In this first of a two-part blog series, DY Suharya, Regional Director for Asia Pacific, discusses ADI’s recent involvement in the Civil Society 7 (C7) Working Group for Global Health.
As ADI prepares for the G7 Summit, taking place from 19-21 May in Hiroshima, Japan, DY emphasises the crucial role of incorporating lived experiences in high-level decision making and details the measures taken to position dementia as a global health priority leading up to the G7 Summit.
When I learned that ADI was invited to join the Civil Society 7 (C7) Working Group for Global Health representing Universal Health Coverage, I was both elated and humbled.
Opportunities such as this present the chance to make a meaningful impact on the lives of people living with dementia and their carers. It allows us to influence the development of policies and initiatives that directly address the needs and challenges faced by the global dementia community.
Furthermore, it offers a platform to raise awareness, reduce stigma and promote understanding of dementia on a global scale, ultimately contributing to a more inclusive and supportive society.
Lived experience and high-level decision making
An essential aspect of high-level decision making is the inclusion of individuals with lived experience and those most affected by dementia. Their unique insights and first-hand knowledge of the challenges faced by people living with dementia and their carers provide invaluable context and direction for policy decisions.
In response to our global attitudes survey on dementia for the World Alzheimer Report 2019, many respondents living with dementia said they had felt ‘ignored’ and ‘ostracised’ in their social lives due to having dementia, with many sharing that they were ‘no longer getting invited to social gatherings’. When people living with dementia are able to have a say in the policies that affect them most, they can bring attention to the social stigma and discrimination that still exists around dementia and impacts them directly. This can then hopefully lead to fostering a more meaningful, inclusive and empathetic approach to policy development.
Their input also allows others to understand the reality of living with dementia, as well as highlight gaps in care and support services, and identify practical solutions to improve the quality of life for all affected.
Involving people living with dementia and their carers in high-level decision making can also lead to the creation of policies that are more relevant, effective and sustainable. Their direct involvement not only ensures that their needs are addressed but also promotes a sense of ownership and empowerment within the dementia community.
Making dementia a global health priority
The C7 is made up of representatives from non-governmental organisations who advocate for the concerns and priorities of communities worldwide. As an official Engagement Group of the Group of 7 (G7), the C7 plays a significant role in representing international civil society during the annual G7 summit.
The G7 is an informal forum for political leaders from Canada, France, Germany, Great Britain, Italy, Japan and the United States, who gather to discuss global issues and coordinate their decisions. As part of this process, the Engagement Groups are responsible for organising their own communication and advocacy efforts, as well as drawing up policy recommendations and demands for the G7 in the form of the C7 Communiqué.
Since the beginning of 2023, ADI has met with other members of the Global Health Working Group every two weeks to discuss the details and key aspects for consideration within the official C7 Communiqué, which is made up of policy recommendations from six working groups: Climate and Environmental Justice, Economic Justice and Transformation, Nuclear Disarmament, Open and Resilient Societies, Humanitarian Assistance and Conflict and Global Health Working Group.
Our member associations in the Asia Pacific region have also played a part in the discussions with the C7, with Noriyo Washizu of Alzheimer’s Association Japan and Datin Jacqueline Wong of demensia Brunei in the Universal Health Coverage and Global Health Architecture sub-working groups respectively.
First steps of success
We were pleased to learn on 10 April that people living with dementia would be included within the recommendations of the Communiqué. Dementia is often grouped with other non-communicable diseases, which can mean that the unique needs and aspects for consideration around dementia are left out of targeted health initiatives and high-level decisions.
These recommendations emphasise the delivery of person-centred, community-led, and gender-transformative Universal Health Coverage (UHC), as well as the importance of strengthening primary health care by investing in and enhancing person-centred care. By integrating dementia into rights-based and person-centred approaches to care, we can work towards a more inclusive and equitable global health landscape.
Two days later on 12 April, I had the honour of representing ADI and the Universal Health Coverage (UHC) sub group, from the Global Health Working Group.
During this time, I expressed seven key points from civil society, urging the G7 to boost resources and investments in low- and middle-income countries for UHC. Our focus was on primary health care and the need to recommit to ending HIV, TB, malaria, as well as non-communicable diseases and neglected tropical diseases, all of which are crucial for achieving UHC.
Additionally, we emphasised the importance of involving vulnerable and marginalised populations, including those with lived experiences of physical and mental health conditions; ageing, dementia and other diseases, to ensure that UHC is person-centred, community-driven and promotes gender equality.
On 13 April 2023, a few members of the C7 met with Japan’s Prime Minister, Fumio Kishida, in Tokyo, Japan, to deliver the C7 Communiqué ahead of the C7 Summit, which took place the following day. Two days later, in Hiroshima, Japan, the Communiqué was delivered to G7 representatives for discussion and consideration, setting the stage for the G7 policy agenda ahead of the Gt7 Summit in May.
Subsequently, ADI CEO Paola Barbarino, Deputy CEO Chris Lynch and Noriyo will be attending a special dementia symposium on 14 May.
This event, held alongside the G7 Health Ministers Meeting in Nagasaki, Japan, will focus on fostering international collaboration for advancing dementia measures in a new era, emphasising inclusion and risk reduction innovation. The symposium is co-hosted by the Japanese Ministry of Health and Welfare, the World Dementia Council and the Health Global Policy Institute Japan, and promises to be a significant opportunity for dialogue and progress in the field of dementia care and policy.
Next steps towards progress
I eagerly await working further with the C7 and G7 and seeing how these recommendations come to fruition. There is still a long road to go but this is an important and significant step going forward.
Together, we can drive change and ensure that the voices of people living with dementia and their carers are not only heard but also integrated into the fabric of global health policy-making. By doing so, we can make strides towards a more inclusive, equitable and compassionate world for everyone affected by dementia.