SOU, Alm.del - 2013-14 - Bilag 142: Materiale fra Nationalt Videnscenter for Demens som opfølgning på mødet med udvalget den 6/2-14

G8 DEMENTIA SUMMIT COMMUNIQUEIntroduction1. We, the G8 Health Ministers, met at the G8 Dementia Summit in London on 11December 2013 to discuss how to shape an effective international response to dementia.2.We acknowledge the on-going work occurring in our countries and globally to identifydementia as a major disease burden and to address issues related to ageing and mentalhealth, including the World Health Organisation’s 2012 report,Dementia – A PublicHealth Priority.Building upon the significant research collaborations that exist betweenour countries and our multilateral partners will strengthen our efforts and allow us tobetter meet the challenges that dementia presents society.3. We recognise that dementia is not a normal part of ageing. It is a condition that impairsthe cognitive brain functions of memory, language, perception and thought and whichinterferes significantly with the ability to maintain the activities of daily living. We alsoacknowledge that dementia affects more than 35 million people worldwide, a numberthat is expected to almost double every 20 years.4. We note the socio-economic impact of dementia globally. Seventy per cent of theestimated annual world-wide cost of US$604 billion is spent on informal, social and directmedical care. Yet nearly 60 per cent of people with dementia live in low and middleincome countries so the economic challenge will intensify as life expectancy increasesacross the globe.5. These costs are expected to increase significantly if therapies to prevent dementia andimprove care and treatment are not developed and implemented. We recognise theneed to strengthen efforts to stimulate and harness innovation and to catalyseinvestment at the global level. Recognising the division of health responsibilitiesbetween national and sub-national levels of government that is unique to federatedstates;Research and Innovation6. We recognise that through research, knowledge translation and care, we can reduce theincreasing impact of dementia on society and we commend all efforts in the developmentof breakthroughs to prevent, delay, treat or stop dementia. We want to ensure that wesupport the research likely to have the greatest impact and which addresses the areas ofgreatest need. We agree to work together, to share information about the research wefund, and to identify strategic priority areas, including sharing initiatives for big data, forcollaboration and cooperation. We understand the importance of using existing evidenceand knowledge to inform decision-making, as well as creating better and more robustmonitoring and evaluation evidence.

7. To realise these ambitions, we must draw on the existing research infrastructure.Therefore, we welcome the offer of research funders including NIH, MRC, CIHR, andAVIESAN to act as co-convenors, building on the existing work and capability offered atthe European level (through the JPND, the Innovative Medicines Initiative and theHorizon 2020 initiative) to identify priorities and to develop a co-ordinated internationalaction plan for research which accounts for the current state of the science, identifiesgaps and opportunities, and lays out a plan for working together to address them.8. Furthermore, we commit to:-•The ambition to identify a cure or a disease-modifying therapy for dementia by 2025and to increase collectively and significantly the amount of funding for dementiaresearch to reach that goal. We will report biennially on expenditure on publiclyfunded national dementia research and related research infrastructure; and we willincrease the number of people in dementia related research studies.•Encourage open access, where possible, to all publicly funded dementia researchand to make the data and results available for further research as quickly as possiblewhile protecting the privacy of individuals and respecting the political and legalframeworks of the countries in which the research is conducted;

9. Although we embrace the need to increase spending on dementia research, this will notbe sufficient on its own. Mutual efforts to stimulate and harness innovation at the globallevel therefore need to be strengthened. Consequently, we call for greater innovation toimprove the quality of life for people with dementia and their carers while reducing theemotional and financial burden. We therefore welcome the UK’s decision to appoint aglobal Dementia Innovation Envoy to draw together international expertise to stimulateinnovation and to co-ordinate international efforts to attract new sources of finance,including exploring the possibility of developing a private and philanthropic fund tosupport global dementia innovation.10. We acknowledge the need to attract new investors and the need to support thedisruptive technology and innovation in companies and academia that is currently beingpostponed or shelved because of the technical and financial threat of failure. Werecognise that both public and industry-led research and capacity must be encouraged toenable new approaches to be identified and developed. We must explore all avenues ofinnovation. Priorities for investment include:• Research to elucidate the mechanisms underlying the initiation and progressionof neurodegeneration as a basis for identifying new targets for therapeuticdevelopment;• Prevention of dementia;• Making timely diagnosis and early intervention feasible, affordable and costeffective;• Facilitating the integration of care and helping individuals and their carers accesscare and social services in their homes and communities; and• Making care homes more responsive to needs.

11. To reduce the impact of dementia on an ageing society, we need to think and actdifferently, and we need to stimulate new investment to help address the currentinnovation gap. We recognise the need to build on existing capabilities and capacities tostimulate innovation across the life science, healthcare, home care, social care, andwellbeing sectors. To this end, we agree to take stock of our current national incentivestructure, working in partnership with the OECD, and consider what changes could bemade to promote and accelerate discovery and research and its transformation intoinnovative and efficient care and services.Leadership, Cross-Sector Partnerships and Knowledge Translation12. We see the G8 dementia summit in London as the start of a process which will allow usto step up our efforts to reduce the human and economic impact of dementia. We arekeen to continue to work together but we also want to engage other countries with asimilarly strong interest in dementia.13. To develop innovation and cross sector partnership efforts, we will hold a series of high-level fora throughout 2014, in partnership with the OECD, WHO, the EuropeanCommission, JPND and civil society, to develop cross sector partnerships andinnovation, focused on:•••Social impact investment – UK-ledNew care and prevention models – Japan-ledAcademia-industry partnerships - Canada and France co-led

14. We will meet again in the United States in February 2015 with other global experts,including WHO and OECD, to review the progress that has been made on our researchagenda.15. The world has been slow to adapt to population ageing and dementia and this continuesto worsen fiscal and societal risks, threatening sustainable growth. We need more dataon prevalence and incidence of dementia, as well as prevention and treatment. As the‘baby boom’ generation of the late 1950s and early 1960s come to care for their ownparents affected by dementia, there is an opportunity to offer greater involvement andsupport. We should explore ways to connect people affected by dementia, particularly tosupport collaborative problem solving.16. Increased age is the greatest predictor of dementia. It has been estimated that delayingdementia onset by 2 years could decrease global disease burden in 2050 by 22.8 millioncases. We therefore recognised that a new approach to delaying and preventingdementia is needed and requires:

17. Dementia is a global challenge and one which is set to intensify. History shows majordiseases can be made manageable, even preventable, with sufficient political will. Wetherefore need to better understand risk factors for dementia in younger generations,identify available options to reduce risk, and develop and implement rigorously designedpublic health programmes. We recognise the importance of taking a comprehensive andcoordinated approach to the prevention of dementia, tailored to national and local needs,and to take prevention measures in the near term based on existing knowledge. We willencourage countries to make dementia a public health priority as their populations growand generations age.18. Responding effectively to dementia requires policy makers across government to worktogether. Governments can also learn from one another. To learn from one another andfacilitate knowledge exchange, we will strive to improve the way in which we sharegovernment policy documents on treatment, services, interventions and research forpeople affected by dementia.Supporting People Affected by Dementia and their Carers19. Depending on its cause, dementia may progress from mild cognitive impairment,including difficulties organising daily life, to significant alterations in personality,disintegration of cognitive functions, loss of self and identity, incontinence, loss ofphysical abilities and finally death. Dementia can be both a contributory factor to, and aprimary cause of death. Progress of the disease and its impact are very distressing forpeople with dementia, their families and carers.20. Dementia is our collective social responsibility. We affirm our commitment to improvingthe lives of people affected by dementia, regardless of nationality, identity, background,culture socioeconomic status, language or religion. Furthermore, we encourage theinvolvement of Indigenous peoples and communities in the development,implementation, and evaluation of dementia policies, plans and programs whereappropriate, while promoting the development and strengthening of capacity at variouslevels and recognising the cultural heritage and traditional knowledge of Indigenouspeoples.21. Dementia requires long term health and social care support. Providing care for thosewith dementia can present challenges for families and carers. We need to provide betterand more concrete measures for improving services and support for people with

dementia and their carers, to improve their quality of life and wellbeing.22. We pledge to disseminate successful approaches to supporting people with dementiaand their carers including:-•••••••••Provision of advice, including on care planning, management and wellness supportAppropriate use of medication, particularly antipsychotics, and delaying and/orreducing secondary complicationsCommunity-based programmes fostering inclusion and improved quality of lifeDelivering services through a continuum of care, including primary careIndividual tailoring of careRealisation of new, ambulant living optionsHelping care homes to meet the needs of people with dementiaAffordable options for care and everyday supportAddressing end of life care

23. Carers themselves are often older adults, mainly women, who may be dealing with theirown health problems. We call for greater social responsibility and innovation to improvethe quality of life for carers and improve care while reducing costs and financial burdenincluding:-••••••••Training for carers, including how to deal with dementia related behavioursImprove the reconciliation of care and career for carersSupport carers in acute situations and crisesLocal and affordable options for care and everyday supportPromote civic engagement and the development of social networksAttract and train community representatives to support people with dementia in socialenvironmentsCreating better and robust evaluation evidenceUsing existing evidence and knowledge

24. Appropriate autonomy and self-determination, including substitute or supported decisionmaking, for people with dementia must be protected and strengthened. Thereforenational and local policies should be in place to ensure appropriate autonomy and self-determination are recognised and protected.Reducing stigma and fear25. Dementia is not a normal part of ageing. As people age, many fear the potential onset ofdementia-related symptoms or a diagnosis of dementia. Negative reactions from family,friends, and professionals can impact a person’s willingness to seek assistance, as wellas their well-being and ability to manage the changes brought about by dementia. Wecommit to improving the understanding of community attitudes towards people withdementia across generations.

26. Responding effectively to dementia requires a response from all sectors of society.Therefore, we call upon all sectors to treat people affected by dementia with dignity andrespect, and to promote various forms of civic engagement on dementia awareness, andto contribute to the prevention of dementia and to improve care and treatment wherethey can.27. Addressing stigma and ensuring that people with dementia are treated with dignity andrespect are critical. We therefore commend the creation of the UN Independent Experton the enjoyment of all human rights by older persons and we ask that the perspective ofolder people affected by dementia is integrated into their work.28. Civil society is also well placed to play a major role in changing public attitudes.Therefore, we agreed to call on civil society to continue and to enhance global efforts toreduce stigma, exclusion and fear.Conclusion29. We will continue our efforts to work together in line with the commitments in thisDeclaration and Communiqué, but we recognise that dementia is an issue which affectspeople in countries throughout the world. Consequently, we encourage all countries andmultilateral organisations to come together and take action to reduce the risk to healthand to economic development which dementia currently presents.