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Alzheimer Europe
Our work
Aims
Strategic Plan (2011-2015)
2013 Work Plan
Current projects
Annual Reports
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
Completed AE projects
2011: Legislation relating to restrictions of freedom
2011: The ethics of dementia research
2010: The ethical issues linked to the use of assistive technology in dementia care
2010: Legislation relating to legal capacity and proxy decision making
2009: Legislation relating to healthcare and decision making in dementia
2006-2008: EuroCoDe
2006: Dementia Carers' Survey
2004-2005: Advance directives
2004-2005: Support after diagnosis
2002-2003: Rare forms of dementia
2002-2003: Optimisation of the diagnosis of Alzheimer's disease and related disorders (OPDAL)
2000-2001: Equality in home care provision
1998-2000: Intranet
1997-2000: Lawnet
1997-1999: Children's book
1997: Rural areas
1997: Early onset dementia
1996-1998: Care Manual
1996-1998: ERICA
1995-1997: Telephone Helpline
Who we are
Our members
Our Board
European Working Group of People with Dementia
Members
News & Activities
Our staff
Statutes and Finances
Statutes of Alzheimer Europe
Rules and Regulations
Finances
Financial accounts
AE Sponsors
Sponsorship guidelines
2013 Sponsorship opportunities
Our partners
Alzheimer's Disease International
European Alzheimer's Disease Consortium
European Patients' Forum
INTERDEM
European Association for Palliative Care
Alzheimer Europe publications
Contact us
Dementia
A-Z of dementias
Alzheimer's disease
Who is affected by Alzheimer's disease?
Is Alzheimer's disease hereditary?
Is there a test that can predict Alzheimer's disease?
How is Alzheimer's disease diagnosed?
Is there any treatment for Alzheimer's disease
Main characteristics of Alzheimer's disease
What kind of research has been carried out?
Other forms of dementia
Neuro-Degenerative 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
Human Prion Diseases
Aids Dementia Complex (ADC)
Syphilis
Postencephalitic Parkinsonism (PEP)
Herpes Encephalitis
Metabolic Diseases
Thyroid disorders
Neuro-degeneration with brain iron accumulation type I (NBIA 1)
Cerebral Lipidoses
Dementia in hepatic and renal failure
Dementia due to chronic hypovitaminosis
Metachromatic leukodystrophy (MLD)
Adrenoleukodystrophy (ALD)
Traumatic Diseases
Repeated head trauma
Toxic Diseases
Wernicke-Korsakoff Syndrome (WKS)
Cerebro-Vascular Diseases
CADASIL
Binswanger disease
Cerebral Amyloid Angiopathy (CAA)
Other Rare Causes of Dementia
Cognitive Dysfunction in Multiple Sclerosis
Normal Pressure Hydrocephalus (NPH)
Living with dementia
After diagnosis - What next?
Diagnosis of dementia
Disclosure of the diagnosis
Facing the diagnosis
Taking care of yourself
Developing coping strategies
Maintaining a social network
Attending self-help groups
Accepting help from others
Dealing with feelings and emotions
Changing roles and how you see yourself
On a more positive note
Organising family support
Dealing with practical issues
Financial and administrative matters
Driving
Safety issues
Employment issues
Healthy eating
Contact and communication
Speaking, listening and communication
Signs, symbols and texts
Personal relationships
Talking to children and adolescents
Changing behaviour
Lack of interest in hobbies
Disorientation
Managing everyday tasks
Keeping an active mind
Services
Caring for someone with dementia
The onset of the disease
Diagnosis: should the person with dementia be told?
Dealing with emotions
Arranging who will be responsible for care
Determining to what extent you can provide care
How will Alzheimer's disease affect independent living?
The needs of younger people with dementia
Memory and Communication
Memory loss
Communication problems
Disorientation
Daily life
Personal hygiene
Dressing
Eating and drinking
Personal relationships
Recreation, activities and exercises
Safety
When the person with dementia lives alone
How to help children cope
Changes in mood
Agitation and nervousness
Anger
Apathy
Brusque changes of mood and extreme sadness or happiness
Feeling depressed/having depression
Hallucinations and paranoid delusions (false beliefs)
Over-reaction
Frustration
Anxiety and fear
Changes in behaviour
Aggressive behaviour
Clinging and following
Embarrassing and odd behaviour
Failure to recognise people
Hiding/losing objects and making false accusations
Repetitive questioning
Sexually inappropriate behaviour
Sleeplessness and night-time wandering
Wandering
Medical and physical issues
Constipation
Dental problems
Eyesight
Fits
Hearing
Incontinence (wetting and soiling)
Jerking movements
Lifting and moving the person with dementia
Loss of co-ordination and manual skills
Pressure sores (bedsores)
Coping with caring
Self-help organisations
Looking after yourself
Caring for the person with dementia in the later stages of the disease
Death and bereavement
Brain tissue donations
Personal experiences of living with dementia
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)
Contact your national Alzheimer Association
Policy in Practice
Paris Declaration
Executive Summary
Public health priorities
Research and medical priorities
Care and social support priorities
Legal and ethical priorities
European Alzheimer's Alliance
Members
Alliance activities
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
Jan Andersson (Sweden)
Elena Oana Antonescu (Romania)
Maria Badia i Cutchet (Spain)
John Bowis (United Kingdom)
Frieda Brepoels (Belgium)
Milan Cabrnoch (Czech Republic)
Michael Cashman (United Kingdom)
Nessa Childers (Ireland)
Ole Christensen (Denmark)
Brian Crowley (Ireland)
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)
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 Presidencies
2010 Belgian European Presidency
2010 Spanish European Presidency
2009 Swedish European Presidency
2009 Czech European Presidency
2008 French Presidency Conference
EU Action on Dementia
2009 Joint Programming (ongoing)
2009 European Alzheimer's Initiative (ongoing)
2009 European Parliament Written Declaration
2008 Council conclusions on combatting Alzheimer's disease
National Dementia Plans
Austria
Belgium
Bulgaria
Cyprus
Czech Republic
Denmark
Finland
France
Germany
Greece
Ireland
Luxembourg
Malta
Netherlands
Norway
Poland
Portugal
Romania
Switzerland
Turkey
United Kingdom (England)
United Kingdom (Northern Ireland)
United Kingdom (Scotland)
United Kingdom (Wales)
Country comparisons
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
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
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
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
Home care
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
Reimbursement of anti-dementia drugs
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
Slovak Republic
Slovenia
Spain
Sweden
Switzerland
Turkey
United Kingdom
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
Our opinion on ...
Advance directives
Annex 1 - List of participants
Annex 2 - Acknowledgements
Anti-dementia drugs
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
Ethics
Dementia Ethics Network
Objectives
Structure
Secretariat
Advisory Group
National Correspondents
Working Groups
Dementia Ethics Steering Committee
Honorary Committee
Activities
Dementia Ethics Network Website
Dementia Ethics Network Forums
Dementia Ethics Network Publications
Working groups in the Network
Background Information
Definitions and approaches
What is meant by the term ethics?
Medical ethics and bioethics in Europe
The four common bioethical principles
Respect for autonomy
Beneficence and non-maleficence
Justice
Other ethical principles
Solidarity and interdependence
Personhood
Dignity
Cultural issues linked to bioethical principles
Ethical issues in practice
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
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-fe care
The donation of brain and other tissue
Publication and dissemination of research
Glossary
Annexes
References
The ethical issues linked to the use of assistive technology in dementia care
Background information
AT, ethical issues and legislation
Ethical issues linked to the use of specific forms of AT
Our guidelines and position on the ethical use of AT for/by people with dementia
An ethical framework for making decisions linked to the use of AT
Annexes
Glossary
References
End-of-Life care for people with dementia
Executive summary and recommendations
Our position and guidelines on End-of-life care
Acknowledgement
Bibliography
Advance directives and personhood
Critical interests
Personal identity
Subjective experience
Discontinuity of interests
Psychological continuity
Existence over time
Discussion on ethical principles
Research
Value of Knowing
Public concerns about Alzheimer's disease
Public attitudes towards people with dementia
Public expectations from policy makers
Public experiences of Alzheimer's disease
Public knowledge of Alzheimer's disease
Public beliefs on existing treatments and tests
Public attitudes about diagnosis
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
Assessment
Diagnosis
Psychosocial interventions
Drug treatment for cognitive symptoms
Treatment for behavioural and psychological symptoms of dementia
References
Prevalence of dementia
Prevalence of dementia in Europe
Prevalence of early-onset dementia in Europe
Prevalence of dementia in Eastern Europe
References
Prevention of dementia
Cardiovascular risk factors
Environmental/nutritional risk factors
Biological risk factors
Behavioural risk factors
Recommendations
References
Psychosocial interventions
References and conclusions
Guidelines on psycho-social interventions
Key recommendations
Potential quality indicators
Acknowledgements
Social Support Systems
Executive Summary
General recommendations
Specific services and support for people with dementia and carers
Examples of good practice
Glossary
Acknowledgements
Bibliography
PharmaCog
What is PharmaCog?
Why PharmaCog?
Who are the PharmaCog partners?
Academic Partners
Pharmaceutical companies
SMEs, patient group and regulatory authorities
What do the partners bring to the project?
Coordination
Management approach
Collaboration with other projects
Who financially supports PharmaCog?
How will PharmaCog benefit patients?
PharmaCog's Scientific Approach
Project Structure
Innovation, translation and harmonisation
Work Packages
Events
Publications
News & press
Key contacts
Comparative studies
Understanding dementia research
Participating in research
What is research?
Why do we need research?
Who can take part in research?
Benefits of taking part in research
Risks in taking part in research
Questions to ask about research
Tests used in dementia research
Ethical issues
Types of research
Philosophies guiding research
The four main approaches
Research methods
Clinical trials
What is a clinical trial?
What are the official requirements for carrying out clinical trials in the European Union?
Types of clinical trials
Phases of clinical trials
Types of treatments being researched
Conferences
St. Julian's, Malta, 2013
Important dates
Draft Programme
Invited speakers
Call for abstracts
Social Programme
Registration fees
AE Conference Registration Form
Hotel accommodation
Official Carrier
Practical information
Sponsors
Conference Committees