Vikram Patel, Martin Prince, R. Parameshwaran and E. S. Krishnamoorthy, Int J Geriatr Psychiatry 2004; 19: 182–184
- Care arrangements for people with dementia in developing countries by 10/66 Dementia Research Group, Int J Geriatr Psychiatry 2004; 19: 170–177.
- Sensitivity and Specificity of Cognitive and Functional Screening Instruments for Dementia: The Indo-U.S. Dementia Epidemiology Study by Rajesh Pandav, Gerda Fillenbaum, Graham Ratcliff D, Hiroko Dodge, Mary Ganguli MD; Journal of the American Geriatrics Society, Volume 50, Issue 3, pages 554–561, March 2002
- Revealing a hidden problem. An evaluation of a community dementia case-finding program from the Indian 10/66 dementia research network by Shaji, K. S., Arun Kishore, N. R., Lal, K. P. and Prince, M. (2002), International Journal of Geriatric Psychiatry, 17: 222–225. doi: 10.1002/gps.553
- Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network by Shaji, K. S., Smitha, K., Lal, K. P. and Prince, M. J., International Journal of Geriatric Psychiatry, 18: 1–6. doi: 10.1002/gps.649
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, 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 2016: ‘The Global Impact of Dementia: Improving healthcare for people living with dementia’ was released in September 2016. It reviews research evidence on healthcare elements related to dementia care, and suggests ways to make it better and more efficient. The report 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. This would increase capacity, reduce overall costs, and allow scaling of care. The suggested approach is discussed in detail. . Read about it or download it here: The World Alzheimer Report 2016: Improving healthcare for people living with dementia: Coverage, quality and costs now and in the future .
- The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’ was released in August 2015. It 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 also. The report makes key recommendations for a global framework for action on dementia. It 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. Read about it or download it here: The World Alzheimer Report 2015: ‘The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends’ .
- World Alzheimer Report 2014–Dementia and Risk Reduction: An analysis of protective and modifiable factors was published in 2014 as part of the year’s theme of the World Alzheimer’s Month (the theme was Dementia: Can we reduce the risk?). The report was reissued with minor corrections in October 2014. This report 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 for public health campaigns and disease prevention strategies are included. Read about the world report 2014 or download it: 2014 World Alzheimer Report (PDF file) .
- World Alzheimer’s Month 2013 – Dementia: a journey of caring. September 2013 was observed as the World Alzheimer’s Month. The theme was: Dementia: a journey of caring. This report was launched to coincide with World Alzheimer’s Month. Read about it/ download it The World Alzheimer Report 2013 – Journey of Caring: An analysis of long-term care for dementia .
- World Alzheimer Report 2012: Overcoming the stigma of dementia. This report was released by Alzheimer’s Disease International on 21 September 2012. It 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. It highlights best practices in the field of dementia, and includes recommendations. Check out more details and download links here: World Alzheimer Report 2012 .
- World Alzheimer Report 2011: Benefits of early diagnosis and prevention. This 2011 report shows that there are interventions that are effective in the early stages of dementia. Some of these may be more effective when started earlier. The report says that there is a strong economic argument in favor of earlier diagnosis and timely intervention. The key findings can be read at World Alzheimer Report 2011 ; the page also offers download links: World Alzheimer Report 2011 executive summary (PDF file) and the World Alzheimer Report 2011 full report (PDF file) .
- World Alzheimer report 2010. Thisprovides a comprehensive global picture of the economic impact of Alzheimer’s disease and dementia. It includes estimates (worldwide, and for various regions) of the worldwide cost of dementia. Direct medical costs, direct non-medical costs and costs of informal (family) care are considered for this. Policy recommendations are included. Read about it/ download it: World Alzheimer report 2010 .
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. See the full list or subscribe to the newsletter .
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). Below, find some links to their reports from recent years
- The 2016 Alzheimer’s Disease Facts and Figures is available at this link . Download it here: 2016 Alzheimer’s Disease Facts and Figures . In addition to the usual sections, the 2016 report includes a special report on the personal financial impact of Alzheimer’s on families (USA). It also discusses more on findings from (USA) data on mortality in persons with dementia compared to non-dementia persons.
- The 2015 Alzheimer’s Disease Facts and Figures can be downloaded at: 2015 Alzheimer’s Disease Facts and Figures . In addition to the usual sections, the 2015 report includes a special section on disclosing a diagnosis of Alzheimer’s Disease.
- The 2014 Alzheimer’s Disease Facts and Figures can be downloaded at: 2014 Alzheimer’s Disease Facts and Figures (PDF file) . In addition to the usual sections, the 2014 report includes a special report on women and Alzheimer’s.
- The 2013 Alzheimer’s Disease Facts and Figures can be downloaded at: 2013 Alzheimer’s Disease Facts and Figures (PDF file) .
- The 2012 Alzheimer’s Disease Facts and Figures can be downloaded at: 2012 Alzheimer’s Disease Facts and Figures (PDF file) .
Women and Dementia: A global research review
This report 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. Read about it or download it here: Women and Dementia: A global research review .
Thematic briefs for the First WHO Ministerial Conference on Global Action Against Dementia, March 2015
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 are listed on the WHO page / They can be downloaded: The epidemiology and impact of dementia: current state and future trends , Supporting informal caregivers of people living with dementia , Ensuring a human rights-based approach for people living with dementia , and Dementia: a public health priority .
Government Alzheimer plans
Alzheimer’s Disease International maintains a page for plans at Government Alzheimer plans . Here 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.
Dementia Friendly Communities (DFCs)
Alzheimer’s Disease International has published a short report, Dementia Friendly Communities (DFCs): New domains and global examples . This describes the emergence of Dementia Friendly Communities and the various experiments and strategies related to this.
Dementia in the Asia Pacific Region (2014 report)
Alzheimer’s Disease International published Dementia in the Asia Pacific Region in November 2014, the month when the Asia Pacific Regional Conference 2014 was held in New Delhi, India. This report gives 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. For example, it tells us that the number of people with dementia in the region will increase from 23 million in 2015 to almost 71 million by 2050. Profiles of ADI member associations in this region are also included. Read the report: “Dementia in the Asia Pacific” or download it: Dementia in the Asia Pacific (PDF file) .
World Dementia Council: Statement of Purpose
The World Dementia Council has published a “Statement of Purpose” in May, 2014. View it: Dementia Council publishes statement of purpose .
Nutrition and dementia: A review of available research
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. Read about it/ download it: Nutrition and dementia: A review of available research .
The Global Impact of Dementia 2013-2050
Alzheimer’s Disease International (ADI) has published a policy brief for heads of government. This brief updates the earlier published ADI’s prevalence figures. This brief was released ahead of the first G8 Dementia Summit held in December 2013. It includes data on the current and future impact of dementia world-wide. It also provides recommendations. Read about it/ download it Policy Brief: The Global Impact of Dementia 2013-2050 .
28th International Conference of ADI, April 2013, Taipei (Dementia: Action for Global Change)
ADI partnered with TADA Chinese Taipei to host the 28th International Conference of Alzheimer’s Disease International in Taipei from 18 to 20 April 2013. The conference heading was Dementia: Action for Global Change. Read about the ADI 2013 conference here . The presentations are available here: 28th International Conference of ADI Presentations .
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) . This is a standard, much-quoted landmark report.
National Dementia Strategy (England, Wales, Northern Ireland)
Information about these national dementia strategies and related download links are available here: Information on National Dementia Strategies in England, Wales and Northern Ireland .
National Plan to Address Alzheimer’s Disease(USA)
USA has released a national plan for Alzheimer’s Disease and related disorders. This plan is available at this link (PDF download link also available): National Plan to Address Alzheimer’s Disease(USA) .
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 (the page includes an FAQ on the new guidelines, and has download links for the guidelines). These revised guidelines recognize three stages of AD. They propose biomarkers for preclinical Alzheimer’s Disease, Mild Cognitive Impairement (MCI), and Alzheimer’s Disease. Diagnostic criteria are provided for AD. All-cause dementia is also defined (not just AD).
The Nun Study is a longitudinal study of aging and Alzheimer’s disease. It is 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
Page/ post last updated on: October 6, 2016