Joint Action on Dementia 2015-2018The Joint Action will focus on two phases on work: approximately 12 months on developing a consensus on the best evidence of effective action in 4 key areas (diagnosis and post-diagnostic support; crisis and care coordination; quality of care in residential care settings; and dementia-friendly communities); and approximately 24 months on testing the best evidence of effective action in localities to develop a greater understanding of how change can be taken forward in practice.In addition, there will be 3 additional components: evaluation of the joint action (outputs and quality: dissemination; and overall coordination of this project.The project will be achieved through collaborative effort, with the 4 main work plans having identified leads or co-leads and other countries contributing time to the work.
The World Health Organisation (WHO) recognises dementia as a public health priority. In May 2017, the World Health Assembly endorsed the Global action plan on the public health response to dementia 2017-2025. The Plan provides a comprehensive blueprint for action – for policy-makers, international, regional and national partners, and WHO – in areas such as: increasing awareness of dementia and establishing dementia-friendly initiatives; reducing the risk of dementia; diagnosis, treatment and care; research and innovation; and support for dementia carers.
Dementia is a devastating condition for the people affected, their family and friends, and for health systems. The OECD (Organisation for Economic Co-operation and Development) has been working on how health systems need to be adapted to rise to the challenge; looking at ways to harness information technologies and big data to improve the prevention and treatment of the disease; and examining the innovation model to mobilise the research and tools needed to address dementia.
The EU Council of Ministers adopted Council Conclusions on “Supporting people living with dementia: improving care policies and practices” on the 7 December 2015 which, inter alia, welcomed the second Joint Action (JA) on Dementia “Act on Dementia”, to be launched in 2016, and invited Member States to: address dementia as a priority through cross-sectoral national strategies, action plans or programmes on dementia to provide appropriate treatment and assistance to people living with dementia, their families and caregivers, while ensuring the sustainability of health and social security systems, and to continue to devote special attention to strengthening the coordination within Member States of relevant policies in the field of dementia, including reinforcing the role of primary care. EU Joint Actions are designed to encourage governments, academics and other non-profit organisations to join forces across Europe to tackle problems shared by many EU Member States and are co-financed with Member State authorities under the Health Programme. This Joint Action’s outputs are intended to provide practical guidance for policymakers developing and implementing their national dementia plans, policies and strategies. It aims to provide cost-effective and practical examples of the core components of good dementia diagnosis, care and support, with the ultimate objective of improving the quality of life for those living with dementia and their carers.
Improving diagnosis, services and community support for people with dementia will help to ensure that a greater proportion of people with the disease will be enabled to live a good quality of life in their own home and in their community for longer. This in turn will contribute to avoiding the financial burden of health and social care expenditure on unnecessary hospital and residential care admissions. When people do require institutional care, it is important that they receive safe, effective and high quality care, which protects and promotes their dignity and respect and maintains their quality of life. This work will build on the previous JA (ALCOVE) and contributes to the overarching objective of the EU Health Programme 2014-2020 to: Promote health, prevent diseases and foster supportive environments for healthy lifestyles taking into account the ”health in all policies' principle”, Contribute to innovative, efficient and sustainable health systems and Facilitate access to better and safer healthcare for Union citizens.
JA-DEM2 is divided in three horizontal WPs (WPs 1 to 3) and 4 core WPs (WPs 4 to 7). Three of the core WPs are based traditionally in the sphere of health and social care delivery (Diagnosis and post diagnostic support, Crisis and Care Coordination, and Residential Care respectively) while the fourth cuts across several areas of policy (Dementia Friendly Communities).
JA DEM2 is broken down into three phases of work. The first phase was focussed on surveying the available evidence, reaching consensus on best practice models for change to be tested in localities. In the second phase, each core WP will agree test sites and which best practice models are to be tested. The third phase will allow each WP to test the best practice models of change. During this reporting period, phase one has been completed for all core WPs, and phase two is well underway for all WPs.
During phase one, primary research activities have taken the form of online surveys, consultative meetings and interviews. Secondary research activities have been extensively used in this first phase of the JA The methodology employed within each WP has been peer reviewed and evaluated by WP3 (AQUAS), and recommendations to improve the robustness of the final products from the first phase of this project (evidence reports) have been accepted by each of the core WP areas.
During the evidence-gathering phase efforts have been made to include the target group – people living with dementia or those with the Behavioural and Psychological Symptoms of Dementia (BPSD) and their carers. The target group has been reached with the help of the Alzheimer Europe Working Group from People with Dementia. Alzheimer Europe is also represented on the advisory and steering groups of the project.
Care has also been taken to ensure that a similar methodology to obtain models of best practice in the 4 core areas of Act on Dementia Joint Action
During the first eighteen months, the partners in each of the WPs have worked hard to achieve deliverable outputs through several meetings and teleconferences. However there have been delays. These have been due partly to the complexity of work plans to achieve the best primary and secondary evidence, an partly as a result of organisational restructuring, illness of key personnel and delays in recruitment of research staff. However, despite these delays significant progress has been made across all areas of work.
Work Package 4
- Deliverable 1 (WP4.D1) - Report on the benefits and risks of NCD/dementia diagnosis:
• Literature research, analysis and synthesis (France);
• Elaboration of the first version of the report (France, with support of WP4 partners);
• Discussion of the associated content in WP4 meetings (physical meeting, conference calls) (All WP4 partners) & amendment of the document (France);
• Presentation of the main associated conclusions at the Alzheimer Europe meeting (Brussels, 28th of June 2017) (France).
- Survey on the current practices about diagnosis & post-diagnosis supports in Europe (in link with WP4.D2 & WP4.D3) :
• Elaboration of the different parts of the survey: Governments, Health Professionals, Patient/Family Associations (France, in collaboration with other WP4 partners);
• Conception & implementation of the online surveys (France);
• Identification of the respondents (All WP4 partners);
• Sending of the links related to the online surveys in April 2017 to the respondents (France, with support of other WP4 partners);
• Collect of the answers - work in progress (France);
• Presentation of the preliminary results at the Alzheimer Europe meeting (Brussels, 28th of June 2017) (France).
- Deliverable 2 (WP4.D2) - Report on testing evidence-based examples of best practices in diagnosis of dementia :
• Finalization of the shared scheme on dementia diagnosis graduated strategy (France, in collaboration with other WP4 partners);
• Redaction of the associate scientific publication (France);
• Submission of 2 abstracts for presentation in congresses to come (2017 Alzheimer Europe Conference and to 2017 European Union Geriatric Medicine Society Conference) (France);
• Choice of the implementation projects to be further tested: (1) Destigmatisation program towards the GPs; (2) (Nurse/GP cooperation, and (3) Telemedicine to improve dementia detection in nursing homes (All WP4 partners).
Work package 5
WP5 has worked to complete the deliverable 3.1 - Review and survey on relevant research and practices of dementia care coordination and crisis response services for people with dementia. in particular, WP5 tried to improve the synthesis of evidence either building tables with different types of studies than reporting specific evidence of the RCTs already previously collected in accordance to the PICO process; reviewed the evidence on “Management of crises and access to emergency care or acute care” including other 11 articles
-WP5 has worked to complete the qualitative and quantitative self-administered questionnaire/survey which was sent to all EU Member States, not only those participating in the Joint Action, and WP5 has obtained a response rate = 20/29(69%) This includes working with Alzheimer Europe to extend scope to survey to countries that did not participate in the survey conducted in December. (Austria, Belgium, Croatia, Denmark, Finland, Poland, Romania, Sweden)
WP5 began discussions on Deliverable 5.2 - -Identification of the best practice in care co-ordination and crisis response services for people with dementia.
WP5 Italian team contributed to WP 4 deliverable 1, and to call conference to
WP4 on survey items/questions and procedures.
WP5 co-leader, Nicola Vanacore, went to Modena (Emilia Romagna Region) to meet managers of Health Local (AUSL Modena), to set out the objectives of our JA and to discuss the possibility that Modena could participate in testing the best practice models identified in the JA. AUSL Modena has developed a network of assistance and care of services dedicated to dementia formed by:
Centres for Cognitive disorders and dementia; temporary residential care for dementia; day care dementias; residential and semi-residential facilities (where the percentage of people with dementia is high);nuclei in primary care with project dedicated to cognitive disorders; five voluntary associations of family members of people with dementia. In this AUSL hav
Work packages 4-7 have each undertaken evidence reviews, which are near final and shortly to be submitted on the EU Portal. Each work package has identified best practice (s) during phase 1 work, which will be tested during phase 3 of the JA in some pilot sites.
WP 4 - DEMENTIA/NEUROCOGNITIVE DISORDERS (NCD) DIAGNOSIS AND POST DIAGNOSTIC SUPPORT
The aim of this work package is to provide to the EU Members States clear arguments, as well as evidence-based/proven information when applicable, regarding both the advantages and the disadvantages associated with the diagnosis at each step of the disease, both for people living with dementia/NCD, but also for their family and caregivers, for the healthcare providers, and for the health and social care economy, through a specific analysis of the existing literature on the topic.
An evidence review, which was the first deliverable of this WP has summarised the evidence of the benefits/profits and the risks/challenges/disclosures associated with the dementia/NCD diagnosis and WP4 has set out a new diagnosis strategy for dementia/NCD which has been validated both by the European Commission and the French medical institutions. The evidence review is being peer reviewed by the evaluation team (WP3) and will be placed on the JA website once it has been signed off by the Programme Board.
WP4 has undertaken associated literature searches and analysis on the best tools for detection/diagnosis of NCD/dementia, and started the construction of the pilot projects on three main topics following the recent observations/analyses and the preliminary results of their online surveys, which are the following:
(1) A destigmatisation programme aimed at General Practitioners (GPs) regarding NCD/dementia;
(2) A nurse/GP cooperation programme to improve NCD/dementia detection; and
(3) A telemedicine programme to improve NCD/dementia detection in nursing homes.
These 3 pilot projects will start to define their implementation plans in November 2017 and will start executing their plans in January 2018. The feasibility report and the associated results of testing each of these areas, which aim to improve both detection and diagnosis for people with NCD/dementia, will be included within the second deliverable. The third deliverable will provide and evidence report on the post-diagnosis supports for people living with NCD/dementia.
WP4 has built and reached agreement for a hierarchized diagnosis strategy tailored to the patient to better determine and explain the complex diagnosis routes as regard to best evidence and international practices. This consensual strategy will help to better involve primary care in European countries, especially GP’s, in neurocognitive detection, and adapt the diagnosis processes to the patient/caregiver wills and needs.
WP5 – Crisis and Care Co-ordination
The aim of this work package is to provide to the EU Members States clear, evidence-based and tested information and recommendations on how to effect change and improvement in care co-ordination and crisis response services for people with dementia.
To achieve this, WP5 have written a report identifying evidence-based best examples of best practice in care co-ordination and crisis response services for people with dementia. This involved mapping of relevant research on and practices of dementia care co-ordination in participating countries, including defining dementia crisis and care co-ordination. This was done by defining research questions, including the definition of crisis and care co-ordination in dementia, and scoping a definition of what will be considered as crisis and care coordination, and to whom and in which setting this definitions will be applied.
A systematic review of published literature and a review of available public documents such as guidance, policies and legislations, was carried out using a set of defined keywords which included care pathways for patients with dementia, information on
During the reporting period, each core WP had produced a near final evidence report and all were awaiting sign off by the Programme Board at the time of writing. However, at this stage the JA was not expecting to have delivered evidence to demonstrate significant progress towards each of the four expected Outcomes from Act on Dementia. Below is a brief review of achievements against each outcome:
(1) Evidence of benefit in test sites of applying best practice – Test sites are not yet activated.
(2) Evidence of adoption of evidence in Member States not participating in the Joint Action (assessed using measures and methodology agreed in the Evaluation Plan). – Evidence will not be available till nearer the end of the JA.
(3) Evidence of stronger collaboration between Member States in respect of dementia. The JA partners have already demonstrated stronger collaboration by looking at ways to combine pilot testing between each of the core WPs. There is also evidence of stronger international collaboration as the WHO dementia Friendly toolkit is closely aligned to the work of this JA WP7.
(4) Evidence for continued EU prioritisation of dementia. The continued work programme of the EU Expert Group on Dementia, and the renewal of, or launches of Dementia Policy and Strategy documents by Member States is evidence of the continuing prioritisation of dementia.
Dissemination WP2
The aims of this WP are:
• to ensure that people and organisations providing institutional or statutory care for people with dementia and officials and politicians within Member States who have the responsibility for health and social care services know about the (JA); and
• to ensure that learning from the JA is shared widely so that people living with dementia and the people who care for them benefit from improved services.
The activities carried out during the first 18 months related to these objectives. Key actions included:
• Establishment of a Dissemination Advisory Group (DAG) and arranging meetings of the group; (the DAG includes a representative of each WP and Alzheimer Europe)
• Development and provision of the visual identity of the JA – logo and branding
• Preparation of the EU JA -Act on Dementia leaflet, display banner and business card
• Conducting of a procurement exercise to secure expert advice on website development and working closely with that agency on website development
• Launch of temporary website (October 2016)and establishment of static website and ongoing work to finalise the full website
• Preparation of the “Communication Digital Strategy”, and dissemination work plan and circulation to DAG and Programme Board (PB) members;
• Initial stakeholder mapping exercise;
• Provision of templates for Power Point presentations and update documents;
• Participation in dissemination activities (conferences, meetings etc).
• Development of a calendar of events
• Attendance at Alzheimer Europe Conference in Copenhagen in 2016 and Berlin 2017
• Attendance at the EU Expert Group on Dementia, which was held during the Council of Europe Presidency Event in Bratislava 2016 and Malta in 2017
• Input to The World Health Organisation (WHO) consultation on its Draft WHO global action plan on the public health response to dementia 2017-2025. The plan was adopted by WHO Member States at the 70th World Health Assembly in May 2017.
• In June 2017, the JA was invited to present to the AE Public Affairs Committee.
WP3 Evaluation
The specific aims of this WP are:
• To evaluate the impact of the JA using appropriate qualitative and quantitative measures.
• To support the production of interim and final reports on the JA Act on Dementia.
• To ensure that individual WP deliverables meet an acceptable quality threshold.
Activities carried out during the first 18 months of the JA have included:
• The development of the JA Evaluation Plan, first deliverable of WP3, agreed by Joint Action Programme Board; this is a ‘live’ document subject to ongoing minor modification as the JA proceeds; also, producing a meeting schedule.
The Evaluation plan includes two sections: part I and part II.
Part I includes the following tasks:
• Evaluation of accomplishment of milestones and deliverables and their deadlines (task 1),
• Evaluation of accomplishment of all meetings and the quality of Programme Board (PB) and final meetings (task 2).
• Peer reviewing activities to promote methodological quality of key documents and materials (task 3).
• Evaluation of methodological quality threshold of key deliverables (task 4).
Part II includes the task 5, related to the impact assessment of JA Act on Dementia. Measuring impact assessment within the JA Act on Dementia implies the degree in which main goals of the project are achieved & benefits are evidenced at short, medium and long term related to these aims. The tasks 5 are divided in different subtasks detailed in the Evaluation plan.
• Establishment of an Evaluation Advisory Group (EAG); the EAG includes a representative of each WP and Alzheimer Europe.
• WP3 has worked also in its second deliverable, the implementation of the Evaluation plan. WP3 arranged some meetings with each WP to discuss and close methodological quality assessment and peer-review of all work plans and technical reports