25 years of research

10/66 Dementia Research Group

‘10/66's findings provide evidence to help us influence the state's health policy.’ Amit Dias, 10/66 researcher in Goa, India, 2002

In 1998, less than 10% of all population-based research into dementia had been directed towards the 66% of people with dementia who lived in developing countries. These figures acted as inspiration for the naming of the 10/66 Dementia Research Group. The group was formed of a collection of researchers who linked together to try to redress this imbalance, encouraging active collaboration between research groups in different developing countries and between developed and developing countries.

The group, which is affiliated to ADI, is co-ordinated through Prof Martin Prince of the Institute of Psychiatry at King’s College London, UK. The main aims of the group are to quantify the prevalence and incidence of dementia in less-studied countries, learn about the causes of dementia, describe care arrangements for people with dementia, quantify the impact of providing care on caregivers and encourage the development of appropriate support services and evaluate their effectiveness.

The first meeting of the 10/66 Dementia Research Group took place during ADI’s annual International Conference in India in 1998. During this meeting, it was decided that work should begin on two small-scale, achievable pilot study designs. Collaborative research project proposals were developed for India and Sri Lanka, Africa, Latin America and the Caribbean, and China and South East Asia.

By 2000, around 90 researchers in 28 centres worldwide had been trained in dementia diagnosis and clinical practice with carer assessment measures being translated into five languages. The 10/66 Dementia Research Group pilot studies were a huge collaborative effort involving over 700 people with dementia.

In 2002, funding for five population-based studies was received from a number of sources with the studies taking place in Brazil, China, Cuba, the Dominican Republic and India. During this year the 10/66 Dementia Research Group also ran two workshops based on their work during ADI’s annual International Conference in Barcelona, Spain.

In 2003, the group had their first article published in The Lancet medical journal. The article described the study to develop culturally and educationally sensitive instruments for diagnosing dementia. In 2005, the group, spearheaded by Cleusa Ferri, reported, once again in The Lancet, on the global prevalence of dementia. This was important for ADI and its members in lobbying the WHO and national governments.

The 10/66 Dementia Research Group was awarded a grant from the Wellcome Trust in 2006 to further their population-based studies in Latin America and China. The study entitled Cardiovascular risk, nutrition and dementia incidence in mixed populations undergoing rapid health transition in Latin America and China relied upon the participation of the 10/66 centres in Argentina, China, Cuba, the Dominican Republic, Mexico, Peru and Venezuela.

By 2008, the group’s studies on intervention had taken place in China, the Dominican Republic, India, Peru and Russia and were believed to be the first to directly assess the quality of life of people with dementia. As a result of these findings the 10/66 Group produced a Helping Carers to Care intervention package, which could be delivered by community health workers in low-income countries to help people with dementia and their families. This intervention consists of the family receiving five short, weekly visits from a health care worker, during which they receive basic education about dementia and specific training on managing problem behaviour.

The findings of the 10/66 Dementia Research Group are made available in an easy to understand and accessible format through ADI’s annual International Conferences, the 10/66 Dementia Research Group website, newsletters, policy briefings and press releases. This acts as a research network for ADI members to use to raise public awareness and promote the development of policies and services to support people with dementia in developing countries.

Supporting research

‘It goes without saying that winning the award was one of the most humbling moments of my life, and I appreciate ADI and FMA seeing fit to recognise and support psychosocial research that’s being done around the world.’ Danny George, USA, 2009

In 1993, ADI issued the results of the first dementia prevalence survey of its member countries, giving an early indication of the situation faced by the global dementia movement.

In 2008, ADI announced that they would be running the first award for psychosocial interventions alongside Fondation Médéric Alzheimer, a non-profit organisation based in France, dedicated to helping people with Alzheimer’s disease and their carers. The aim of the award was to promote psychosocial research and the application of best practice. The winner of the award was announced during the ADI conference in 2009. Mary Mittelman was granted the award for her project Translating the NYU Caregiver Intervention from Research to Practice Settings. An additional award for the most promising intervention was presented to Danny George for his Intergenerational Volunteering study. The second award was announced later in 2009.

On World Alzheimer’s Day 2009, ADI released the first of two reports, revealing the most accurate global figures to date of the number of people with dementia worldwide. The World Alzheimer Report 2009 also looked at levels of mortality, disability, carer strain and dependency across the world, concluding by offering recommendations for government action in an attempt to improve the services available for people with dementia and their carers.

In 2010, ADI released the second report, highlighting the global cost of dementia. ADI and its member associations in all parts of the world will use the two reports to advocate for better services for people with dementia on a national and international level.

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