Other ethical principles
Definitions and approaches
This section examines a few other ethical principles which are equally important when considering the care of people with dementia.
Last Updated: Monday 29 March 2010
- Alzheimer Europe
- Our work
- Strategic Plan (2016-2020)
- 2018 Work Plan
- 2019 Work Plan
- Current projects
- Annual Reports
- Annual Report 2017
- Annual Report 2016
- Annual Report 2015
- Annual Report 2014
- Annual Report 2013
- Annual Report 2012
- Annual Report 2011
- Annual Report 2010
- Annual Report 2009
- Annual Report 2008
- Annual Report 2007
- Annual Report 2006
- Annual Report 2005
- Annual Report 2004
- Annual Report 2003
- Annual Report 2002
- Annual Report 2001
- Annual Report 2000
- Annual Report 1999
- Who we are
- Finances
- Statutes, rules and regulations
- Our work
- Dementia
- A-Z of dementias
- Alzheimer's disease
- Other forms of dementia
- Neurodegenerative diseases
- Familial Alzheimer's disease
- Dementia with Lewy Bodies (DLB)
- Dementia in Parkinson's disease (PDD)
- Fronto-Temporal Degeneration
- Progressive Supranuclear Palsy (PSP)
- Corticobasal degeneration (CBD)
- Argyrophilic Grain Disease (AGD)
- Multiple System Atrophy (MSA)
- Amyotrophic Lateral Sclerosis (ALS)
- Ataxias
- Huntington's Disease (HD)
- Down syndrome
- Familial British dementia
- Infectious diseases
- Metabolic diseases
- Traumatic diseases
- Toxic diseases
- Cerebrovascular diseases
- Other rare causes of dementia
- Neurodegenerative diseases
- Living with dementia
- After diagnosis - What next?
- Caring for someone with dementia
- Guidelines on continence care for people with dementia living at home
- 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)
- Jean-Pierre Frognet (Belgium)
- Philip C. (Romania & USA)
- Ramona Amariei (Romania)
- Paola (Italy)
- Helga Rohra (Germany)
- James McKillop (Scotland)
- A carer from Spain
- Hasse and Birgitta Hansson (Sweden)
- 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
- 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
- WHO action on dementia
- National Dementia Strategies
- Austria
- Belgium
- Bosnia and Herzegovina
- Bulgaria
- Cyprus
- Czech Republic
- Denmark
- Finland
- France
- Germany
- Gibraltar
- Greece
- Ireland
- Israel
- Italy
- Luxembourg
- Malta
- Netherlands
- Norway
- Poland
- Portugal
- Romania
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom (England)
- United Kingdom (Northern Ireland)
- United Kingdom (Scotland)
- United Kingdom (Wales)
- Country comparisons
- 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
- Latvia
- 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
- European Parliament Elections 2014
- Glasgow Declaration 2014
- Paris Declaration - 2006
- European Alzheimer's Alliance
- Ethics
- European Dementia Ethics Network
- Definitions and approaches
- Ethical issues in practice
- 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
- 2017: Dementia as a disability? Implications for ethics, policy and practice
- Research
- Clinical Trials Watch
- Learn more about clinical trials
- Clinical trials by country
- Clinical trials by condition
- COGNITE study
- GENERATION S1 study
- GENERATION S2 study
- GRADUATE 1 & GRADUATE 2 studies
- HARMONY study
- LUCIDITY study
- MissionAD1 & MissionAD2 studies
- MK-4305-061 study (coming soon)
- NorAD trial (coming soon)
- SYMBAD study
- 17-AVP-786-305 study
- Ongoing studies but not recruiting participants
- 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
- Clinical Trials Watch
- Conferences
- Barcelona 2018
- Videos
- Patronage
- Detailed programme, abstracts and presentations
- K1. Will we be able to prevent Alzheimer’s disease?
- PL1. Dementia as a policy priority
- PL2. Dementia as a human rights priority
- PL3. Dementia as a care priority
- PL4 Dementia as a research priority
- P1. Policies and strategies: Dementia strategies
- P2. Genetics, prevention and treatment: Genetics, modifiable risk factors and prevention
- P3. INTERDEM Academy: The road to success for high impact writing in psychosocial research – tips and tricks
- P4. ROADMAP: Disease outcomes
- P5. Care approaches: Art and dementia
- P6. Care services: Home care
- P7. Rights and dementia-friendly society: Involving people with dementia
- P8. CEAFA/FAE: La persona cuidadora
- P9. Policies and strategies: Awareness campaigns
- P10. Genetics, prevention and treatment: Managing behavioural and psychological symptoms of dementia
- P11. INTERDEM: Interdisciplinary research in dementia: interaction between biological and psychosocial factors in the onset and the course of dementia
- P12. ROADMAP: Ethics challenges for AD research and practice using real-world data
- P13. Care approaches: Dementia-friendly initiatives
- P14. Care services: Acute and hospital care
- P15. Rights and dementia-friendly society: Involving people with dementia II
- P16. CEAFA/FAE: Empoderando a las personas con Alzheimer
- P17. Policies and strategies: Cost/funding of dementia research and care
- P18. Genetics, prevention and treatment: Nutrition
- P19. INTERDEM: Symposium on implementations of technologies to support people living with dementia and carers
- P20. ROADMAP: Regulatory and HTA perspectives on real-world data in AD
- P21. Care approaches: Palliative care
- P22. Care services: Day care and respite care
- P23. Rights and dementia-friendly society: Disability and human rights approaches
- P24. CEAFA/FAE: Entorno
- P25. Policies and strategies: Global and European collaborations on dementia
- P26. Genetics, prevention and treatment: Pharmacological treatment
- P27. INTERDEM: Promoting social health in dementia
- P28. ROADMAP: Real-world data availability across Europe: What data are present, missing and heterogeneity of data collected
- P29. Care approaches: Assistive technologies
- P30. Care services: Nursing home care
- P31. Rights and dementia-friendly society: Consent and decision-making
- P32. Spanish Session (CEAFA/FAE): Plan Nacional de Alzheimer
- OP1. Care and treatment
- OP2. Dementia-friendly society and rights
- PO1. Policies and strategies
- PO2. Care approaches
- PO3. Care services
- PO4. Rights and dementia-friendly society
- PO5. Genetics, prevention and treatment
- Special symposia
- Keynote Speakers
- Conference committees
- Organisers
- Sponsors
- The Hague 2019
- Previous conferences
- Other conferences
- Barcelona 2018
- News
- Publications
