2023 Den Haag gezamenlijke verklaring over dementie

Diplomatieke verklaring | 02-10-2023

Wij, de regeringsvertegenwoordigers die deelnemen aan de conferentie 'Defeating Dementia'

in Den Haag, Nederland, op 2 oktober 2023

Deze verklaring is alleen in het Engels beschikbaar.

Taking into account

• That worldwide more than 55 million people live with dementia.
• That dementia is a chronic and progressive neurocognitive condition among older people worldwide, having a significant impact not only on individuals but also on their carers, families, communities and societies.
• That dementia accounts for 11.9% of the years lived with disability due to a noncommunicable disease.
• That in 2019, Alzheimer's disease and other forms of dementia ranked as the 7th leading cause of death.
• That 65% of people dying of dementia-related deaths are women.
• That adult dementia may develop at a relatively early age leading to unique challenges for the person affected, relatives and friends.
• That dementia is experienced differently by different individuals and that within each country there will be groups at greater risk of having dementia or facing additional challenges in accessing dementia support and care.
• That dementia leads to increased costs for governments, communities, families and individuals, and to loss in productivity for economies. In 2019, dementia cost economies globally 1.3 trillion US dollars; approximately 50% of these costs are attributable to care provided by family/friend caregivers.
• That Low- and Middle-Income Countries (LMIC’s) are even more affected by dementia than high-income countries, as the increase in dementia cases in terms of percentage is much higher in LMIC’s.

Referring to

• The G8 dementia summit in London on 11 December 2013, in which the G8 ministers agreed to:
  • set an ambition to identify a cure, or a disease-modifying therapy, for dementia by 2025;
  • significantly increase the amount spent on dementia research;
  • increase the number of people involved in clinical trials and studies on dementia;
  • establish a new global envoy for dementia innovation, following in the footsteps of global envoys on HIV and Aids and on climate change;
  • develop an international action plan for research;
  • share information and data from dementia research studies across the G8 countries to work together and get the best return on investment in research;
  • encourage open access to all publicly funded dementia research to make data and results available for further research as quickly as possible.
• The appointment of Dr Dennis Gillings CBE as Global Dementia Envoy and the subsequent creation of the World Dementia Council (WDC), with the task to help to achieve the G8-goals.
• The first WHO ministerial conference on global action against dementia in 2015. This conference fostered awareness of the public health and economic challenges posed by dementia, a better understanding of the roles and responsibilities of Member States and stakeholders, and led to a Call for Action supported by the conference participants.
• The unanimous adoption by the World Health Assembly (WHA) of the Global Action Plan on the public health response to dementia in May 2017, setting an eight-year framework through which the organisation’s 194 Member States could improve the lives of people with dementia, their carers, their families, and communities by 2025, with seven defined action areas:
  • making dementia a public health priority through policy and legislation;
  • raising dementia awareness and inclusion;
  • reducing the risk of dementia;
  • improving dementia diagnosis, treatment and care;
  • developing support and services for dementia carers;
  • strengthening health information systems for dementia; and
  • fostering research and innovative technologies.
• The consecutive WDC Global Dialogues and Summits, latest the 2023 Summit ‘Dementia in a new era’, highlighting the progress and the challenges on reaching the G8 goals from 2013.
• The G7 Health ministers meeting on Dementia in Nagasaki, Japan, on 14 May 2023, underlining the urgency to take action on all aspects of dementia, not in the least the need to develop and implement strategies and action plans, adopting integrated approaches on dementia in line with WHO’s Global Action Plan on dementia. To promote the development of age-friendly and dementia-inclusive communities with multi-stakeholder’s initiative and participation of individuals with dementia and their caregivers. And to make efforts to accelerate R&D to improve health outcomes with a total package of prevention, risk reduction, early detection, diagnosis and treatment of dementia.
• The consecutive progress reports from WHO and Alzheimer Disease International on the progress towards the targets of the WHO Global Action Plan on Dementia. Findings in the latest Alzheimer’s Disease International (ADI) report ‘From Plan to Impact VI’, May 2023, continue to demonstrate that targets are not being met by the Member States quickly enough.

Wishing to emphasise the importance of

Worldwide action on the challenges dementia poses to the entire society, which actions include:

• enabling research into all aspects of dementia, including, but not limited to, finding a cure in the future, ways of prevention, risk reduction and improvement of care;
• promoting the best possible quality of life for a person with dementia, respecting the human rights of all people with dementia, as stipulated in the United Nations Convention on the Rights of People with Disabilities;
• providing high-quality support and care for both people living with dementia and family/friend caregivers, referring to the key principles of high-quality dementia care, set by the World Dementia Council in May 2017 and attached to this statement;
• the creation of dementia-inclusive communities, reducing stigma and prejudice towards people living with dementia;
• public awareness of dementia and its impacts, including risk and protective factors, especially for higher-risk populations;
• advocacy for people living with dementia, e.g. by national and international Alzheimer organisations, people living with dementia, family/friend caregivers.

Have discussed the following

Research

• To promote and support international collaboration in research into all aspects of dementia, bilaterally and multilaterally, e.g. by participating in the worldwide initiative EU Joint Programme – Neurodegenerative Disease Research (JPND). This research should lead to disease modifying treatments and prevention and risk reduction of dementia, to the development of sustainable, high-quality interventions, support and care for those living with dementia and, ultimately, to cures for dementia.
• To emphasise the importance of a significant global increase in dedicated research investments and to call on all countries to accelerate the pace of this increase in efforts to prevent dementia and improve the lives of people living with dementia and their caregivers.

Global collaboration

• To set up, in close collaboration with WDC, WHO and ADI, a worldwide group of governmental experts on dementia and to promote and to contribute to the activities of this group. The aims of this group are to provide a solid foundation to ensure that dementia remains a global priority and to assist governments in reaching the G8 and WHO goals on dementia. This group of government leaders will do this through the exchange of best practices on dementia policies and the interchange of policy, practice and research ideas.
• To further develop ways to assist LMIC’s in dealing with the challenges of dementia e.g. by twinning programmes, in close collaboration with WDC, WHO, ADI and the global group of governmental experts on dementia.
• To propose the extension of the WHO Global Action Plan on the public health response to dementia with a further five years, until 2030, during the 77^th World Health Assembly, to provide the opportunity for more Member States to reach the goals of the Global Action Plan, in line with the Sustainable Development Goals 2030.

Inclusion

• To promote and support actions to raise awareness and general knowledge on dementia, both on a national and international level, and to create a dementia inclusive society.
• To recognise persons living with dementia as valued members of society, who can and should participate in society and meaningful activities, given the added value they have for society.
• To build communities and services that enable people living with dementia to take and keep their role in society.

Support and care

• To provide person-centred, high quality dementia support and care, according to the key principles of high-quality dementia care, annex to this statement.

Bijlage

Principles of High-Quality Care and Support

set by the World Dementia Council in May 2017

To ensure the right to high-quality care and support for people living with dementia and their care partners, the following principles should guide the provision of care and support in all countries:

• Individuals receive a timely and accurate diagnosis – and are told of that diagnosis and its realistic consequences. This is the gateway to making informed personal life decisions and decisions about medical treatment.

• People living with dementia are entitled to respect and dignity with full recognition that dementia in no way diminishes the personhood of the individual who has it. 

• Communities are inclusive of people living with dementia, thus ensuring the opportunity for participation and engagement by those living with dementia and empowering them to remain in the community as long as possible.

• Care is person- and relationship-centered. Person-centered care is a philosophy of care based on knowing the person, developing and maintaining authentic relationships, providing a supportive, culturally sensitive environment that includes opportunities for meaningful engagement, and recognizing the person’s reality and individual needs. 

• The provision of person-centered care is based on continuous assessment and individualized care planning designed to maximize independence, develop effective strategies for communication, minimize behavioral and psychological symptoms, and identify available support for people living with dementia and their care partners.

• People living with dementia and their care partners are involved as active participants in care planning and decision making and have access to information and support throughout the continuum of their disease from diagnosis to end of life. 

• Medical and care professionals have adequate knowledge of all aspects of dementia and work across medical disciplines to ensure a holistic approach to disease management. This will ensure that people living with dementia are provided appropriate medical care, psychosocial care, and disability support – for both their dementia and their co-morbid conditions – throughout the course of the disease.

• Care coordination and collaboration occurs between all care providers, including medical and allied health and social care professionals, health systems, family care partners, paid caregivers, community services, and volunteers. Governments, non-governmental organizations (NGOs), and patient advocacy groups have an important role in building collaboration among care providers and in monitoring and evaluating the care and support provided.