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- Dementia
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- Personal experiences of living with dementia
- 26AEC Copenhagen - a travel diary by Idalina Aguiar, EWGPWD member from Portugal and her daughter Nélida
- Letters to Remember (Ireland)
- Mojca Hladnik and Matjaž Rižnarič (Slovenia)
- Raoul Gröngvist and Milja Ahola (Finland)
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- Ramona Amariei (Romania)
- Paola (Italy)
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- A carer from Spain
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- Stewart Cooper (Luxembourg)
- Roger Newman (UK)
- Policy in Practice
- European Alzheimer's Alliance
- Members
- Alliance activities
- February 2018 "The prevention of Alzheimer’s disease (AD) and dementia"
- December 2017 "Improving the diagnosis of Alzheimer’s disease thanks to European research collaboration"
- June 2017 "Current and future treatment for Alzheimer’s disease and other dementias”
- June 2017 MEP Sirpa Pietikäinen hosts roundtable in European Parliament on Alzheimer’s disease
- December 2016 "Comparing and benchmarking national responses to the dementia challenge"
- September: MEP Ole Christensen praises new Danish national action plan on dementia
- June 2016: “Using the UN Convention on the Rights of Persons with Disabilities (UNCRPD) to support the rights of people living with dementia”
- December 2015: "Dementia, a priority of two EU Presidencies"
- June 2015: “The World Health Organisation and the World Dementia Council and global action on dementia: what role for the European Union?”
- December 2014: “Prevention of Dementia: Why & How”
- February 2014: "The Innovative Medicines Initiative: improving drug discovery for Alzheimer’s disease"
- December 2013: "Comparing and benchmarking national dementia policies"
- July 2013: MEP Werthmann hosts a panel discussion on neurodegenerative diseases in the European Parliament
- June 2013: "Joint Action on Alzheimer Cooperation Valuation in Europe (ALCOVE)"
- February 2013: “Clinical trials on Alzheimer’s disease: update on recent trial results and the new regulatory framework”
- December 2012: “Living with dementia: Learning from the experiences of people with dementia”
- June 2012: "Alzheimer's disease in the new European public health and research programmes"
- February 2012: "IMI in the spotlight" & "Speeding up drug discovery for Alzheimer’s disease: the PharmaCog project"
- December 2011: "Public perceptions of Alzheimer’s disease and the value of diagnosis"
- June 2011: "The Alzheimer Cooperative Valuation in Europe"
- March 2011: "European activities on long-term care: What implications for people with dementia and their carers?"
- December 2010: "The Joint Programming of research in Neurodegenerative Diseases (JPND). What progress so far?"
- June 2010: “Alzheimer’s disease and dementia as a national priority: contrasting approaches by France and the UK”
- September 2009: "European Action on dementia"
- March 2009: "Towards a European Action Plan on Alzheimer's disease"
- December 2008 "The rising cost of dementia"
- September 2008: Launch of Written Declaration
- September 2008: "Current and future treatments for AD"
- MEPs speak out on dementia
- Heinz K. Becker MEP (Austria)
- Nessa Childers (Ireland)
- Jan Andersson (Sweden)
- Tanja Fajon (Slovenia)
- Alojz Peterle (Slovenia)
- Igor Šoltes (Slovenia)
- Patricija Šulin (Slovenia)
- Ivo Vajgl ( Slovenia)
- Dr. Milan Zver (Slovenia)
- Marian Harkin (Ireland)
- Marek Plura (Poland)
- Deirdre Clune (Ireland)
- Dr Miroslav Mikolášik (Slovakia)
- Elena Oana Antonescu (Romania)
- Maria Badia i Cutchet (Spain)
- Heinz Becker (Austria)
- John Bowis (United Kingdom)
- Roberta Angelilli (Italy)
- Frieda Brepoels (Belgium)
- Milan Cabrnoch (Czech Republic)
- Michael Cashman (United Kingdom)
- Nessa Childers (Ireland)
- Ole Christensen (Denmark)
- Brian Crowley (Ireland)
- Joseph Cuschieri (Malta)
- Karl-Heinz Florenz (Germany)
- Françoise Grossetête (France)
- Maria Eleni Koppa (Greece)
- Katalin Levai (Hungary)
- Astrid Lulling (Luxembourg)
- Jan Tadeusz Masiel (Poland)
- Marisa Matias (Portugal)
- Linda McAvan (United Kingdom)
- Claude Moraes (United Kingdom)
- Elisabeth Morin-Chartier (France)
- Marie Panayotopoulos-Cassiotou (Greece)
- Antonyia Parvanova (Bulgaria)
- Alojz Peterle (Slovenia)
- Sirpa Pietikäinen (Finland)
- Frédérique Ries (Belgium)
- Dagmar Roth-Behrendt (Germany)
- Keith Taylor (UK)
- Patrizia Toia (Italy)
- Kathy Sinnott (Ireland)
- Angelika Werthmann (Austria)
- Glenis Willmott (UK)
- Corien Wortmann-Kool (Netherlands)
- Marina Yannakoudakis (UK)
- Anna Záborská (Slovakia)
- Dushana Zdravkova (Bulgaria)
- Past supporters
- European Parliament Elections 2019
- EU Action on Dementia
- 2018 European Parliament Written Question on the dismantling of the Commission Expert Group on Dementia
- 2016 European Parliament Written Declaration
- 2016 Lunch of 2nd Joint Action on Dementia
- 2015 European Parliament Written Declaration
- 2015 Council adopts Luxembourg EU Presidency conclusions
- 2009 Joint Programming (ongoing)
- 2009 European Alzheimer's Initiative (ongoing)
- 2009 European Parliament Written Declaration
- 2008 Council conclusions on combatting Alzheimer's disease
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- Country comparisons
- 2018: Comparision of National Dementia Strategies
- 2017: Standards for Residential Care Facilities
- 2016: Decision making and legal capacity in dementia
- 2015: Is Europe becoming more dementia friendly?
- 2013: The prevalence of dementia in Europe
- Austria
- Belgium
- Bulgaria
- Croatia
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Iceland
- Ireland
- Italy
- Jersey
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- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom (England, Wales and Northern Ireland)
- United Kingdom (Scotland)
- References
- 2013: National policies covering the care and support of people with dementia and their carers
- Austria
- Belgium
- Bulgaria
- Croatia
- Cyprus
- Czech Republic
- Denmark
- Finland
- France
- Germany
- Greece
- Iceland
- Ireland
- Italy
- Jersey
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Sweden
- Switzerland
- Turkey
- United Kingdom (England, Wales and Northern Ireland)
- United Kingdom (Scotland)
- General acknowledgements
- Appendix
- 2012: National Dementia Strategies (diagnosis, treatment and research)
- Austria
- Belgium
- Bulgaria
- Croatia
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Ireland
- Italy
- Jersey
- Latvia
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom (England)
- United Kingdom (Northern Ireland)
- United Kingdom (Scotland)
- United Kingdom (Wales)
- Acknowledgements
- 2011: Restrictions of freedom
- Austria
- Belgium
- Bulgaria
- Croatia
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Iceland
- Ireland
- Italy
- Latvia
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Sweden
- Switzerland
- Turkey
- United Kingdom - England
- United Kingdom - Scotland
- Acknowledgements
- 2010: Legal capacity and proxy decision making
- Austria
- Belgium
- Bulgaria
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Iceland
- Ireland
- Italy
- Latvia
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom - England
- United Kingdom - Scotland
- Acknowledgements
- 2009: Healthcare and decision-making in dementia
- Austria
- Belgium
- Bulgaria
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Iceland
- Ireland
- Italy
- Latvia
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Slovakia
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom - England
- United Kingdom - Scotland
- Acknowledgements
- 2007: Social support systems
- Austria
- Belgium
- Bulgaria
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Hungary
- Iceland
- Ireland
- Italy
- Latvia
- Lithuania
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom - England
- United Kingdom - Scotland
- 2006: Reimbursement of anti-dementia drugs
- 2005: Home care
- Our opinion on ...
- Advance directives
- Anti-dementia drugs
- Involving people with dementia in research through PPI (patient and public involvement)
- Participation of people with dementia in clinical trials
- Policy on collaboration with other organisations
- Disclosure of the diagnosis to people with dementia and carers
- Genetic testing
- The Hague Convention for the International Protection of Adults
- Participation of people with dementia in research
- Stem Cell Research
- Recommendations on how to improve legal rights and protection of people with incapacity
- Glasgow Declaration 2014
- Paris Declaration - 2006
- European Alzheimer's Alliance
- Ethics
- European Dementia Ethics Network
- Definitions and approaches
- Ethical issues in practice
- 2018: Intercultural care and support
- 2017: Dementia as a disability? Implications for ethics, policy and practice
- Preface
- Introduction
- Disability-related terms and definitions
- About disability
- Personhood and the personal experience of disability
- Human rights and opportunities
- Care, support, disability and dementia
- Working towards an inclusive society
- Conclusions
- Recommendations
- Glossary/list of abbreviations
- References
- Acknowledgements
- Appendix – Translations of impairment and disability
- 2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
- Foreword
- Preface
- Introduction
- The new AD definitions and the ethical implications of the way we represent health and disease
- Personal identity and personhood
- Ethical issues linked to diagnosis, healthcare and research
- Broader ethical issues at the level of society
- Conclusion
- Our position
- Glossary of terms and abbreviations
- References
- Appendix 1: Acknowledgements
- Appendix 2: More information about the changing definition of AD
- 2015: Ethical dilemmas faced by professionals providing dementia care in care homes and hospitals
- Foreword
- Introduction
- Caring and coping in ethically challenging situations
- Vignettes and commentaries
- Conclusion
- Building an ethical infrastructure – a message to organisations
- References/reading list
- Acknowledgements
- Appendix 1 – Ethical principles, values and related concepts
- Appendix 2 – Short examples to describe ethical theories
- Appendix 3 – Checklist for reflecting on ethical dilemmas and ethically challenging situations
- 2014: Ethical dilemmas faced by carers and people with dementia
- Foreword
- PART 1 - Introduction
- About ethics
- PART 2 - Ethical dilemmas from the first possible signs of dementia onwards
- The period of uncertainty/not knowing (pre-diagnosis)
- The process of understanding/finding out (diagnosis)
- The initial period of adaptation (shortly after diagnosis)
- Living with dementia (getting on with routine life/adapting to challenges)
- Caring for/receiving care (when increased levels of support are needed)
- The possible transition into a care home (when continued care at home becomes problematic)
- Care for a dignified end of life
- PART 3 - Tackling ethical dilemmas
- Establish and maintain an on-going dialogue involving everyone involved or concerned about the particular issue
- Try to understand the issue and seek additional information if needed
- Try to make sense of people’s needs, wishes and concerns (i.e. what is really important to them or bothering them)
- Consider and evaluate the ethical principles and values at stake in relation to the individuals involved (including yourself) and the specific situa...
- Reflect together on possible outcomes which might be good or bad for different people concerned, bearing in mind their lived experiences
- Take a stance, act accordingly and, bearing in mind that you did your best, try to come to terms with the outcome
- Reflect on the resolution of the dilemma and what you have learnt from the experience
- References
- Acknowledgements
- 2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia
- 2012: The ethical issues linked to restrictions of freedom of people with dementia
- Preface
- Introduction
- Restriction of the freedom to choose one’s residence or place of stay
- Freedom to live in least restrictive environment
- The restriction of the freedom to act according to individual attitudes, values and lifestyle preferences
- The restriction of the freedom to play an active role in society
- Formal acknowledgements and disclaimer
- Appendices
- Glossary
- References
- 2011: Ethics of dementia research
- The dementia ethics research project
- Background, definitions and scope
- Involving people with dementia
- Informed consent to dementia research
- Protecting the wellbeing
- Risk, benefit, burden and paternalism
- Clinical trials
- Epidemiological research
- Genetic research
- Research into end-of-life care
- The donation of brain and other tissue
- Publication and dissemination of research
- Glossary
- Annexes
- References
- 2010: The ethical issues linked to the use of assistive technology in dementia care
- 2009: Advance directives and personhood
- 2008: End-of-Life care for people with dementia
- Database of initiatives for intercultural care and support
- Afro-Caribbean
- Albanian
- Arabic
- Bengali
- Chinese/Cantonese/Mandarin Chinese
- Croatian
- Danish
- English
- Estonian
- Farsi
- Hindi
- Irish
- Italian
- Jewish
- Kurdish/Sorani
- Live-in (migrant) carers
- Minority ethnic groups (in general), BAME/BME
- Polish
- Portuguese
- Punjabi
- Roma, traveller and Bedouin communities
- Russian/former Soviet Union
- Sami
- Serbian
- Sikh
- Somali
- South Asian
- Turkish
- Urdu
- Research
- Clinical Trials Watch
- Value of Knowing
- European Collaboration on Dementia
- Cost of dementia
- The health economical context (Welfare theory)
- Health economic aspects of dementia
- The impact of informal care
- Cost of illness and burden of dementia
- Regional/National cost of illness estimates
- Prognosis to 2030
- Sensitivity analysis
- Other European cost of illness estimates
- Regional Patterns: The societal costs of dementia in Sweden
- Regional patterns: The economic environment of Alzheimer's disease in France
- Regional patterns: Economic environment of Alzheimer’s disease in Mediterranean countries
- Regional patterns: Socio-economic impact of dementia and resourse utilisation in Hungary
- Conclusions and policy implications
- Acknowledgements
- Diagnosis and treatment of dementia
- Prevalence of dementia
- Prevention of dementia
- Psychosocial interventions
- Social Support Systems
- Cost of dementia
- PharmaCog
- Comparative studies
- Understanding dementia research
- Continence care
- Conferences
- The Hague 2019
- Preliminary programme
- Detailed programme and abstracts
- P1. Alzheimer Nederland – Young onset dementia
- P2. Memory clinics and centres
- P3. Needs and experiences of people with dementia and their carers I
- P4. INTERDEM – Technology and human interaction
- P5. Neuronet: European research collaboration in Alzheimer’s disease and beyond
- P6. Awareness and policy campaigns
- P7. Technology
- P8. Socio.economic aspects of dementia
- P9. Alzheimer Nederland – Social innovation
- P10. Post-diagnostic support
- P11. Needs and experiences of people with dementia and their carers II
- P12. INTERDEM – Care and services
- P13. Neuronet: From risk, to dementia – Understanding disease progression and its causes
- P14. (Inter)National dementia strategies
- P15. Risk factors and dementia
- P16. Psychosocial interventions 1
- P17. Alzheimer Nederland – Technology and ehealth
- P18. Inclusion of people with dementia
- P19. Young onset dementia
- P20. INTERDEM - Needs and experiences of people with dementia and their carers
- P21. Neuronet: Improving data access and the development of predictive models
- P22. Acute and hospital care
- P23. Home and residential care I
- P24. Psychosocial interventions II
- P25. Alzheimer Nederland – Dementia Lab
- P26. Connecting with minority groups
- P27. Meaningful day-time activities and respite
- P28. INTERDEM-Training and education of researchers
- P29. Neuronet: Diagnosis, patient engagement and trials
- P30. Legal and ethical issues
- P31. Home and residential care II
- P32. Training and education of care professionals
- QOP1. Care and services I
- QOP2. Societal perspectives I
- QOP3. Care and services II
- QOP4. Societal perspectives II
- Keynote lectures
- PL1. Diagnosis and post-diagnostic support
- PL2. Technology and e-health
- PL3. Making our societies more dementia-inclusive
- PL4. How can research lead to better prevention?
- Special Symposia
- Keynote speakers
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Acknowledgements
The research leading to these results has received funding from the European Community's Seventh Framework Programme (FP7/2007-2013) for the Innovative Medicine Initiative under Grant Agreement No 115009. -
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