About us

1.1. SOUNDNESS OF THE CHALLENGE

The increasing population of Europe coupled with the ageing demographics in many European countries means that the overall number of people with dementia is likely to continue to increase significantly. In 2018, 11 million Europeans lived with dementia (1.6% of the European population). In 2050, it is estimated this figure will have almost doubled to 19 million or 3% of the European population1.
There is currently no effective treatment for the neurodegeneration of dementia, i.e. it is not yet possible to halt or reverse the cognitive decline caused by dementia2. Some treatments may temporarily slow down disease progression, but none provide any lasting effect.3 Consequently, care is the most important health intervention for supporting people with dementia and their caregivers and promoting their quality of life.
However, there are profound ethical difficulties involved in caring for people with dementia.4 5 The gradual loss of their cognitive abilities complicates retainment of autonomy and agency, and causes a number of ethical care dilemmas, including: balancing safety with freedom; deciding what is in the best interest of the person with dementia; and recognising that the needs of the person with dementia may sometimes conflict with the needs of others, e.g. those of relatives, other residents at care facilities or the like, who also deserve consideration.
Legal frameworks and professional guidelines are helpful in guiding practice and decision-making, but they call for interpretation and application with regards to specific situations and thus cannot provide precise answers to particular ethical problems.5

1.1.1. DESCRIPTION OF THE STATE OF THE ART

To address ethical challenges in dementia care, a growing body of ethical research has emerged and several initiatives have been implemented. The research on ethics in dementia focuses on what interests people with dementia have,6 research ethics and dementia,7 advance directives, advance careplanning8, and autonomy and personhood,9 assistive technologies10, dignity11 and end- of-life decisions.12
Important policy initiatives have also been implemented to address the ethical challenges in dementia care. In 2008, the need for ethical discussion of dilemmas in dementia care was taken up by the European Commission’s Alzheimer’s initiative. A common reflection on dementia ethics was highlighted as one of the priority areas for European collaboration. It was agreed that greater collaboration on dementia ethics will lead to better ethical practices among people living with dementia and their carers; both formal and informal. In 2009, a network on ethics in dementia was therefore createdthankstoinitialfunding (EUR 60,000) from the German Health Ministry and operation grants of the European Commission. The network, operated by Alzheimer Europe, published ethical reports on various topics, but was discontinued after some years when both the initial funding and the later operation grants expired.13
The British Nuffield Council on Bioethics has also addressed ethical issues in dementia and proposed policy recommendations. More than a decade ago, in 2009, the council published a report on dementia ethics in response to the increasing prevalence of dementia in the UK. The report concluded that both formal and informal caregivers for people with dementia needed more support in tackling the ethical problems they meet on a day-to-day basis than is currently provided. To this end, it presented a new framework aimed at helping people with dementia and their caregivers14. Over the years, organisations, like national Alzheimer and dementia associations, National Health Authorities, and academic institutes, such as the Hastings Center, have published papers, analyses and strategy plans on ethical issues in dementia, such as end-of-life decisions, informed consent, etc.15

In addition, some existing dementia research networks and capacity building organizations occasionally address ethical issues in dementia care, e.g. Interdem, a pan-European network of researchers examining psychosocial interventions in dementia16; and Alzheimer’s Disease International, a capacity building organization helping existing and emerging Alzheimer and dementia associations to develop and strengthen their organisations17. None of them, however, provide systematic development of tools to support ethical decision-making in various European dementia care settings.

In general, there is little homogeneity and uniformity within the European system of care as to how to address ethical problems in dementia care, and much of the existing efforts in terms of implementation of country-specific-strategies are centred in non-Central and Eastern European Countries. At present, countries like Slovakia, Romania, Poland, Lithuania, Latvia, Hungary, Estonia, Croatia and Bulgaria do not have dementia plans available18.
Thus, an unmet need remains for an active network that mobilizes European researchers and stakeholders to research and develop an agile culture and context-sensitive framework to deal with ethical issues in European dementia care. Because of this unmet need, caregivers lack tools and a skill set to make uniform, reflective, ethical care decisions and recommendations across healthcare systems and nations.19-21 To be effective in meeting this need and differ from existing networks and institutions, a network would need to have the following scope and structure:

• An exclusive focus on ethical challenges in dementia
• A broad bottom-up approach to mobilizing a heterogeneous group of stakeholders, including
  formal caregivers, e.g. leaders of homecare services and nursing homes, and informal
  caregivers, people with dementia, NGOs, policy decision-makers, industry and researchers.
• A strong focus on ensuring representation of Central and Eastern European Countries
  (CEECs)
• Application of advancements in dementia research and ethical theory to day-to-day dementia
  care in a broad European healthcare context

This COST Action on Ethics in Dementia (EDEM) will meet such a scope and structure. More broadly, the network will improve the quality and homogeneity of dementia care across Europe, including the quality of care in CEECs, among which only a few countries currently have specific dementia strategies.

1.1.2. DESCRIPTION OF THE CHALLENGE (MAIN AIM)

The main aim of the Ethics in Dementia (EDEM) Action is to promote ethical dementia care beyond the current state of affairs:

EDEM will work (1) to promote dignity, autonomy, and quality of life for people with dementia; (2) to reduce burnout and moral distress among formal and informal caregivers for people with dementia, and (3) to improve the quality and homogeneity of dementia care across Europe, by fostering international collaboration in the field of dementia and ethics, including CEECs. The main COST Action aim is operationalized in objectives centered on:

• Mapping: Exploring ethical problems in dementia care in different European contexts and settings and mapping principles and values relevant to addressing these problems within an ethical framework.
• Development: Providing a proposal for a European framework for ethics in dementia care in the form of a practical catalogue of principles and values.
• Recommendations: Developing policy recommendations on integration of this framework into European healthcare systems and facilities.
• Education: Developing an EDEM educational toolkit that helps caregivers of people with dementia make better ethical decisions. The toolkit will be applicable formal caregivers, and equally useful for informal caregivers either at home or in their contact with nursing homes or other institutional settings.
• European collaboration: Facilitating long-term work-relations and promoting European research in ethics in dementia among Early Career Investigators (ECI), senior researchers and stakeholders more generally. This is a horizontal objective overarching all other objectives.

2.1. ADDED VALUE OF NETWORKING IN S&T EXCELLENCE

2.1.1. ADDED VALUE IN RELATION TO EXISTING EFFORTS AT EUROPEAN AND/OR INTERNATIONAL LEVEL

EDEM differs in scope and organisation from existing networks and institutions like Alzheimer Europe, Alzheimer ́s Disease International, Interdem, The Hastings Center, or The Nuffield Council on Bioethics.
The scope of EDEM is different from initiatives like Interdem, Alzheimer Europe and Alzheimer ́s Disease International, as it focuses exclusively on ethical issues in dementia care and not pharmaceutical, biomedical research and innovation or psychosocial interventions in dementia care22. The practical change-oriented focus of EDEM also sets it apart from both the Hastings Center and the Nuffield Council on Bioethics. EDEM therefore provides a valuable complement to existing efforts in the field.
EDEM also differs in its organisation. The EDEM network will be openly accessible and actively encourage stakeholders to partake in network activities. It will also be a cardinal point of the network for employing interdisciplinary approaches to ethics in dementia care, by establishing close dialogue between various fields of research and dementia care. This Action will thus add value in relation to existing efforts by encouraging stakeholder involvement, providing an educational toolkit for formal and informal caregivers and promoting incorporation of practice experiences in dementia care into research.
In sum, the network both differs from and supplements the work of existing networks and institutions, and will seek to foster collaboration with these networks and institutions to enable knowledge exchange and cross-fertilisation.

2.2. ADDED VALUE OF NETWORKING IN IMPACT

2.2.1. SECURING THE CRITICAL MASS AND EXPERTISE

The COST Action will bring together researchers and key stakeholders from dementia care and ethics from across Europe. It will focus on learning and sharing best practices and experiences across borders, both national and local, and draw on research methods across disciplines.
At the preparation stage of EDEM, an initial critical mass of academic profiles required for reaching RCO1 (Mapping) will be secured, including researchers within dementia ethics, nursing, sociology, cognitive psychology, psychiatry, gerontology and medicine. In addition, the Action has secured broad geographical representation: from Northern, Western, Eastern and Southern European countries; a significant number of early career investigators; and will ensure gender balance. This diverse and inclusive participation will ensure bidirectional transfer of practical interventions, institutional policies and state-of-the-art research methods. This will enable mutual learning across cultures, societies, and healthcare systems.

To unite the critical academic expertise with that of European practice, and in order to secure the critical mass of non-academic stakeholders from, e.g. healthcare facilities, administration and the industry, the current network will promote further growth of the consortium, by reaching out to relevant stakeholders in the respective countries of the Action (see. 2.2.2). The networks and knowledge of the Action will be utilised to identify additional relevant participants in a snowballing and purposive sampling process, i.e. a process in which Action Members will employ individual networks and judgment when recruiting new Action members.

This COST Action already has, at the proposal stage, several proposers in contact with the care sector, who are thus accustomed to recruiting persons with dementia and formal or informal carers, through ongoing collaboration with the care sector in the respective contexts of the Action Members.

In addition, a dedicated part of WG2 will ensure that strong collaboration and knowledge transfer with the non-academic stakeholders of the Action will be established. The network will thereby function both as a platform for academic discussion of ethical dilemmas, and actively engage non-scientific stakeholders or experts in dementia care, since they, as representatives from the affected target groups, possess privileged insights into dementia.

The Action will actively encourage new members, representing gaps, both in terms of geography, knowledge and expertise, to participate in the Action on the Action’s webpage.

2.2.2. INVOLVEMENT OF STAKEHOLDERS

The Action is designed following a bottom-up approach, and consequently has a strong focus on involving relevant stakeholders other than academic researchers working within the field in all phases of the project. Key stakeholders include:

• People with dementia
• Informal caregivers: relatives and other non-professional carers
• Formal caregivers, typically health and social care professionals and direct care workers
• Small and medium-sized enterprises specialised in dementia care, including dementia
  technology
• Representatives from care facilities (both public and private)
• Local or governmental bodies of oversight and policy
• Relevant patient associations and NGOs within the field

To ensure a balanced representation of all main interests, views and opinions on ethics in dementia care, the Action will apply a three-string approach to stakeholder engagement23:

• First, the Action will make use of a continuous process of purposive sampling to involve key stakeholders already known to members of EDEM. These stakeholders will be classified according to an interest-influence matrix along two dimensions; interest in the subject at hand, and influence in the processes involved, thereby allowing the identification of key stakeholders that should be targeted, and ensuring that the different voices are represented. Identified stakeholders will be invited by mail and personal contact.
• Secondly, the Action will use the snowball method to further include relevant stakeholders. Proposers will reach out to stakeholders known to them in their respective countries and these will in turn assist in reaching out to other relevant stakeholders, ensuring that informal caregivers also have a say. Stakeholders that have been identified will be invited by mail and personal contact.
• Thirdly, EDEM will make use of open calls. The Action will invite stakeholders to join the network on its website, as well as on proposers ́ websites, and Action members will be encouraged to post open calls on social media like LinkedIn and Twitter.

The Action will, moreover, promote ongoing stakeholder engagement and involvement by organising the exchange of ideas and needs by the following means:

• Organising scientific meetings and workshops with relevant stakeholders to achieve insight into their perspectives and accommodate needs.
• Establishing a dialogue with public and private care providers and other relevant stakeholders to continuously test the importance of identified dilemmas and ethical principles with practice.
• Collaborating with and creating awareness of the Action among relevant national and international NGOs and interest groups within the field.
• Establishing a network stakeholder advisory board (cf. section 3.2.2 – the plan for dissemination, exploitation and dialogue with the general public or policy).

The abovementioned approach will be operationalised into a detailed stakeholder engagement plan as part of WG2 (see 4.1.1 WG2).

2.2.3.MUTUAL BENEFITS OF THE INVOLVEMENT OF SECONDARY PROPOSERS FROM NEAR NEIGHBOUR OR INTERNATIONAL PARTNER COUNTRIES OR INTERNATIONAL ORGANISATIONS

This Action does not intend to include secondary proposers from non-COST countries. However, international collaboration will be part of the stakeholder engagement plan of EDEM.

3.1. IMPACT TO SCIENCE, SOCIETY AND COMPETITIVENESS, AND POTENTIAL FOR INNOVATION/BREAKTHROUGHS

3.1.1. SCIENTIFIC, TECHNOLOGICAL, AND/OR SOCIOECONOMIC IMPACTS (INCLUDING POTENTIAL INNOVATIONS AND/OR BREAKTHROUGHS)

This Action aims to promote ethical dementia care by identifying ethical problems in dementia care in different European contexts and settings, and fostering broad knowledge exchange across the network and Europe in general.
Advances in both dementia ethics research and improvements in quality and homogeneity of dementia care across Europe are essential in promoting dignity, autonomy and quality of life for people with dementia across Europe.

The Action is expected to have the following short- and long-term impact within the Action ́s aims:

SHORT-TERM IMPACT

• Improved awareness. The Action creates awareness about ethical issues in dementia care and promotes the dignity, autonomy and quality of life of people with dementia, especially among participating nursing homes.
• Better care. The Action provides formal and informal caregivers with innovative tools to assist them in their everyday work. This will create better workflows at participating nursing homes and better in-home care among several informal caregivers.
• Improved working environment. The action will lead to an improved work environment at participating nursing homes. This will reduce burnout and moral distress among informal and formal caregivers.

• Policy agenda-setting. The Action will help put dementia care and ethics on the political agenda in several European countries.
• Improved European research collaboration. The Action will be a strong force in advancing the European research agenda on ethics in dementia care, as the EDEM network will facilitate research collaboration across countries.

LONG-TERM IMPACT

• Improved ethical focus at nursing homes. The Action ́s tool-kit has more broadly been integrated into the operation of a number of nursing homes across Europe. As a consequence, the dignity, autonomy and quality of life of people with dementia at these nursing homes has improved.
• Improved care-competences. Innovative tools for tackling ethical dilemmas in dementia care, i.e. nursing home care and home-based care, have been developed and implemented in the curricula of informal and formal caregivers across Europe.
• Reduced burnout and distress. Fewer informal and formal caregivers experience burnout and moral distress and the general work environment at adult daycare centres, nursing homes etc. has improved
• Fewer sick days. Better work environments at care facilities and quality of life among people with dementia lead to fewer sick days among personnel and ensure more efficiently run care facilities.
• Policy impact. The ethical framework and white paper of the Action has become part of the health policy agenda in several European countries.
• Scientific development. The network has grown and become established. A vibrant research agenda and a solid research collaboration on ethics in health have been established. New projects and research goals have been designed and young researchers have been recruited to the field.

3.2. MEASURES TO MAXIMISE IMPACT

3.2.1. KNOWLEDGE CREATION, TRANSFER OF KNOWLEDGE AND CAREER DEVELOPMENT

The Action will be led by a Management Committee (MC) which will consist of MC Coordinators from participating countries and Working Groups (WGs). The MC will oversee that a plan for knowledge creation, transfer and career development will be established and adequately implemented throughout the Action. The MC will meet once a year, during which measures to maximise scientific and practical impact, e.g. coordination of activities, scientific meetings or possible cooperation, will be discussed and tasks within respective WGs distributed.

Knowledge creation: EDEM will provide a narrative overview of scientific literature on ethical dilemmas in dementia care and of existing ethical frameworks, and generate new perspectives on ethical dilemmas in dementia and how to manage them. This will generate new research ideas, a new framework for understanding ethical issues in dementia care, policy recommendations on how to manage them and new partnerships, both within and outside the Action. The interdisciplinary expertise of the network will identify and seek to close existing knowledge gaps, in establishing cross border and bottom-up collaborations in dementia care.

Knowledge transfer: The Action is based on a citizen science approach. Hence, it requires that all stakeholders, including scholars, policy decision-makers and caregivers, are a part of all phases of the network to identify and analyze central dilemmas, design recommendations and develop a toolkit for educating formal caregivers and supporting informal caregivers. This integration of sectors and of theory and practice in the structure of the network secures future knowledge transfer between sectors and between theory and practice. Not only will this approach enhance the quality of the outputs of the network and its impact; it will also promote practical and policy uptake of the project results for the benefit of people with dementia and caregivers across Europe. To promote this political uptake, the Action will seek to contribute to public consultation exercises by local Government Departments, correspond directly with local MPs and Peers and in general opportunistically engage in debates and campaigns.

Career development: The aim is to maximise individual potential among network members through relevant training. All training will be delivered within an equity framework to ensure equal access to opportunities for learning, regardless of gender and other personal characteristics and circumstances. As the Action is based on both research and practice, the career development approach has two focus areas:

• Academia – engage young researchers and provide them with the opportunity to improve their research skills through an approach that pays attention to both theory and practice.
• Non-academia – engage informal and formal caregivers and provide them with novel skills and practices that are founded in research.

A senior member of the network will have designated responsibility for designing and monitoring this aspect of the overall activity. and will ensure it is an agenda item at all relevant network meetings. Each network member will consider their potential contribution to these in terms of specialist training reflecting their areas of expertise for individual activities. The person in charge of career development will be entitled to encourage, promote, and help plan research visits and workshops among members.

3.2.2. PLAN FOR DISSEMINATION AND/OR EXPLOITATION AND DIALOGUE WITH THE GENERAL PUBLIC OR POLICY

The dissemination plan of the Action will be developed according to the Guidelines for the communication, dissemination and exploitation of COST Action results and outcomes. The Action’s dissemination strategy will be managed by the Action’s Communication Manager, reporting to the Management Committee (MC). All Action participants contribute to the dissemination and communication of the Action. At the onset of the Action, the MC will appoint the Communication Manager as well as a Communications Officer for each Action member country. Communication Officers will encourage local level dissemination to all relevant stakeholders, e.g., policy decision-makers, the industry, NGOs, and nursing homes.

The Action will disseminate its results via appropriate recipient-oriented outlets to maximise the impact among stakeholders. Since each of the general public and policy decision-makers must be approached differently according to their interests and affiliations, the Action will apply multiple communication tools and strategies, which will be specified in the final dissemination plan of the Action. Hence the main scope of dissemination and exploitation is dual, and each part is of equal importance:

• Policy outreach: The Action targets the EDEM policy recommendations to relevant policy makers in each Action Member Country, and to as many relevant European NGOs, industries, and media as possible.
• Communication with the public: Dissemination and dialogue with the general public. The main public stakeholders include people with dementia, informal and formal caregivers, nursing homes, health professionals, NGOs and citizens.

The Action will make use of the following three communication channels to reach its public and policy stakeholders:

• Website directed at policy and public stakeholders
• Communication to policy decision-makers
• Communication to the public

Website: At the onset of the Action, a dedicated COST Action website will be set up, acting as the Action’s main dissemination outlet and tool for dialogue. Content will be posted on the website as the Action progresses. It will comprise a primary site in English with general information for all stakeholders, and secondary sites in native languages for each participating country. The Actions Communication Manager will be responsible for maintaining the primary site and from each participating country a local Communication Officer will be responsible for maintaining their specific country site.

At the main site, news on the start-up, process and results of the network will be announced. This news will include:

• Start-up: A presentation of the COST Action, its objectives and Working Groups (WGs) as well as WG managers and other officials
• Ongoing activities: E.g. reports on STSMs’ activities, information and news on relevant symposia and conferences, publications and events and an interactive platform for Action members, e.g. in SharePoint format
• Network results: These will include the developed ethical framework, a white paper with policy recommendations, the toolkit for formal and informal caregivers, publications etc.

At secondary sites, country representatives will be able to communicate with national stakeholders and the general public. Here they can post news that may only be relevant to their country, engage with national policy stakeholders and inform the public stakeholders about network activities, including announcements of national workshops and events.

Communication to policy decision-makers: The Communication Manager and the local Communication Officers will ensure targeted communication to policy stakeholders. This includes developing strategies for contributing to public consultation exercises by local Government Departments, corresponding directly with local MPs and Peers and opportunistically engaging in societal health policy debates and campaigns24.

Communication to the public: This channel will be directed at engaging public stakeholders, including dementia interest groups and patient organisations through, for example, the following exploitation and dissemination activities:

• Establishing a presence on professional social media networks such as LinkedIn and Twitter
• Online content, e.g. YouTube videos
• Communicating and presenting the Action’s activities and results via national outlets
• Publishing content in non-scientific outlets, e.g. dementia communities on Facebook, newspaper articles, trade magazines, (e.g. patient organisation newsletters and membership magazines) or local/national TV spots and other appropriate social media.
• Presenting the Action’s activities and results at relevant conferences and seminars.
• Hosting inclusive stakeholder workshops throughout the Action.

WG5 will be designated to coordinate Communication and Dissemination oversight and will
be led by the Action Communication Manager and attended by the Communication Officers, representatives from all WGs and relevant dementia care stakeholders.

4. IMPLEMENTATION

4.1. COHERENCE AND EFFECTIVENESS OF THE WORKPLAN

4.1.1. DESCRIPTION OF WORKING GROUPS, TASKS AND ACTIVITIES

EDEM will be organised in accordance with the COST Action structure described in the SESA Guidelines. It will consist of a management committee (MC) of the Action responsible for supervising the appropriate use of funds, coordinating activities, expanding the network, knowledge creation, transfer of knowledge and career development and managing results. The MC consists of up to two representatives of each COST Full Member that has accepted the Memorandum of Understanding. The Action will also include a number of positions assigned with the responsibility for promoting keyfocus areas in the Action. These positions include:

• A dissemination and outreach manager
• An early-stage research manager
• An equal opportunities manager

To engage key stakeholders, the Action will also consider setting up an advisory board consisting of relevant NGOs, industry and policy decision-makers, e.g. representatives from Interdem, Alzheimer Europe, national health authorities etc. The advisory board will function as a sparring partner on implementation strategy, communication strategy, design of outlets etc.

The EDEM objectives will be achieved through 5 Working Groups (WGs). All members of the Action will be encouraged to join two or more of the WGs, corresponding to their know-how and scientific interests. The tasks of the WGs will foster mutual knowledge of one another and move toward attaining the common aim of the Action. WG 1 and 2 will run consecutively and merge into WG3 when the deliverables of the WGs have been delivered.

Working groups:

WG 1: Mapping of existing knowledge
The objective of this WG is to map existing ethical frameworks focused on ethical dilemmas in dementia care, as well as relevant scientific literature and grey literature dealing with ethical issues in dementia care. Findings will be discussed among WG members at regular WG meetings. The WG will result in a state-of-the-art narrative overview of relevant literature and frameworks, which WG 3 can draw on in its work towards developing a practical European ethical framework for dementia care and recommendations on how to implement it.

WG 2: Mapping of ethical dilemmas
The objective of WG2 is to incorporate perspectives from relevant stakeholders into the process of developing a practical European ethical framework and recommendations on implementation. The WG will promote stakeholder involvement and facilitate interdisciplinary collaboration among research institutions, patient associations, industry, political institutions, caregivers and people with dementia. The WG will inform and qualify discussions and design of tools with real-life experiences, and hence enhance the practical appropriateness of the deliverables of the Action.

WG 3: Ethical framework
The objective of WG3 is to synthesise results from WG1 and WG2 and create a proposal for an integrated practical European ethical framework and recommendations on how to implement it in different cultural healthcare settings.

WG 4: Education
The objective of WG4 is to develop an EDEM educational toolkit that enables formal and informal caregivers to incorporate ethical perspectives and concepts in their care of people with dementia.

WG 5: Dissemination
The objective of WG5 is in part to communicate and disseminate scientific information via publication outlets, aimed at a general public, and in part to present policy makers with key outcomes of EDEM’s work, hence maximising the outreach of EDEM’s work for the benefit of dementia care stakeholders. EDEM will encourage and help Open Access publishing.