Other rare causes of dementia
Other forms of dementia
- COGNITIVE DYSFUNCTION IN MULTIPLE SCLEROSIS
- NORMAL PRESSURE HYDROCEPHALUS
Last Updated: Thursday 27 August 2015
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- 2013: National policies covering the care and support of people with dementia and their carers
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- 2012: National Dementia Strategies (diagnosis, treatment and research)
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- Acknowledgements
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- 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
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- 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
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- 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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- Research
- Clinical Trials Watch
- Value of Knowing
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- Cost of dementia
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- Health economic aspects of dementia
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- 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
- Understanding dementia research
- Continence care
- Conferences
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Other forms of dementia
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Acknowledgements
This information was gathered in the framework of the European Commission financed project "Rare forms of dementia". Neither the European Commission nor any person acting on its behalf is responsible for any use that might be made of the following information. -
