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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- General acknowledgements
- Appendix
- 2012: National Dementia Strategies (diagnosis, treatment and research)
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- Acknowledgements
- 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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- Ireland
- Italy
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- Sweden
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- United Kingdom - England
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- Acknowledgements
- 2007: Social support systems
- Austria
- Belgium
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- Slovenia
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- United Kingdom - England
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- 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
- Glasgow Declaration 2014
- Paris Declaration - 2006
- European Alzheimer's Alliance
- Ethics
- European Dementia Ethics Network
- Definitions and approaches
- Ethical issues in practice
- 2018: Intercultural care and support
- 2018: Database on 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
- Research
- Clinical Trials Watch
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- GENERATION S1 study
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- HARMONY study
- LUCIDITY study
- MissionAD1 & MissionAD2 studies
- 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
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- Psychosocial interventions
- Social Support Systems
- Cost of dementia
- PharmaCog
- Comparative studies
- Understanding dementia research
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- P1. Alzheimer Nederland – Young onset dementia
- P2. Memory clinics and centres
- P3. Needs and experiences of people with dementia and their carers I
- P4. INTERDEM-Training and education of care professionals
- P5. Neuronet
- P6. Awareness and policy campaigns
- P7. Technology
- P8. Socio.economic aspects of dementia
- P9. Alzheimer Nederland – Social innovation
- P10. Post-diagnostic support
- P11. Needs and experiences of people with dementia and their carers II
- P12. INTERDEM – Care and services
- P13. Neuronet
- P14. (Inter)National dementia strategies
- P15. Risk factors and dementia
- P16. Psychosocial interventions 1
- P17. Alzheimer Nederland – Technology and ehealth
- P18. Inclusion of people with dementia
- P19. Young onset dementia
- P20. INTERDEM - Needs and experiences of people with dementia and their carers
- P21. Neuronet
- P22. Acute and hospital care
- P23. Home and residential care I
- P24. Psychosocial interventions II
- P25. Alzheimer Nederland – Patient involvement in research and policy
- P26. Connecting with minority groups
- P27. Meaningful day-time activities and respite
- P28. INTERDEM – Technology
- P29. Neuronet
- P30. Legal and ethical issues
- P31. Home and residential care II
- P32. Training and education of care professionals
- QOP1. Care and services I
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- QOP3. Care and services II
- QOP4. Societal perspectives II
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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. -
