The key objectives of Alzheimer Europe's 2017 operating grant are:
- the inventory and comparison of care standards for care services for people with dementia and their carers and the publiciation of results in the 2017 Dementia in Europe Yearbook,
- the analysis of ethical issues linked to societal obligations to people with dementia and the development of a rights-based approach to dementia and the development of ethical recommendations,
- the continued involvement of people with dementia in all operating grant activities with a particular focus on collaborating with the 2nd Joint Action on dementia to ensure views of people with dementia are fully taken into account in recommendations and best practices identified by Joint Action,
- the further development of the European Dementia Observatory monitoring scientific and policy developments in the field of dementia,
- the organisation of a successful Annual Conference in Berlin under the motto "Care today, cure tomorrow" attracting at least 500 participants,
- the support of national Alzheimer's associations through the capacity-building workshops of the Alzheimer's Association Academy and the provision of good governance to the operating grant activities.
There is a lack of knowledge about people living in residential care facilities who have dementia. A number of European projects and initiatives have looked at different aspects of long-term care in Europe and have tried to address some of these challenges (i.e. ANCIEN project, WeDo, PACE, etc.) but not with a focus on the needs of people living with dementia. The information collected by AE provides an overview of the current standards and the existing inequalities and gaps in care provision in several Member States. This work can thus contribute to identify and reduce existing inequalities in dementia care in Europe. It has also helped to identify and disseminate good practices in residential care in Europe.
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 public and patient involvement (PPI) 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 years and are much less widespread. AE’s European Working Group of People with Dementia with a membership from 11 different Alzheimer associations and countries is therefore an innovative and absolutely central part of the organisation’s activities in 2017 and ensured that the views of people with dementia were duly integrated in all AE projects and activities.
Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. In 2017, AE together with the EWGPWD and INTERDEM published an article in a peer reviewed Journal about PPI and dementia. The article (entitled “Alzheimer Europe's position on involving people with dementia in research through PPI”) highlights some of the main challenges and potential risks and benefits associated with such meaningful involvement. It addressed several important topics such as: planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research. The growing awareness of the importance of PPI for dementia research will undoubtedly lead to more opportunities for people with dementia to contribute towards society by helping improve the quality, relevance and ethical conduct of dementia research.
The 27th Alzheimer Europe Conference (#27AEC) took place from 2-4 October 2017 in Berlin, Germany and was organised together with Deutsche Alzheimer Gesellschaft, the German Alzheimer’s association.
The event was organised under the theme of “Care today, cure tomorrow” and was attended by 742 participants from 41 countries, including 38 people with dementia. The programme featured 181 speakers delivering oral presentations and 216 poster presentations.The opening ceremony had participation from representatives of the Berlin Senate and the German Ministries of Health and for Family Affairs, Senior Citizens, Women and Youth. The four plenary sessions were dedicated to “Living with dementia”, “ Dementia care in the 21st century”, “Improving the dia
The 2016 activities were carried out by the staff of Alzheimer Europe under the supervision of the organisation’s Executive Director who was supported by 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 significant research news identified as part of the organisation’s European Dementia Observatory. The group also supported the development of the organisation’s 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.
For the work developed as part of the comparison of existing standards (Yearbook 2018) an overview of the relevant literature is provided in the report and was used to inform the development of the questionnaire. In addition, a total of 73 experts from 29 European countries contributed by providing information and later on feedback on the draft report. All suggestions and changes were taken into account and incorporated in the report. The final version of the published report was approved by the participating experts. The most relevant findings of the work will be published in a peer reviewed open access Journal in 2018.
AE also set up a specific working group for its priority programme to reflect on the implications of considering dementia as a disability for ethics, policy and practice, and made sure to adopt a multi-disciplinary and multi-national approach when selecting organisations and experts to involve. In addition to Dianne Gove and Jean Georges from Alzheimer Europe, experts who took part in the project had relevance expertise in a broad range of relevant domains such as ethics, philosophy, disability, dementia (including living with dementia), psychology, policy development, mental health, legislation and anthropology. The experts conducted a review of the scientific literature on the topic in several databases (i.e. PsychARTICLES, Medline, Psychology & Behavioural Sciences Collection, CINAHL Plus with Full Text, PsychINFO and the database of the American Journal of Bioethics). All abstracts were reviewed for their relevance to the topic. In addition, a search was made of the grey literature and the working group drew on articles obtained in the course of its previous ethics work and consulted people with dementia in the context of public and patient involvement in order to gain their perspectives and learn about their experience of dementia as a disability.
AE identified six key objectives for its multiannual work programme (2015-2017) which built on the results of its previous operating grants.
In 2017, the organisation focused on the following objectives and implemented the following actions:
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 2017, AE:
• Collected information on national provisions for care for people with dementia in Europe with a focus on identifying innovative policies and interventions,
• Identified existing care standards for healthcare services for people with dementia and their carers
• Analysed differences and commonalities in care provision and standards across Europe and produced a comparative report with the key findings
• Identified good and innovative practices and relevant gaps in these policies and practices.
2. Promoting collaboration and exchange on ethical issues linked to dementia
In 2017, AE:
• Identified the ethical issues linked to the recognition of dementia as a disability and the development of a rights-based approach to dementia as a priority of its European Dementia Ethics Network
• Brought together ethical experts, human rights experts, policy makers as well as people with dementia and carers in a working group to discuss the literature and contribute their expertise in order to develop a discussion paper on the subject
• Developed a formal position to promote a rights based approach to dementia from an ethical perspective and published the discussion paper and AE position in a report
3. Improving the involvement of people with dementia in EU activities
In 2017, AE:
• Ensured that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia comprised of 11 people with dementia from 11 AE member organisations
• Organised four meetings of the group and provided a forum for people with dementia at the organisation’s Annual Conference
• Collaborated closely with the EU Joint Action on Dementia and provided a report outlining the input of people with dementia on the reports and recommendations on timely diagnosis and post-diagnostic support, residential care and dementia-friendly communities
4. Improving the information exchange on dementia by developing its European Dementia Observatory
In 2017, AE:
• Further developed its European Dementia Observatory by closely following and reporting all scientific and policy developments in the field of dementia on its e-mail newsletter and website
• Produced a Research Digest highlighting the key scientific developments in the dementia field in collaboration with the organisation’s Expert Advisory Panel
5. Organising an Annual Conference
In 2017, AE:
• Organised a conference in Berlin, Germany under the motto “Care today, cure tomorrow” with the participation of 742 participants from 41 countries
6. Capacity building for national Alzheimer associations and effective governance
In 2017, AE:
• Brought together representatives of the national Alzheimer associations for three capacity-building workshops including a meeting of the Alzheimer’s Association Academy
• Continued to fully involve the organisation’s Board in the monitoring and evaluation of all activities and finances
• Organised an Annual Meeting of its member organisations in the framework of the Annual Conference in Berlin
The quality of residential care is an important topic and one that is of concern for many Member States. In the European Union, it is estimated, that the number of people who may potentially need long-term care services will increase by 30% between 2013 and 2060. Whilst, older people are not the only citizens who may need long-term care, they are more likely to need it due to potential frailty and co-morbidities. The 2017 Yearbook provides an overview of the existing care standards and regulatory requirements that residential care facilities need to meet. It addresses key areas that have a great impact on the lives of residents, namely, the physical environment, the staff providing care, health and social care and human rights, end-of-life care and abuse and restraint. It identifies good practices but also several important oversights with regard to how dementia is currently addressed in frameworks and standards in Europe. These gaps and oversights can be useful in advancing the understanding of this topic and improving the standards of care and the quality of life of people with dementia in residential care. This information can be very valuable for policy makers at European and national level. The 2017 Yearbook is also relevant to healthcare professionals working on residential care settings. It provides an overview of the ratios, qualifications and training required to the staff working in these settings (e.g. manager, care assistants and nurses) across Europe. Also, and as described in the previous section, it provides several examples of good practices and important gaps in the different areas. Dementia training on challenging behaviours and supported decision making are extremely important for the staff providing care and could also have a great impact on the lives of residents. Other relevant information which could have a direct impact on the daily practice of health professionals working in residential care are end-of- life care and the use of restraints. These two areas are identified in the report as the most important gaps in existing standards. This is an important oversight as these professionals need to provide care to people with dementia who will spend their last days of life and die in these settings. The gaps and good practices described in the Yearbook could help professionals to get a better understanding of this and encourage them to further develop initiatives in these areas.
The discussion paper on the implications for ethics, policy and practice of considering dementia as a disability will hopefully have a direct impact on policymakers at EC, MS, regional and local level and could be a helpful resource in all aspects of decision making related to the care, treatment, support and equal involvement of people with dementia in society. The discussion paper on the implications for ethics, policy and practice of considering dementia as a disability will hopefully have a direct impact on health professionals in their daily practice. Perceptions of disability have changed over the last five to six decades. The modern disability movement, which began in the 1960s in America, was about people with disabilities coming together to fight for a common cause and to bring about changes in their lives. At the outset, there was a strong emphasis on physical disability. Nowadays, we recognise that disability can arise from impairments experienced by people with a wider range of conditions. Through our work, we emphasise that dementia can also be a disability. The founders of the disability rights movement called for the de-medicalisation of disability and de-institutionalisation, including a quest for social, economic and political recognition and the gradual expansion to include people with other disabilities. This gave rise to the emergence of the social model of disability as an alternative to the dominant medical model. However, many people with cognitive disabilities found self-advocacy more difficult. This may ha
Alzheimer Europe was able to carry out all the actions included in the organisation’s 2016 Work Plan and produce all deliverables. The support of national member organisations in providing information on their countries and supporting the dissemination of results was particularly important and a significant strength of the organisation which can count on dedicated staff in the central office, but also an impressive network of engaged volunteers and staff members in European countries.
The following key publications were produced during the action.
• Dementia in Europe Yearbook 2017. Standards for residential care facilities in Europe?
• Dementia as a disability? Implications for ethics, policy and practice – a discussion paper
• Alzheimer Europe 2016 Annual Report
• Alzheimer Europe monthly Newsletter
• Conference programme and abstract book of 27th Alzheimer Europe Conference in Berlin, Germany
• Alzheimer Europe website: http://www.alzheimer-europe.org/
The yearbook, ethics report and annual report were distributed to a mailing list of Alzheimer Europe comprising over 2,700 contacts, including all Members of the European Parliament, key representatives of the European Commission and national health and social affairs ministries, national member organisations of Alzheimer Europe and other interested stakeholders. National member organisations support the dissemination efforts for these publications at national level. Finally, a smaller number of copies is sold via the AE website.
The newsletter is sent out to the e-mail mailing list of over 7,500 subscribers and the conference publications were distributed to the participants of the Annual Conference in Berlin, Germany.
The following experts reviewed the two key reports that were published by Alzheimer Europe in the context of the Operating Grant.
• Dr Christian Borg Xuereb, University of Malta.
• Prof. Rabih Chattat, University of Bologna, Italy.
• Dr Jan Lužný, Psychiatric Hospital in Krommeriz, Czech Republic.
• Dr Isabelle Tournier, University of Luxembourg.
• Prof. Pavel Weber, Faculty Hospital and Masaryk University, Czech Republic.
• Ms Kristina Westerlund, Alzheimer Sverige, Lund, Sweden
• Ms Rosário Zincke dos Reis, Advocados, Lisbon, Portugal
In addition, Alzheimer Europe carried out a quantitative evaluation of its Annual Conference and its Alzheimer’s Association Academy via an online survey (surveymonkey).
These evaluations were included in Deliverable D6.4. which was a separate deliverable included in the operating grant agreement and was uploaded in the participant portal.