- Editorial by the coordinator
- What is ALCOVE?
- Which European institutions are involved in the Joint Action?
- Main questions addressed and anticipated outcome of ALCOVE
The last 50 years in Europe have seen a dramatic increase in healthy life expectancy. However, this period has also seen a corresponding elevation in diseases linked to aging such as dementia. More than 7 million Europeans are directly affected by dementia, the most common form being Alzheimer's disease which is characterised by progressive memory and cognitive troubles as well as the occurrence of disturbing behaviour disorders.
Due to their prevalence, cost and profound impact on society, Alzheimer's disease and other dementia are public health priorities in EU Member States. There is a need to improve knowledge and practice in various fields such as epidemiology, clinical treatment options, and ethics so that European health and social systems are better equipped to deal with these diseases. Innovative health support systems are necessary for the improvement of access to diagnosis, care and treatment, including non pharmacological therapies and support for the daily carers.
Indeed, in the last few years we have seen numerous initiatives to implement new approaches such as integrated care models which combine a medical and social approach as well as efforts to prevent the risks related to medications in this very fragile population. The common goal in these new strategies is to improve quality of live for both the individuals living with dementia and their carers.
Cooperation and benchmarking between European Member States provide the opportunity to better respond, and much more quickly, to this challenge in a strained economic environment. And so, the ALCOVE network's mission is to enlighten European public officials and each Member State while achieving a shared synthesis of updated knowledge, practice and innovative models which have been implemented in Europe.
2011 marked the concerted establishment of an ALCOVE work plan and the collective development of the governance rules and tools necessary for a successful network.
We are now at the midway point of the ALCOVE project, and our website, alcove-project.eu, contains all the useful information on the different ALCOVE work packages as well as our progress in our efforts thus far.
In April 2012 we will be meeting with our 30 Associated and Collaborative Partners in Paris to share our preliminary findings.
I would like to take this opportunity to express my gratitude for all of the work that has been accomplished thus far and for the enthusiasm that has been expressed for ALCOVE, a project that is both complex and ambitious, yet incontestably useful for the European countries and their citizen.
A very good year to all of you,
Armelle Leperre Desplanques
ALCOVE aims to improve knowledge on dementia and its consequences and to promote the exchange of information to preserve health, quality of life, autonomy and dignity of people living with dementia and their carers in EU member states.
By the end of the 24-month project period, ALCOVE will produce a report which can be used to guide public health decisions in EU Member States in order to better coordinate the management of people living with Alzheimer's disease.
A willingness to participate in this voluntary joint action has been shown by 30 partners from 19 countries (Belgium, Cyprus, Czech Republic, Finland, France, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Portugal, Slovakia, Slovakia, Spain, Sweden and the UK), with the Haute Autorité de Santé (HAS) in France acting as coordinator of the action. All these countries have agreed to work in a collaborative way at European level. Seven countries are leaders of seven work packages and the work package leaders will identify key stakeholders, including national Alzheimer associations, to involve in carrying out their work.
Executive board: Dr Armelle Leperre – Desplanques, Dr Nathalie Riolacci – Dhoyen, Christine Barr, Maggie Galbraith, ALCOVE coordination team, Haute Autorité de Santé, France; Tomás López-Peña Ordoñez, Carlos Segovia, Gloria Villar Acevedo, Instituto de Salud Carlos III, Spain; Pr Michal Novak, Pr Rostislav Skabranova, Martina Jerzovicova, Slovenska Akademia Vied – Neuroimmunologicky Ustav, Slovakia; Pr Nicola Vanacore, Pr Francesca Galeotti, Pr Angela Giusti, Pr Fiorentino Capozzoli, Istituto Superiore di Sanita, Italy; Dr Karim Saad, Regional Clinical Lead for Dementia, Coventry UK; Pr Dawn Brooker; Dr Simon Evans, Dr Jerry La Fontaine, University of Worceter, UK; Jerry Bird Department of Health, UK; Dr Helka Hosia-Randel, Pr Matti Mäkelä, Harriet Finne-Soveri, Paivi Topo, Ulla Eloniemi-Sulkava, National Institute of Health and Welfare, Finland; Bénédicte Gombault, Gerrit Raws, Tom Goffin, King Baudoin Fundation, Belgium; Associate partners: Dr Catherine Helmer, INSERM, France; Pr Anders Wimo, Karolinska Institute, Sweden; Areti Efthymiou, Eleni Margioti, Nikolaou Costas, Maria Panagiotou, Paraskevi Sakka, Athens Association of AD and Related Disorders, Greece; Teresa di Fiandra, Giovanni Nicoletti, Fabrizio Oleari, Fiammetta Landoni, Cecilia Prezioso, Ministero della Salute, Italy; Barbara Borroni, Luca Rozzini, Enza Castronovo, Alessandro Padovani, University of Brescia, Neurology Clinic, Italy; Pr Wladimir Kuznecovs, Riga Centre of Psychiatry and Addiction Disorders, Latvia; Pr Daiva Rastenyte, Kaunas University of Medicine, Lithuania; Pr Gemma Villanueva, Pr Gemma Lopez Argumendo, Fundacion Vasca de innovation e investigation Sanitarias, Spain; Dr Gregory Emery, Virginie Ponelle, Pr Emmanuel Hirsh, Espace Ethique de Assistance Publique des Hôpitaux de Paris, France; Collaborative partners: Irene K-Georghiou, Health Services, Ministry of Health, Cyprus; Martina Mátlová, Ceska alzheimerovska spolecnost, Czech Republic; Janos Kalman, University of Szeged - Szegedi Tudományegyetem, Hungary, Genovaite Paulauskiene, Ministry of Health, Lithuania; Valmantas Budrys, Vilnius University Faculty of Medicine, Lithuania; Dorothee Knauf-Hübel, Ministère de la Santé, Luxembourg; Malou Kapgen, Ministère de la Famille et de l'Intégration, Luxembourg; Isabelle Avallone, Ministeru tas-Saħħa, l-Anzjani u l-Kura fil-Kommunita, Malta; Jacqueline Hoogendam, Ministry of Health, Welfare and Sports, Netherlands; Kristin Løkke, Ministry of Health and Care services, Norway; Miguel Xavier, National Coordinating Body for Mental Health, Portugal; Lubica Pitlova, Ministerstvo školstva Slovenskej Republiky, Bratislava, Slovakia; Isabel Saiz, Spanish Ministry of Health, Spain; Louise McCabe, Dementia Services Development Centre, University of Sterling, UK.
1. How to improve data for better knowledge about dementia prevalence?
2. How to improve access to dementia diagnosis as early as possible?
3. How to improve care for people living with dementia and particularly those with behavioural disorders?
4. How to improve the rights of people with dementia, particularly with respect to advance declarations of will?
In order to answer these questions, the work of the project is divided into 7 Work Packages. The desired anticipated main outcomes are:
1. The establishment of sustainable European network for the exchange of experiences and knowledge at the level of health care institutions in order to improve quality of care and services.
2. To inform and advise decision-makers, health care professionals, care givers and citizens in general through convergent recommendations in terms of health policy, and
3. A reduction in the risks associated with psychotropic drugs, with a common focus on the use of psychotropic drugs, in particular antipsychotics.
Preliminary ResultThis is an ongoing project which will not publish its findings until 2013. ALCOVE is not generating original research, but rather is analyzing recent scientific findings and current treatment and care realities in Europe so that recommendations can be generated for good practices in diagnosing and treating individuals living with dementia, both at a theoretical and scientific level.
ALCOVE's Work Package Leaders have decided that a special focus will be made on the over diagnosis and use of antipsychotics to treat the BPSD related to Alzheimer's disease as this is an urgent issue affecting patient safety and the quality of life of individuals living with dementia and their caregivers.
Future steps include defining best practices for the collection of epidemiological date in dementia, evaluating European dementia patients' exposure to antipsychotics, evaluating the health and social care services dedicated to dementia in Europe, generating a synthesis on the risk exposure and risk reduction related to the use of antipsychotics in people living with dementia, assessing national recommendations in European Member States for the diagnosis of health-care systems for dementia early diagnosis and evaluation of their implementation, analysis of the support systems in place for patients experiencing the BPSD related to Alzheimer's disease and their families in both home and residential care settings, analysis of the education health care personnel receive on the prevention and management of the BPSD among patients with mild-to-severe Alzheimer's disease, generating a summary of the good practices in the management of BPSD and the promotion of quality of life in people living with AD and BPSD in their families, mapping the existing models of advance declarations of will and the development of a standard framework, conducting a multidisciplinary analysis and identification of good practices in competency assessment, including the use of psychotic drugs, and coordinating the ALCOVE Final Event in April 2013 to disseminate ALCOVE's findings and recommendations.
About this NewsletterALCOVE Newsletter is an electronic bulletin edited by the Health Institute Carlos III of Spain.