Julian Hughes
Julian Hughes (United Kingdom): An ethical framework to support people with dementia and their carers
- Alzheimer Europe
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- Who we are
- Finances
- Statutes, rules and regulations
- Our work
- Dementia
- A-Z of dementias
- Alzheimer's disease and Alzheimer's dementia
- 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
- COVID-19
- Information for people living with dementia
- Advice for caregivers and families
- Information for minority ethnic groups
- COVID-19 and intellectual disabilities
- COVID-19 in numbers: epidemiology
- COVID-19 and Ethics
- Global resources
- European Union resources
- National resources
- General and scientific resources
- Mental health resources
- 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)
- COVID-19
- Policy
- 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
- WHO action on dementia
- National Dementia Strategies
- Austria
- Belgium - Flanders
- Belgium - Wallonia
- Bosnia and Herzegovina
- Bulgaria
- Croatia
- Cyprus
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Gibraltar
- Greece
- Hungary
- Iceland
- Ireland
- Israel
- Italy
- Jersey
- Luxembourg
- Malta
- Montenegro
- Netherlands
- Norway
- North Macedonia
- Poland
- Portugal
- Romania
- Slovakia
- Slovenia
- Spain
- Sweden
- Switzerland
- Turkey
- United Kingdom (England)
- United Kingdom (Northern Ireland)
- United Kingdom (Scotland)
- United Kingdom (Wales)
- Country comparisons
- 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
- 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 ...
- Wellbeing of people with dementia during COVID-19 pandemic
- Dementia Research and COVID-19
- Data sharing in dementia research – the EU landscape
- Triage decisions during COVID-19 pandemic
- 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
- 2020: Legal capacity and decision making
- 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
- Summary
- 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
- 2020: Legal capacity and decision making
- Database of initiatives for intercultural care and support
- Afro-Caribbean
- Albanian
- Arabic
- Bengali
- Chinese/Cantonese/Mandarin Chinese
- Croatian
- Danish
- English
- Estonian
- Farsi
- Hindi
- Indonesian
- 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
- Thai
- 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
- News
- Publications
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Facing dementia together: People with dementia and their carers
