The 2015-2017 framework programme of Alzheimer Europe aims to achieve the following objectives:
1. Increasing knowledge about current national dementia policies and strategies, in order to promote best practices and reduce inequalities in dementia care in Europe (dementia-friendly communities, legal capacity and proxy decision making, care standards and care services for people with dementia and their carers),
2. Promoting collaboration and exchange on ethical issues linked to dementia through the organisation's European Dementia Ethics Network (Ethical challenges faced by professional carers, the changing definition of Alzheimer's disease and disclosure of risk information, societal obligations to people with dementia and their carers),
3. Improving the involvement of people with dementia in EU activities through the active consultation and involvement of the European Working Group of People with Dementia,
4. Improving the information exchange on dementia through the setting up of a European Dementia Observatory and the organisation of an Annual Conference,
5. Capacity building for national Alzheimer associations via the organisation of an Alzheimer Association Academy,
6. Ensuring effective governance.
The organisation's activities are fully aligned with the European Commission Communication on a European initiative on Alzheimer's disease and other dementias which recognised that "the importance of these conditions has long been recogned at a European level has long been recognised at a European level" and will provide important support to the growing number of Member States that are implementing or developing national dementia strategies. The work plan also addresses the priority identified in the third health programme of "support[ing] cooperation and networking in the Union in relation to ]...] improving the response to chronic diseases including [...] neurodegenerative diseases, by sharing knowledge, good practices and developing joint activities.
According to the World Health Organisation (WHO) “the physical and social environments are key determinants of whether people can remain healthy, independent and autonomous long into their old age.” As a result, the European Innovation Partnership on Active and healthy Ageing has dedicated a priority action to the development and implementation of age-friendly environments. In parallel, a number of countries (amongst others Belgium, Germany, Ireland, United Kingdom) have developed the concept of dementia-friendly communities to support people with dementia, to ensure they can live for longer in their communities, to foster social inclusion and to combat stigma. As part of its 2015 Work Plan, Alzheimer Europe (AE) compared already existing dementia strategies and policies which promote health and foster supportive environments for people living with dementia with a particular focus on dementia-friendly communities. The inventory was done with the aim of identifying and promoting good and best practices in this field.
An influential report by the Nuffield Council on Bioethics found that “People with dementia, and those who care for them, face difficult ethical dilemmas on a day-to-day basis”. As part of its 2014 operating grant, AE built on this work by identifying ethical dilemmas faced by informal or family carers of people with dementia and by producing a report with commentaries on those ethical dilemmas.Professional healthcare providers and caregivers similarly face ethical challenges on a wide range of issues: the disclosure of a diagnosis, restraint, the interaction with healthcare guardians, the use of assistive technologies, dealing with the needs of people with dementia and those of their carers, abuse and end-of-life issues. As part of its 2015 Work plan, AE therefore carried out a literature review on these issues, identified case studies and vignettes of ethical dilemmas experienced by professional caregivers and provided an ethical commentary on those.
The Commission Communication on a European initiative on Alzheimer’s disease and other dementias identified a number of underdeveloped policy and research areas. In particular, the Communication highlighted that “insufficient attention is paid to rights of people suffering from a cognitive deficit” and stated that “Alzheimer’s associations should ensure that patients are duly consulted”. In the field of “service user” or “citizen involvement”, there is widespread recognition of the benefits of ‘such involvement in public policy, both at an individual and collective level. Even if the language of involvement has been used in the dementia field in a similar way to that used by the disability sector, it is undeniable that involvement activities only started in the last 10 year and are much less widespread. AE’s European Working Group of People with Dementia with a membership from 10 different Alzheimer associations and countries is therefore an innovative and absolutely central part of the organisation’s activities in 2015 and ensured that the views of people with dementia were duly integrated in all AE projects and activities. In addition, a mapping exercise of existing national initiatives was undertaken with the aim of developing recommendations to improve the involvement of people with dementia in policy development and other activities, meetings and conferences.
The Commission Communication also highlighted the existence of good practices in the field of dementia care and treatment, however the European Commission also noted that “they are not being shared throughout the Union”. As part of its 2015 Work Plan, AE therefore aimed to improve the information exchange between the European and national level, as well as between Member States. The organisation’s aim of developing a European Dementia Observatory supported the inventory of new research, practices and policy in the field of dementia, the identification of emerging g
The various activities of the 2015 Work Plan were carried out by the staff of Alzheimer Europe under the supervision of the organisation’s Executive Director. Regular progress updates were provided to the Board of Directors who monitored the organisation’s activities and finances.
In addition, AE was able to rely on a number of additional groups for support and advice:
• AE set up an Expert Advisory Panel of researchers and academics. The general aim of this group was to advise AE on medical and scientific developments and to provide a commentary on research news identified as part of the organisation’s European Dementia Observatory. The group also supported the development of the organisation’s first research digest which provided an overview of key research developments. The panel also supported the organisation of the Annual Conference by recommending topics and speakers and by helping with the evaluation of all submitted abstracts.
• AE also set up a specific working group for its priority programme on ethical challenges faced by professional carers of people with dementia and made sure to adopt a multi-disciplinary and multi-national approach when selecting organisations and experts to involve.
• For the organisation of its Annual Conference in Ljubljana, AE had created a small organising committee tasked with organisational and financial aspects linked to the conference venue, the social programme and all practical aspects. For its collaboration with the national Slovenian Alzheimer’s association on these aspects, AE has developed comprehensive conference guidelines detailing the respective roles of the European organisation and the local host association.
1. Increasing knowledge about current national dementia policies and strategies, in order to promote best practices and reduce existing inequalities in dementia care in Europe
In 2015, AE:
• Carried out an inventory of policies and practices across Europe that foster supportive environments for people living with dementia with a particular focus on dementia-friendly communities
• Analysed the differences and commonalities in the development of dementia-friendly communities and produced a comparative report (2015 Dementia in Europe Yearbook: Is Europe becoming more dementia-friendly" with the key findings
• Identified over 50 good and innovative practices in the field of dementia-friendly communities and initiatives.
2. Promoting collaboration and exchange on ethical issues linked to dementia
In 2015, AE:
• Dedicated the work of the European Dementia Ethics Network to ethical challenges faced by professional carers of people with dementia and carried out an extensive literature review on this subject
• Set up a multi-disciplinary working group with ethical experts, professional carers and people with dementia
• Identified case studies and vignettes about ethical challenges experienced by professional carers
• Drafted and published a report with ethical commentaries on the identified case studies and recommendations on dealing with ethical challenges experienced by professional carers
3. Improving the involvement of people with dementia in EU activities
In 2015, AE:
• Organised three meetings of the European Working Group of People with Dementia with representatives from nine member organisations
• Consulted the European Working Group on all activities carried out in the framework of the operating grant
• Carried out an analysis of national involvement practices and identified 15 best practices in this field
• Developed a report with 12 recommendations on promoting the involvement of people with dementia
4. Improving the information exchange on dementia through the setting up of a European Dementia Observatory and the organisation of an Annual Conference
In 2015, AE:
• Continued to monitor and report on scientific and policy developments at a national and EU level in the field of dementia as part of its role of European Dementia Observatory
• Covered a total of 607 dementia-related news and published these in 11 monthly e-mail newsletters and on the Alzheimer Europe website
• Involve its Expert Advisory Panel to provide comments on breaking scientific stories and produced a Research Digest with key scientific developments
• Organised a conference in Ljubljana, Slovenia under the motto “Dementia: putting strategies and research into practice” with a participation of 572 participants from 44 countries
5. Capacity building for national Alzheimer associations
In 2015, AE:
• Carried out a survey of its member organisations to identify training needs of staff and volunteers of national Alzheimer associations
• Identified best practices and speakers in the fields of involving people with dementia in national associations, using social media and of involving national Alzheimer associations in research
• Organised its first Alzheimer Association Academy on 1 and 2 December 2015.
6. Ensuring effective governance
In 2015, AE:
• Organised four meetings of the Alzheimer Europe Board and actively involve the Board in the monitoring and evaluation of the organisation’s activities
• Organised an Annual Meeting of its member organisations in the framework of the Annual Conference in Ljubljana
• Carried out a user satisfaction survey of its member organisations on the activities of the association carried out in the framework of its previous operating grants
• Developed and adopted a new Strategic Plan for its activities in 2016 to 2020
When reporting on the progress beyond the state of the art, this report focuses only on the two key work packages of the 2015 operating grant which carried out an in-depth literature review and resulted in the publication of a detailed report with identified best practices and recommendations for future action.
1. Increasing knowledge about current national dementia policies and strategies, in order to promote best practices and reduce existing inequalities in dementia care in Europe
The term dementia-friendly communities has emerged in recent years and has rapidly attracted attention from local and national governments, Alzheimer’s organisations and academics in Europe. This new concept seems to reflect a shift from understanding dementia as a medical condition to a broader conceptualisation of the term. This way of understanding dementia, goes beyond the responsibility of health and social care services and professionals, and incorporates the whole community. It aims to challenge the stigma, inequalities and isolation often associated with living with dementia, so that people with dementia are no longer considered special or unengaged, but as having an active role in their communities. The concept of DFC is then of great relevance to people with dementia and their families, and emphasises key issues such as the need to involve people with dementia, raise awareness of dementia and promote a more positive image of dementia and the need to engage the full community in the support provided to people with dementia.
Despite this, at the time of writing the report (2015 Yearbook), several experts had raised the concern that applying the concept of friendly communities to dementia was problematic due to the lack of literature on the topic and the outwardly diverse ways in which the idea has been used ( for example see Prior, 2012). Whilst a number of reports had been produced in recent years, most the available literature was written and based on the experiences of developing DFCs in the UK. At the time of starting this report, there was no literature available describing and comparing the movement of DFC across Europe. The 2015 Yearbook provides an overview and several examples of countries in Europe that are using different approaches in their work but that share the same common goal of ensuring that people with dementia can live meaningful lives and that they feel respected, treated with dignity, safe and included as much as they wish in their communities. The work presented in this report is also innovative as the existing framework developed by the WHO in 2007 for Age Friendly Cities, has been used and adapted to dementia and the Yearbook provides examples of national policies and notable practices in Europe addressing the core principles that underpin the WHO framework.
The implementation of DFC throughout can have a critical impact in the lives of several people with dementia. If communities are more dementia friendly, this could prevent many people with dementia from unnecessarily accessing health or residential care and support them to live longer in their own home (rather than, for example, having to be placed in residential care). This is important as the estimated cost of residential care in dementia accounts for more than 40% of the total cost of dementia (Wimo and Prince, 2010),
2. Promoting collaboration and exchange on ethical issues linked to dementia
Caring for people with dementia in an ethical manner is not an option but a fundamental component of good care. However, whilst important ethical concerns have been amply addressed in the literature on dementia care, the actual provision of ethical dementia care varies considerably. At the same time, ethical care cannot focus entirely on the person with dementia to the detriment of the interests and wellbeing of other key actors. In everyday practice, it can sometimes be a challenge to care for people with dementia in an ethical manner and health and social car
As indicated in the section above dedicated to the work performed during the reporting period, Alzheimer Europe was able to achieve all expected outcomes. There were no major deviations between the actions undertaken and the original work plan.
In the planning and execution of its various activities, Alzheimer Europe did not experience any particular difficulties and none of the risks identified in the risk management plan materialised. However, some timing issues needed to be addressed which had a minor impact on the calendar of events organised in the course of 2015:
• The initial date of the Alzheimer Europe Conference needed to be changed when it became clear that another important dementia conference would take place in Berlin at the same time. As a result, the conference was moved to early September where it did not clash with any other relevant European conferences.
• Based on the feedback of national member organisations, it was decided not to organise the Alzheimer’s Association Academy as part of the organisation’s Annual Conference. National delegates had indicated that they wanted to attend scientific sessions organised in parallel at the conference and that it would be difficult to opt for the specific workshops of the Academy. As a result, it was decided to organise the Alzheimer’s Association Academy in December as a stand alone event.
• The terrorist attacks in Paris and the ensuing security alert in Brussels at the beginning of December had an impact on the organisation of the Alzheimer’s Association Academy as a number of participants decided to cancel their participation.
1. Dissemination
Dissemination was an integral part of the organisation’s 2015 activities and the newsletter and website were key dissemination tools.
AE’s website continued the trend of increasing its website visitors each year, with more visitors in 2015 than in previous years. The website attracted 23.5% more visitors, with the total number of unique visitors increasing from 597,393 in 2014 to 737,858 in 2015.
Also in 2015, AE continued to step up its social media presence, particularly on Twitter and Facebook. Based on advice from social media experts, AE decided to convert its Facebook account to a Facebook page, which is better suited to organisations and companies, as opposed to individuals. AE’s previous Facebook account had already reached the maximum 5,000 friends in 2014, which were converted to “likes” on its new page. This had increased to 5,873 likes as at the end of 2015.
As for Twitter, the association had reached 4,034 Twitter followers at the end of 2015 (2,200 in 2014) and had tweeted 1,479 times (583 in 2014). Social media has become a daily part of AE’s activities and an integral part of communications related to the Annual Conference, as well as other events and projects. The 2015 conference hashtag #25AEC had over one million “tweet impressions”, meaning that this huge number of Twitter users had access to information about AE and its conference. All AE team members who are involved in projects and attend AE events are now active Twitter users, tweeting from events where they represent the organisation. The total number of Tweets by AE and its team members in 2015 was 2,707 and tweet impressions reached over 1.9 million. Twitter is also used by AE as a means to increase website traffic, which likely explains the further increase in the number of “unique visitors” to the website in 2015 as compared with 2014.
Finally, for two key reports, namely the 2015 Yearbook and 2015 ethics report, 3,000 copies were published and disseminated through Alzheimer Europe to Members of the European Parliament and other European institutions and through AE’s national member organisation to key national opinion leaders.
2. Evaluation
The evaluation of its 2015 activities was also an essential part of the organisation’s 2015 work plan. A separate deliverable D5.6. Evaluation report provides an analysis on whether and how AE reached the various indicators included in the operating grant agreement.
In addition, Alzheimer Europe carried out a membership satisfaction survey of its past activities and conducted user surveys of the participants of its 25th Annual Conference in Ljubljana and its first Alzheimer’s Association Academy. These reports are included as annexes to the overall evaluation report.