Sharing knowledge to advance healthcare policies in Europe for people living with dementia and their carers
A report published by Alzheimer’s Disease International in 2011 suggested that up to 28 million of the 36 million people living with dementia across the world have yet to receive a diagnosis, limiting their access to treatment, information and care. The report also stated that lack of detection is a significant barrier to improving the lives of people with dementia as well as their families and their carers, and that the costs of early detection can be offset by projected future savings. The report recommended that every country should have a national dementia strategy that promotes early diagnosis and intervention.
The European Union has been quick to respond to this increasingly urgent agenda and to recognise the need to address the health, social and economic issues that dementia poses for society. In 2007 the European Commission (the EU’s executive body) funded the project “European Collaboration on Dementia – EuroCoDe”. This project, led by Alzheimer’s Europe, included work to provide an overview of national, international and European guidelines on the diagnosis and treatment of dementia.
In 2009, the European Parliament adopted a written declaration on the priorities in the fight against Alzheimer’s disease. This declaration called on the European Commission and the member states to develop a European Action Plan and to collaborate in order to improve early diagnosis and the quality of life of people with dementia and their carers. In July 2009 the European Commission issued a commitment to support member states in addressing the issue of dementia.
The EU Joint Action on Alzheimer’s initiative (ALCOVE) was launched in 2011 in an effort to step up cooperation and support to improve prevention, diagnosis, treatment and care across European Member States. ALCOVE was a two-year project addressing four core areas:
- How to improve data for better knowledge about dementia prevalence;
- How to improve access to dementia diagnosis as early as possible;
- How to improve care for people living with dementia and particularly those with behavioural disorders;
- How to improve the rights of people with dementia, particularly with respect to advance declarations of will.
The project was split into seven Work Packages with each being lead by a different EU country:
- Work Package 1 – France
- Work Package 2 – Spain
- Work Package 3 – Slovakia
- Work Package 4 – Italy
- Work Package 5 – UK
- Work Package 6 – Finland
- Work Package 7 – Belgium
In December 2011 ADS was invited to tender by the Department of Health to lead Work Package 5 to address the issue of Early Diagnosis and Interventions with the following objectives:
- To compare national recommendations for the diagnosis of dementia, in order to access a common definition;
- To assess different approaches of healthcare systems to develop recommendations to improve early diagnosis.
Since then we have worked alongside colleagues from countries all over Europe to produce a set of evidence-based recommendations for policy makers across the EU on dementia, specifically addressing:
- Prevalence and Epidemiological Data
- Quality and Timeliness of Diagnosis
- Strategies for Behavioural and Psychological Symptoms
- Ethical and Legal Issues for Advanced Directives and Competency Assessment
- Antipsychotic Limitation in Dementia
The ADS team consisted of:
- Professor Dawn Brooker Work Package 5 Lead for the UK
- Dr Simon Evans Senior Research Fellow
- Jenny La Fontaine Senior Lecturer
- Jennifer Bray Research Assistant
The Work Package 5 project team also included a number of key stakeholders from the UK:
- Professor Alistair Burns – National Clinical Adviser for Dementia
- Jerry Bird – Department of Health Project Manager on the Dementia Strategy
- Dr Karim Saad – Department of Health Clinical Adviser on the ALCOVE project
- Peter Ashley – Honorary Masters Degree from University of Worcester
- Dr Bernie Coope – Lead Consultant for Older Adult Services with Worcestershire Mental Health Trust
The team worked with the following representatives and associate partners to coordinate the collection of information from each of the 27 EU Member States:
- Anders Wimo – Sweden
- Vladimirs Kuznecovs – Latvia
- Petr Novak – Slovakia
- Gemma Villanueva – Spain
- Eleni Margioti – Greece
- Armelle Desplanques – France
- Daiva Rastenyte – Lithuania
The focus of the work was on:
- Comparing mechanisms to provide for the early diagnosis of dementias e.g. Memory Clinics;
- Exploring the role of general practitioners in ensuring early diagnosis;
- Conducting an assessment of recommendations and strategies for systematic screening.
This programme is now complete and we presented our findings at a ministerial level event to launch the main outputs in Paris on 28th March 2013. Professor Dawn Brooker and Dr Karim Saad presented the work from the UK alongside Professor Anders Wimo. Also in our delegation were Jenny La Fontaine, Jennifer Bray, Jerry Bird and Peter Ashley.
The audience included delegates from 24 countries and speakers included:
- Jean-Paul DELEVOYE, President of the French Economical, Social and Environmental Council
- Jean-Luc HAROUSSEAU, President of the French National Authority for Health
- Michael HÜBEL, Head of Programmes & Knowledge management, Health & Consumers DG, European Commission
- Alistair BURNS, National Clinical Director for Dementia, United Kingdom
- Michèle DELAUNAY, French Minister of the Elderly and the Autonomy
The recommendations and associated reports will be of interest to all those working in the field as they tackle some of the most challenging issues facing health and social care.
For the most up to date information you are directed to:
- A short video from each work package lead
- The final synthesis report (108 pages)
- The full list of recommendations (10 pages)