amyloid
A protein that is found in the brains of people with Alzheimer’s disease. It is deposited throughout the brain in microscopic clumps known as plaques. Its function is unknown and it may be the cause of the deterioration of brain function.
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- 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)
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- Past supporters
- European Parliament Elections 2019
- EU Action on Dementia
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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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- General acknowledgements
- Appendix
- 2012: National Dementia Strategies (diagnosis, treatment and research)
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- Acknowledgements
- 2011: Restrictions of freedom
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- Acknowledgements
- 2010: Legal capacity and proxy decision making
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- Acknowledgements
- 2009: Healthcare and decision-making in dementia
- Austria
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- United Kingdom - England
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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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- Value of Knowing
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- Cost of dementia
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- 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
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- Prevention of dementia
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- Cost of dementia
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- Understanding dementia research
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