On 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).
Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025.
Dementia is one of the most significant global health and social crises in the 21st century. 50 million people are currently living with dementia worldwide, and this figure is expected to reach 152 million by 2050. Dementia is also the 7th leading cause of death globally and, this year, will become a trillion-dollar disease.
Funded national plans remain the most effective way to improve the lives of people living with dementia and their families. The first target of the WHO Global action plan is for 75% of their 194 Member States to have developed or updated national policies, strategies, plans or frameworks for dementia by 2025. However, as it stands, only 27 Member States have a national plan.
In light of this huge discrepancy, ADI’s new report declares that world governments remain too slow at tackling the dementia epidemic. ADI calls to action governments to commit to developing national plans and to devote funding to plans to tackle dementia.
Not only did ADI’s side-event to the WHA give this epidemic an important global platform, but it also facilitated a diverse group of panellists and audience members from around the world to share experiences, to learn, and to inspire mobilisation for the creation of more national plans. In the words of Dr Shekhar Saxena, Director of the Department of Mental Health and Substance Abuse (MSD) at the WHO, “Progress can only happen when there is close collaboration”.
We were honoured to be joined by an expert panel of speakers who presented on the experience and effect of dementia in their country, creating a national plan and targets for the future:
* Paola Barbarino, CEO of Alzheimer’s Disease International, who chaired the session
* Dr Shekhar Saxena, Director of the Department of Mental Health and Substance Abuse (MSD) at World Health Organization’s Headquarters
* Mr Herbert Barnard, Director of International Affairs at the Ministry of Health, Welfare and Sport representing the Netherlands
* Mrs Rie Sato, Deputy Director of the General Affairs Division & Office for Dementia Policy in the Health and Welfare Bureau for the Elderly of the Ministry of Health, Labour and Welfare of Japan
* Dr Neil Squires, Director of Global Public Health representing the UK
* Adjunct Prof Debra Thoms, Department of Health Chief Nurse and Midwifery Officer representing Australia
* Ms Kate Swaffer, CEO and co-founder of Dementia Alliance International, and activist living with dementia.
The event was also supported by a number of leading student groups, including the University of Southern California (USC) and the International Pharmaceutical Students’ Federation (IPSF), amongst others. We are indebted to them for their help in the planning and delivery of the event and also for capturing meetings notes from which this blog has been generated.
Some of the key messages captured from the students’ notes and blogs:
Dr. Saxena focused on three important points: Integration of dementia into the larger plan of General Program of Work for the next five years from 2019-23 at WHO; supporting country capacity building through the launch of WHO’s “Towards a Dementia Plan”; and harnessing the power of collaboration through the mandate to work with civil society. (Maunil Desai, USC)
Towards a Dementia Plan: A WHO guide which was unveiled by Dr. Saxena at the event, is a welcomed document which aims to assist governments, civil society and others to create an effective dementia action plan. It sets out steps and methods to prepare for, develop and implement plans, including identifying priorities, stakeholder approval and allocating budget.
The second panellist, Mr Herbert Barnard, mentioned a challenge that dementia poses in the Netherlands; where many people remain undiagnosed, and many live alone.
Dr Neil Squires described how in the UK, dementia is something that is greatly feared, and the UK must work to tackle dementia’s damaging stigma. He highlighted that the primary issue is not public awareness, as this is largely good, but awareness about risk reduction factors, which is comparatively very poor. He recommended an increase in dementia-friendly initiatives but concluded that dementia risk reduction and prevention is the key area at which the UK must direct its efforts (Adapted from minutes taken by IFPS).
The third panellist, Mrs Rie Sato from Japan, introduced the Japanese New Orange Plan, which promotes a dignified way of life for patients, close to their families. Ms Sato emphasised the importance of prioritising the standpoint of patients. She advised her colleagues to take stories of patients as an inspiration for policies (University of Groningen).
Next, Adjunct Prof Debra Thoms described the coordination and cooperation needed between the eight federal governments of Australia to deliver their National Framework for Action on Dementia. Prof Thoms also described how the quality of care can be improved through the accreditation of health workers.
As the final panellist, Kate Swaffer shared her views on the importance of national plans as a person living with dementia.
[She] praised the national plans other countries put forward, but implored all stakeholders to consider people living with dementia as people with acquired disabilities. She also recognised the fact that women are disproportionately affected by dementia, and appealed for implementation of risk reduction plans, dementia-friendly environments and increased cooperation and collaboration. She urged countries to share their successes and failures and learn from each other’s experiences. (Maunil Desai, USC).
A short discussion then took place, in which a Russian representative described how Russia has seen a dramatic improvement in the provision of dementia care in recent years. The Russian government are implementing interventions on a local level including a public awareness campaign and a new research centre.
Overall, the key message to take away from the panellists was:
Action is necessary. All speakers agreed on the importance of respectful and dignified dementia friendly societies, the improvement of care for dementia patients, research into dementia, global collaboration and collaboration with civil society (University of Groningen).
As well as the understanding of the need to increase mobilisation and collaboration to create more national dementia plans, Maunil Desai from USC drew attention to the limited input of viewpoints from LMICs. Desai highlighted that:
Dementia, along with mental health disorders are routinely ignored despite considerable economic costs and increased morbidity, and receive low attention in many Low and Middle-Income Countries (LMICs). Due to time constraints, the event did not include questions from civil society, which would have allowed additional opportunity to explore a broader range of audience perspectives to further enrich the discussion.
To conclude, ADI’s CEO Paola Barbarino acknowledged that “We have a huge challenge ahead of us, which would see us need at least 15 new plans a year to hit the 2025 target.”
She praised the timely publication of Towards a dementia plan: a WHO guide as a way to facilitate the effective creation of new national plans, and to support the advocacy efforts of dementia organisations worldwide. It is hoped that this will be a useful tool for governments and civil society alike.
What remains imperative is that “Governments must act now as national plans take time to develop and set in place and are essential in achieving tangible actions for the benefit of people with dementia and their families and care partners who don’t have time to wait.”
We are delighted at the success of the side-event, and thank the students once again for the time and effort they gave to both help us facilitate it and to write up these considered reports.