2019 Ethics report
2019 Alzheimer Europe Report: Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research.
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- June 2017 MEP Sirpa Pietikäinen hosts roundtable in European Parliament on Alzheimer’s disease
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- 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”
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- February 2014: "The Innovative Medicines Initiative: improving drug discovery for Alzheimer’s disease"
- December 2013: "Comparing and benchmarking national dementia policies"
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- 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"
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- September 2008: "Current and future treatments for AD"
- MEPs speak out on dementia
- Heinz K. Becker MEP (Austria)
- Nessa Childers (Ireland)
- Jan Andersson (Sweden)
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- Alojz Peterle (Slovenia)
- Igor Šoltes (Slovenia)
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- Ivo Vajgl ( Slovenia)
- Dr. Milan Zver (Slovenia)
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- Dr Miroslav Mikolášik (Slovakia)
- Elena Oana Antonescu (Romania)
- Maria Badia i Cutchet (Spain)
- Heinz Becker (Austria)
- John Bowis (United Kingdom)
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- Frieda Brepoels (Belgium)
- Milan Cabrnoch (Czech Republic)
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- Ole Christensen (Denmark)
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- Frédérique Ries (Belgium)
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- Patrizia Toia (Italy)
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- 2020: European Dementia Monitor, Comparing and benchmarking national dementia strategies and policies
- 2018: Comparsion 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
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- 2013: National policies covering the care and support of people with dementia and their carers
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- 2011: Restrictions of freedom
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- 2010: Legal capacity and proxy decision making
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- Acknowledgements
- 2009: Healthcare and decision-making in dementia
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- Acknowledgements
- 2007: Social support systems
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- 2006: Reimbursement of anti-dementia drugs
- 2005: Home care
- Our opinion on ...
- 2021: EU4Health Annual Work Programme 2022
- 2021: WHO draft Intersectoral global action plan on epilepsy and other neurological disorders
- 2021: COVID-19 Vaccinations and People with Dementia
- 2021: EU Green Paper on Ageing
- 2021: WHO discussion paper on global action plan on epilepsy and neurological disorders
- 2021: Data sharing in dementia research – the EU landscape
- 2020: Dementia Research and COVID-19
- 2020: Wellbeing of people with dementia during COVID-19 pandemic
- 2020: Triage decisions during COVID-19 pandemic
- 2017: Involving people with dementia in research through PPI (patient and public involvement)
- 2017: Recommendations on how to improve legal rights and protection of people with incapacity
- 2017: Policy on collaboration with other organisations
- 2007: Anti-dementia drugs
- 2006: Disclosure of the diagnosis to people with dementia and carers
- 2007: The Hague Convention for the International Protection of Adults
- 2007: Stem Cell Research
- 2001: Participation of people with dementia in clinical trials
- 2001: Genetic testing
- 2001: Participation of people with dementia in research
- 2001: Advance directives
- Glasgow Declaration 2014
- Paris Declaration - 2006
- European Alzheimer's Alliance
- Ethics
- European Dementia Ethics Network
- Definitions and approaches
- Ethical issues in practice
- 2020 Ethical issues linked to legal capacity and decision making (summary)
- 2020 Ethical issues linked to legal capacity and decision making (full report)
- Introduction
- Cross-cutting concepts and issues
- About legal capacity and decision-making capacity
- Ethical issues related to the exercise of legal capacity in everyday life
- Conclusion
- Glossary
- References
- Appendix 1 – Details of the members of the expert working group
- Appendix 2 – Personal ombudsperson in Skåne (Sweden)
- Appendix 3 – Criteria and questions to ask when considering the possible use of restraint in the acute hospital care setting
- 2019: Overcoming ethical challenges affecting the involvement of people with dementia in research
- Preface
- Introduction
- Part 1: Ethical Challenges Linked to Public Involvement
- Part 2: Ethical Challenges Linked to Recruitment and to Informed Consent
- Part 3: Ethical Challenges during Participation in Research: promoting wellbeing and avoiding harm
- Part 4: Ethical Challenges Linked to Involvement after the end of research
- References
- Appendix 1 – Co-authors and contributors to this paper
- Appendix 2 – Glossary
- 2020: Policy briefing on intercultural care and support
- 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
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