- Alzheimer Europe
- Our work
- Alzheimer Europe published papers
- Strategic Plan (2016-2020)
- 2021 Work Plan
- Current projects
- Annual Reports
- Annual Report 2019
- Annual Report 2018
- 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 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
- 2020: European Dementia Monitor, Comparing and benchmarking national dementia strategies and policies
- 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 ...
- 2021: COVID-19 Vaccinations and People with Dementia
- 2021: EU Green Paper on Ageing
- 2021: WHO discussion paper on global action plan on epilepsy and neurological disorders
- 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
- 2020: Triage decisions during COVID-19 pandemic
- 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
- 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
- Understanding dementia research
- Continence care
- Conferences
- News
- Publications
- Living with dementia
Living with dementia
Having dementia or caring for someone who has dementia will present new and often challenging issues to cope with. From the point of being diagnosed with dementia, both the person with dementia and their carer has to find ways of dealing with the very practical issues which arise, such as changing behaviour, memory loss and finding out not only what type care may be required but how to find it. This section offers tips for people with dementia and their carers on the different aspects which arise.
Click here to contact your national Alzheimer/dementia association.
Last Updated: Thursday 29 January 2015
