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PL1. Dementia as a policy priority

Detailed programme, abstracts and presentations

PL1.1. Policy and research priorities of the WYLD (World Young Leaders in Dementia) network

LEIST Anja

Université de Luxembourg, Luxembourg, Luxembourg

The World Young Leaders in Dementia (WYLD) is a growing network of young professionals in the field of dementia across the world. Its founding members were selected in 2014 by the UK Science and Innovation Network in Canada, the United States, Japan, and together with JPND Europe, across the EU countries, in order to support the ongoing Global Action Against Dementia following the G8 Dementia Summit in 2013. Since then, the worldwide network has formed, and its membership now represents 29 countries across all six continents.

WYLD is Associate Member of the World Dementia Council since 2016, and contributes to its ongoing work by participating in the Council’s Global Teams and international efforts. Our core activities are to facilitate professional careers in dementia by promoting training, mentorship, and career opportunities. We contribute to international scientific and policy efforts by consulting on draft dementia strategies and publications, support national and global dementia projects, and raise awareness of dementia in young people.

WYLD’s mission is to build capacity and capability in the global research and care workforce, and make dementia a public health priority. We aim at giving emerging leaders in dementia a voice in the global policy space to bring fresh, creative thinking and facilitate innovative dementia solutions for care and cure. We believe in the value of diversity in tackling the challenges of dementia.

Although our members are involved in a broad set of activities in dementia, some priorities have emerged. On the local level across many countries, we plan and realize Dementia Inclusive (Dementia Friendly) initiatives, raise awareness of social inequalities in dementia, and educate on dementia. One international outcome of this priority is the comparative evaluation of dementia-friendly symbols. Further WYLD priorities are open and collaborative research, new technologies, and improving the quality of care across countries.

PL1.2. Dementia as a health and social priority in Spain

 

PL1.3. The European Joint Action on Dementia: Identifying and sharing good practices across Europe

HUGGINS Geoff

Scottish Government, Edinburgh, United Kingdom

Act on Dementia is an EU Joint Action which began in March 2016. Its aim is to promote collaborative actions among Member States to improve the lives of people living with dementia and their carers. 

Evidence reviews and reports on diagnosis and post diagnostic support, crisis and care coordination, quality of residential care and dementia friendly communities have been completed and can be found at www.actondementia.eu

Work packages are now testing best practices in pilot sites across Europe, looking at de-stigmatising dementia in primary care, trialling telemedicine systems; enhancing the ways in which we identify and deal with the signs of stress and distress in patients with dementia and support people before, during and after a diagnosis of dementia; how to personalise care in residential settings and improve care in the last days of life.  We are also testing evidence around dementia friendly communities in a variety of settings.

Next autumn we will hold our final conference to bring together and share the lessons learned.   

PL1.4. Prioritising dementia internationally - the WHO Global Action Plan on Dementia and the Global Dementia Observatory

CHISHOLM Dan, FREEL Stefanie, DUA Tarun

WHO Europe, Copenhagen, Denmark

In May 2017, theGlobal action plan on the public response to dementia 2017-2025was adopted at the World Health Organization’s (WHO) Seventieth World Health Assembly (WHA) in Geneva, Switzerland, representing an international commitment to improving the lives of people with dementia, their carers and families. The Action Plan comprises 7 action areas, each with identified targets and activities for Member States, Partners and the Secretariat: dementia as a public health priority; dementia awareness and friendliness; dementia risk reduction; dementia diagnosis, treatment and care; support for dementia carers and families; information systems for dementia; dementia research and innovation. 

A series of accompanying tools, initiatives and guidance materials have been developed in order to support the realization of these objectives in and across Member States, including a policy guidance manual, a dementia-friendly toolkit, iSupport (an e-health solution for caregivers of people with dementia), and the Global Dementia Observatory.  This presentation will provide an overview of the primary functions of these tools, elucidate how they mutually contribute towards the goals of the dementia global action plan, and describe how they are being used in and across countries of the WHO European Region.

PL1.5. Real world data supporting regulatory and health technology assessments: the findings of the ROADMAP projects

GALLACHER John1, BOUVY Jacoline2, DE REYDET DE VULPILLIERES Frédéric3, DÍAZ Carlos4, LEVITCHI Mihaela5, REED Catherine6, VAN DER LEI Johan7

1University of Oxford, Oxford, United Kingdom, 2NICE, London, 3Novartis, Switzerland, 4SYNAPSE, Spain, 5Biogen, United States, 6Lilly, United Kingdom, 7Erasmus University, Netherlands

ROADMAP is a public-private partnership to evaluate the usability of multiple data sources, including real-world evidence (RWE), in the decision-making process for new treatments in Alzheimer’s disease (AD), and to advance concepts in disease and pharmacoeconomic modeling. ROADMAP will identify key disease and patient outcomes for stakeholders to make informed funding and treatment decisions, deliver data integration methods and standards, and develop conceptual cost-effectiveness and disease models designed in part to assess whether early treatment provides long-term benefit. ROADMAP provides a stakeholder consensus approach to optimizing patient and societal benefit from new AD treatments.  Initial findings from ROADMAP on the accessibility of real world data, its utility for disease modeling and policy formation will be discussed.

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Last Updated: Wednesday 19 September 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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