Annual Report 2005
I am pleased to report that my second year as Chairperson of Alzheimer Europe was another year of growth and expansion for the organisation.
As in the previous year, the business plan constituted a main focus for Alzheimer Europe and we were able to progress considerably on its four main programmes.
The survey of our member organisations, concerning the diagnosis of people with dementia and the importance of referring them to Alzheimer associations at the time of diagnosis was completed in 2005 and published together with our 2004 annual report.
Our programme on the autonomy of people with dementia and the importance of advance directives was concluded when our member organisations overwhelmingly endorsed the position paper on advance directives at our Annual General Meeting in Killarney. I consider this to be a great success that despite the cultural and legal differences between our European countries, we were able to come together as Alzheimer associations and reach consensus on a difficult issue. I can only congratulate Dianne Gove as the project manager, Alan Jacques as the chairperson of our working group and the other members of the working group (Peter Ashley, Holger Baumgartner, Dorthe Buss, Elaine Gadd, Nicole Kerschen, Anna Mäki-Petäjä and Anna Rovira) who made this difficult task seem effortless. I am sure the report and position which resulted from their work will prove a useful lobbying tool for both Alzheimer Europe and its member organisations for years to come.
Similarly, the guide for the time after diagnosis developed in the framework of our third business plan programme is a thoughtful document that answers the main questions that people with dementia and their carers will have when receiving the difficult diagnosis of Alzheimer’s disease or another form of dementia. Again, Dianne Gove and the working group (Patrice Allard, Antonia Croy, Pierluigi de Bastiani, Sabine Jansen, Mireille Elsen, Alicja Sadowska and Micheline Selmes) managed to deliver a useful document and combined the information needs of both people with dementia and their carers, making this one of the first manuals that does so. I can only hope that member organisations will be able to translate and publish it in a number of languages and add to the growing list of Alzheimer Europe publications in direct use by tens of thousands of Europeans.
I am also encouraged by the fact that the communication strategy which we adopted in 2004 is now bearing fruit. Our quarterly newsletter provides a wealth of information on our various activities, as well as scientific breakthroughs and European developments. The visitors to our website have more than doubled, a positive trend which has continued in this year. In 2005, close to a quarter of a million people consulted our website to find much needed information on the care and treatment of Alzheimer’s disease and other forms of dementia, a number I am justly proud of.
Alzheimer Europe has also become an established and trusted organisation in European circles. Clear evidence for this is that our organisation has been called upon by the European Commission to become a full member of a number of its advisory working groups, such as those on major and chronic diseases and on morbidity and mortality. Similarly, the involvement of Alzheimer Europe in the revision process of the diagnostic and management guidelines of the European Federation of Neurological Societies shows the importance that professional and medical organisations give to user and association input in general and to Alzheimer Europe in particular. Also, the nomination of Jean Georges, the Executive Director of our organisation to represent the wider patient community at the Management Board of the European Medicines Agency is undoubtedly another sign of the growing recognition of our organisation.
We were not only able to develop closer ties with the European Commission and the European Medicines Agency, but we also brought together a number of important and renowned European organisations and networks (Cochrane Collaboration, European Alzheimer’s Disease Consortium, European Association of Geriatric Psychiatry, European Federation of Neurological Societies, International Association of Gerontology – European region, the Interdem and North Sea Dementia Research networks) to explore a closer collaboration in the future.
The success of this meeting and the interest of the participating organisations in this sort of closer collaboration led us to submit a project proposal to the European Commission entitled “European Collaboration on Dementia” and I am absolutely delighted that our bid was one of the 55 projects which the Commission decided to fund out of a total of 242 submitted project proposals. That Alzheimer Europe can be successful in such a competitive environment clearly shows the quality of our work and our plans for the future.
I am therefore confident that Alzheimer Europe will continue to grow from strength to strength and I would like to thank our small, but highly dedicated team consisting of Executive Director, Jean Georges, Information Officer, Dianne Gove and Communication Officer, Sandrine Lavallé for making this possible.
Finally, our heartfelt thanks also go to Janssen-Cilag, Lundbeck and Pfizer which continued to support our different activities.
In 2005, Alzheimer Europe:
- Organised a meeting bringing together representatives of pan-European organisations of professional or scientists to explore a closer collaboration between organisations active in the field of dementia,
- Was informed by the European Commission of the success of its project application “European Collaboration on Dementia” which aims to develop a European network to jointly develop consensual indicators and in particular
- Consensual prevalence rates,
- Guidelines on diagnosis and treatment,
- Guidelines on psycho-social interventions,
- A report on risk factors and risk reduction and prevention strategies,
- A report on the socio-economic costs of dementia in Europe and
- An Inventory of social support systems in the European Union,
- Formalised its relationship with Alzheimer’s Disease International through the adoption of a partnership agreement between the two organisations,
- Continued its collaboration as an active member of the European Patients’ Forum,
- Collaborated in the Task Force of the European Federation of Neurological Societies for the revision of the organisation’s guidelines on the “Diagnosis and management of Alzheimer’s disease and other forms of dementia”
- Continued its involvement with the European Alzheimer’s Disease Consortium and hosted and updated the website of this research network,
- Participated in a high-level round-table organised by the European Federation of Pharmaceutical Industries and Associations on the future of medicines research in Europe,
- Doubled the number of visitors to its website,
- Organised a successful annual conference in Killarney, Ireland, bringing together some 400 delegates from more than 30 different countries,
- Developed a consensual position on anti-dementia drugs in response to the preliminary recommendations of the National Institute of Clinical Excellence which was backed by over 100 European organisations and individual researchers,
- Participated in the conference of the Luxembourg Presidency of the European Union on long-term care,
- Was appointed as a full member to the Task Force on Major and Chronic Diseases and the Working Party on Morbidity and Mortality of the European Commission,
- Saw its Executive Director nominated by the European Parliament and Council of Ministers as one of two patient representatives on the Management Board of the European Medicines Agency,
- Continued its involvement in the working group with patient organisations of the European Medicines Agency,
- Participated in the quarterly meetings of the NGOs affiliated to the Council of Europe and presented its position on advance directives at the 8th European Conference of National Ethics Committees,
- Published the results of its survey of Alzheimer associations,
- Adopted a position on advance directives in which the organisation urges governments to provide a clear statutory basis for effective advance directives,
- Produced a guide for carers and people with dementia to address issues of concern in the time following diagnosis,
- Worked on an information organiser to support Alzheimer associations for the support and counselling of people with dementia and their carers,
- Carried out an extensive literature search on home care and produced national reports on the provision of home care for a number of European countries,
- Partnered with Lundbeck to carry out a survey of carers’ experiences and needs in France, Germany, Poland, Scotland and Spain, • Published new versions of its French and German Care Manuals and its French children’s book,
- Developed a new strategic plan for the organisation focused on improving the access by people with dementia carers to treatment options and care services.
Our core objectives
As set out in its business plan, Alzheimer Europe is an interface between national member organisations and European structures in order to represent the interests of people with dementia and their carers, to promote information exchange and to develop policy.
In 2005, Alzheimer Europe continued its networking with a number of European institutions, agencies and organisations in order to ensure that the views of people with dementia and their carers were adequately represented.
European Collaboration on Dementia
To strengthen its strategic partnerships, Alzheimer Europe organised a meeting on 8 April 2005 with representatives of a number of pan-European organisations of professionals or scientists active in the field of dementia in order to explore ways of collaborating more closely together in the future.
At the meeting, representatives of Alzheimer’s Disease International, the Cochrane Collaboration, the European Alzheimer’s Disease Consortium, the European Association of Geriatric Psychiatry, the European Federation of Neurological Societies, the International Association of Gerontology – European region and the Interdem network took part and welcomed the prospects of a closer collaboration between the different groups. Furthermore, the group agreed to jointly submit a project to the European Commission under its Public Health Programme.
On 30 August 2005, the European Commission informed Alzheimer Europe that the Commission services had decided to accept the organisation’s project application EuroCoDe - European Collaboration on Dementia for co-financing. The aim of the project is to develop a European network of all the players active in the field of dementia to jointly develop consensual indicators and to develop an ongoing dialogue between these actors to identify ways of developing synergies and a closer collaboration on a European level.
More specifically, the project will develop:
- Consensual Prevalence rates The project will gather existing epidemiological studies and analyse the respective merits and shortcomings of the individual studies. Based on the report on these studies, consensual European prevalence rates will be developed that will be acceptable to all partners and used as a “golden standard” within the respective organisations. Particular attention will be paid to providing a breakdown between various forms of dementia (Alzheimer’s disease, vascular dementia, Lewy-body dementia, fronto-temporal dementias and other rarer forms of dementia), as well as between the different stages of the disease (mild, moderate and severe stages).
- Guidelines on diagnosis and treatment The aim of the project is to identify existing guidelines and establish a comparative report on the similarities and differences between them. This report will then be used to develop consensual guidelines acceptable to the various network and project partners.
- Guidelines on non-pharmacological interventions The project will identify studies on the effects and usefulness of various interventions and present them in a comparative report highlighting the strengths and weaknesses of the respective studies and the interventions studied. Based on the findings, the project will aim to elaborate consensual guidelines on non-pharmacological interventions.
- Risk factors and risk reduction and prevention strategies As part of the project, existing studies on risk factors for Alzheimer's disease and other forms of dementia will be collected and presented in a comparative report highlighting promising venues for the development of prevention strategies. Particular attention will be given to developing recommendations for national Alzheimer associations to use in conjunction with campaigns promoting a “healthy brain lifestyle”.
- Socio-economic cost of Alzheimer’s disease The project will aim to collect existing studies. Since European healthcare systems are very different, it would be impossible to produce overall European data and the project will present its findings in a comparative report and aim to elaborate recommendations for the methodology of future socio-economic studies in the field.
- Inventory of social support systems The project partners will carry out a survey on the existing level of support available for people with dementia and their carers in the 25 Member States of the European Union and the accession countries. Such a survey will look at the different treatment reimbursement systems, the level of carers allowances and benefits, care insurance systems, employment related benefits (such as carers’ leave, flexible working time, pension systems) and other benefits. The findings will be presented in a comparative report and discussed with the other network and project partners in order to identify best practices.
Alzheimer’s Disease International
Alzheimer Europe continued its discussions with Alzheimer’s Disease International in order to strengthen the collaboration between the two organisations. The partnership agreement drawn up in 2004 was approved by the Boards of both associations in 2005 and will provide a framework for an improved collaboration and exchange of information. Also, representatives of the Alzheimer Europe Board attended the Annual Conference “Bridge at the Crossroads” which Alzheimer’s Disease International organised together with its Turkish member in Istanbul from 28 September to 1 October 2006.
European Patients’ Forum
Alzheimer Europe also continued its collaboration with the European Patients’ Forum (EPF), an umbrella organisation of pan-European patient organisations which Alzheimer Europe helped to co-found in 2003. Jean Georges, the Executive Director of Alzheimer Europe participated in the various meetings of the EPF Executive of which he has been a member since the beginning of the organisation. The Executive developed a clear business plan for the organisation, as well as a code of conduct for its collaborations with the pharmaceutical industry. In collaboration with Pfizer Europe and the European Federation of Pharmaceutical Industries and Associations (EFPIA), EPF organised two successful conferences focused on European policy developments and capacity building for patient organisations (: “Driving better health – The value of health education and compliance” on 22 and 23 June 2005 and “Strengthening Patient Groups in the EU: Exchange of Best Practice Between Patient Groups” on 10 and 11 October 2005). Both events were attended by representatives of various member organisations of Alzheimer Europe.
European Federation of Neurological Societies
Apart from the contacts established in the framework of its “European Collaboration on Dementia” project, Alzheimer Europe further intensified its collaboration with the European Federation of Neurological Societies. Thus, Alzheimer Europe was represented with a stand at the Annual EFNS Conference in Athens (17-20 September 2005) and Jean Georges, its Executive Director, took part in a symposium organised by Lundbeck (“Alzheimer’s disease: Treatment benefits of memantine with a different focus”) at which he presented various findings from different surveys with regard to inequalities of access of people with dementia and their carers to treatment options and care services. Also, Jean Georges continued his involvement in the EFNS Task Force for the revision of the organisation’s guidelines on the “Diagnosis and management of Alzheimer’s disease and other forms of dementia”. In line with the EFNS policy for the development of such guidelines, Alzheimer Europe was specifically asked to represent the views of people with dementia and their carers on this panel which was chaired by Gunhild Waldemar (Denmark) with contributions from Bruno Dubois (France), Murat Emre (Turkey), Philip Scheltens (Netherlands), Peter Tariska (Hungary) and Martin Rossor (United Kingdom). A draft of the guidelines was presented at the Lisbon conference and the publication of the final document is scheduled for 2006.
European Alzheimer’s Disease Consortium
As in previous years, Alzheimer Europe continued its involvement with the European Alzheimer’s Disease Consortium (EADC) alongside a number of highly respected research centres active in the dementia field. In particular, Alzheimer Europe hosted and updated the website of the network and was involved in two EADC projects to represent the views of people with dementia and their carers:
- ICTUS: The impact of treatment with anticholinesterase inhibitors on Europeans with Alzheimer’s disease, which is a prospective two year observational study which coordinates the centralisation of patient data available within the study’s individual centres. Its primary objective is to determine whether treatment changes the pattern of institutionalisation.
- DESCRIPA: Development of screening guidelines and diagnostic criteria for pre-dementia Alzheimer’s disease. The primary goal of the project is to reach an evidence-based European consensus on the identification of subjects with Alzheimer’s disease in the pre-dementia stage.
European Federation of Pharmaceutical Industries and Associations
On 1 June 2005, the European Federation of Pharmaceutical Industries and Associations organised a round-table discussion on the subject “Medicines Research – Driving Europe’s Health”. The forum brought together representatives of the European Institutions (Günther Verheugen, Commission Vice-President and Dagmar Roth-Behrendt, Vice-President of the European Parliament), the regulatory authorities (Thomas Lönngren, CEO of the European Medicines Agency), the pharmaceutical industry (Franz Humer, CEO of Roche and Tom McKillop, CEO of AstraZeneca) and patient organisations (Jean Georges, Executive Director of Alzheimer Europe).
After listening to the Commission priorities with regard to the new regulatory framework for the pharmaceutical industry, patient safety and patient involvement, the different participants highlighted a number of concerns and preoccupations. As a patient representative, Jean Georges stressed the importance of involving patient organisations in all relevant policy discussions such as patient safety, but also more controversial issues such as stem cell or animal research. In order for these organisations to have a more active role, he called on the European institutions to consider providing core-funding to relevant European organisations such as the European Patients’ Forum.
He also questioned the economic assessments of the cost of diseases of most Member States of the European Union, which seem to focus on narrow cost-effectiveness models of existing treatment options without taking due consideration of the quality of life of patients or the global cost of diseases to society as a whole. As in previous years, Alzheimer Europe actively participated in the quarterly meetings of the EFPIA think tank which brings together representatives of European patient organisations and the pharmaceutical industry to discuss European issues of interest to both stakeholders.
In 2005, Alzheimer Europe continued with the implementation of the communication strategy which the organisation had adopted in 2004. Its quarterly e-mail newsletter, the website and the annual conference remained the key tools for the association in this area.
Alzheimer Europe Website
The Alzheimer Europe website continues to be a useful source of information for people interested in finding out more about Alzheimer Europe and the care and treatment of people with dementia. Between 2004 and 2005, the number of visitors doubled with close to 20,000 persons visiting the Alzheimer Europe website every month.
Alzheimer Europe regularly updated its website with information on its latest activities, the projects of its member organisations, research findings and the latest European developments.
14th Annual Conference in Killarney, Ireland
‘People with dementia have the right to self determination and must be allowed to play a more pivotal role in determining policy and practice in dementia care’ was the main message from the 15th Alzheimer Europe Conference which was hosted by the Alzheimer Society of Ireland in the Great Southern Hotel, Killarney from 9-12 June 2005. The 3 day conference, entitled ‘Dementia Matters’, highlighted key issues within the world of dementia in a stimulating and challenging way. Speaking at the opening ceremony Dr Niall Tierney, Chairperson of the Alzheimer Society of Ireland, said: “We are on the cusp of something new, with the opportunity to embrace a different perspective on dementia and the provision of dementia care. People with dementia have the right to play a more pivotal role in how we as policy makers, healthcare providers, advocates, carers and members of society plan and develop responses in dementia care and we are delighted to have several people living with dementia addressing us during this conference and giving us their perspective.”
The Alzheimer Europe conference brought together approximately 400 delegates from more than 30 countries worldwide and focused on the issues of promoting a rights-based approach to dementia care, the person-centred philosophy in dementia care, and the challenges that lie ahead and how they should be addressed.
In 2005, Alzheimer Europe continued to develop its policy making strategy. For that purpose, the association organised a meeting in Brussels on 24 February 2006 bringing together representatives of its member organisations involved in government affairs, campaigning or lobbying. Representatives of the Belgian, English, Finnish, French, German, Irish and Scottish member organisations discussed ways on how to improve the information flow between Alzheimer Europe and its member organisations and how to speed up the development of policies and positions in response to European developments.
Position on anti-dementia drugs
On 22 March 2005, Alzheimer Europe responded to the preliminary NICE recommendations on the prescription of anti-dementia drugs in which it strongly disagreed with the recommendations which would disbar tens of thousands of people from the only available treatment for their condition. This position was approved unanimously by the 20 national member associations which responded to the organisation’s consultation and received the endorsements of other respected European organisations, such as the European Brain Council and the European Union Geriatric Medicine Society, as well as a high number of renowned dementia experts from all over Europe.
Carers and scientists alike were deeply concerned about the review proposed by NICE and demanded continued access for people with Alzheimer’s disease to existing drugs, since:
- Enough clinical evidence exists to support the use of anti-dementia drugs and clinical trials have shown them to be effective not only in improving memory, but also for beneficial effects on behaviour and activities of daily living.
- This clinical data on the effectiveness of anti-dementia drugs is supported by testimonies of great numbers of people with dementia and their carers.
- Cost-effectiveness models used by the National Institute of Clinical Excellence fail to duly take into account effects on quality of life of carers of people with Alzheimer’s disease.
- The existence of anti-dementia drugs has contributed to the development of dementia care through an expansion of memory clinics and other specialised services offering early diagnosis, advice and support for people with dementia and their carers.
- The discontinued prescription of anti-dementia drugs would take away one of the main reasons for people coming forward for an early diagnosis of their condition who would therefore no longer benefit from other significant advantages of an early diagnosis.
- The NICE recommendations would discriminate against a significant proportion of the population who already suffers from stigma and ageist prejudices.
- European citizens should have equal rights to protection and access to health care regardless of their country of residence. The NICE recommendations would disbar British people with Alzheimer’s disease from access to treatment options available and reimbursed in other Member States of the European Union.
Presidency of the European Union
The Luxembourg Presidency of the European Union organised a conference on long-term care in Luxembourg from 12 to 13 May 2005 which was attended by national representatives from social and health ministries. At the meeting, a report by Ms Nicole Kerschen, former advisor of the Alzheimer Europe Lawnet project, and her colleagues, was presented and discussed. This report highlighted the needs of dependant people, including those of people with dementia and presented an overview of the different national systems for the responsibility of the state and the individual in the countries covered.
Sabine Henry, Vice-Chairperson of Alzheimer Europe, took part in a round table discussion on the needs of patients and disabled people and provided an overview of the prevalence of dementia in Europe with the Alzheimer Europe estimates of the numbers of people with dementia in the Member States of the European Union. She also presented some key findings of the Alzheimer Europe EPOCH project (Equality in the provision of care at home) on the status of carers in a number of European countries. The conference sent a strong signal to the Commission and the Council of Ministers about the importance of including the question of long-term care into the open method of coordination in order to compare the different systems and to provide examples of best practice in this important field.
Alzheimer Europe continued to develop its working relations with the European Commission. Thanks to the success of its project application “European Collaboration on Dementia”, Alzheimer Europe was invited to participate as a full member in the Task Force of the European Commission on Major and Chronic Diseases, as well as the Working Party on Morbidity and Mortality.
These working groups met on 12 and 13 December 2005 and discussed the Commission work plan for 2006, as well as health information developments in oral health, in autistic spectrum disorders, in musculoskeletal diseases and also in neurological and non-psychiatric brain diseases.
Also, the European Commission published the Alzheimer Europe report on rare forms of dementia in 2005. This project which was completed in 2004 and resulted in a detailed report with information on over 30 rare forms of dementia which included a description of the disorder along with its symptoms and causes, the epidemiological data available and treatment, information on clinical trials and diagnostic procedures and finally a list of sources of further information.
European Medicines Evaluations Agency
2005 also constituted a highlight of the organisation’s collaboration with the European Medicines Agency (EMEA). Thus, Jean Georges, the Executive Director of Alzheimer Europe, was appointed as one of the two patient representatives on the EMEA Management Board by the Council of Ministers of the European Union at its meeting of 29 July 2005. As in previous years, Alzheimer Europe also participated in the quarterly meetings of the EMEA working group with patient organisation which addressed patient-specific issues within the European regulatory system, such as:
- Pharmacovigilance and reporting of adverse drug reactions,
- Accessibility and readability of patient information leaflets,
- Transparency and dissemination of information on prescription medicines to patients.
The working group recommendations for the criteria that patient organisations need to fulfil in order to become involved in EMEA activities were adopted by the EMEA Management Board in 2005.
Council of Europe
Besides the institutions of the European Union, Alzheimer Europe also continued its collaboration with the Council of Europe. As an organisation with consultative status, Alzheimer Europe took part in the quarterly meetings of NGOs affiliated to the Council of Europe and participated in the meetings of organisations with an interest in health. From 25 to 26 April, Jean Georges also participated in the 8th European conference of national ethics committees in Dubrovnik, Croatia at which he presented the work that the Alzheimer Europe working group on advance directives had developed.
Approximately 100 participants from 42 countries took part in this 8th European Conference of National Ethics Committees (COMETH). The main themes of the conference were the ethical implications of an ageing society and the Convention on Human Rights and Biomedicine.
Business plan programmes
Apart from clearly setting out the core objectives of Alzheimer Europe, the business plan also provides a number of priority programmes which the association should collaborate on with its national member organisations, as well as with other interested third parties.
BP 1 – Alzheimer associations
Alzheimer Europe had carried out an extensive survey of its member organisations to highlight the great number of services provided by Alzheimer associations. These results were collected in a report on the Alzheimer movement in Europe which was published in 2005 together with the 2004 Annual Report.
The results of the survey were also presented at a number of conferences of medical professionals such as the Conference of the European Federation of Neurological Societies in Athens (18-21 September 2005) or a symposium on “Communicating Treatment Benefits” organised by Pfizer in Rome (11 November 2005). Similarly, the importance of Alzheimer associations was discussed with specialists in the framework of the EFNS task force for the review of their guidelines on the diagnosis and management of dementia. Finally, a survey conducted in a number of European countries in collaboration with Lundbeck aimed at identifying the degree of satisfaction of diagnosed persons with the diagnostic process and the information provided by specialists.
BP 2 – Advance directives
The second business plan objective was the promotion of the autonomy of people with dementia through the recognition of advance directives.
An extensive literature search on the subject of advance directives had been carried out by Dianne Gove thanks to additional financial support from the Fondation Médéric Alzheimer. In her work, she was supported by a working group chaired by Alan Jacques (United Kingdom) and consisting of Peter Ashley (United Kingdom), Holger Baumgartner (Austria), Dorthe Buss (Denmark), Elaine Gadd (United Kingdom), Nicole Kerschen (Luxembourg), Anna Mäki-Petäjä (Finland) and Anna Rovira (Spain). In 2005, the working group finalised a position paper on advance directives which was adopted at the Annual General Meeting of Alzheimer Europe with only two abstentions. In its position paper, the organisation made the following main points:
- Alzheimer Europe would like to promote the use of advance directives for decisions covering a wide range of health related issues e.g. treatment, care, welfare, research, the appointment of health care proxies etc.
- Alzheimer Europe supports the concept of health care proxies and encourages governments to legally recognise their role and also to develop the relevant safeguards for their involvement in the decision-making process.
- Alzheimer Europe would like to emphasise the importance of involving doctors and other qualified health care professionals when considering whether/how to draw up an advance directive within the context of advance care planning.
- Due to difficulties in obtaining an appropriate level of precision (which is neither too vague nor too specific to be of practical use), Alzheimer Europe encourages people to write statements of values.
- Alzheimer Europe expects governments to set up appropriate systems for the registration, use and review of advance directives.
- Alzheimer Europe is of the opinion that for an advance directive to be valid, certain generally accepted criteria should be fulfilled e.g. that the person has the necessary and relevant capacity, is free from undue pressure, has not made a more recent version and has stated wishes that are applicable to the current situation/proposed treatment.
- With regard to debates surrounding the issue of current versus formerly expressed wishes, Alzheimer Europe insists on the importance of always trying to ascertain the wishes of patients even if they have written an advance directive. If the person is fully competent, doctors should not follow instructions/wishes expressed in the advance directive. If the person is not fully competent and there appears to be a conflict between current and former wishes, the person’s current wishes and feelings should be considered alongside those expressed in the advance directive as they represent the person’s current mental and emotional state and attitudes.
- Decisions not to comply with valid advance directives should be documented in the patients’ medical files and an explanation should be given to significant others, relevant supervisory bodies and health care proxies.
- In order to guarantee equity in the provision of health care and to ensure that people have a real choice, Alzheimer Europe emphasises the need to increase the availability and improve the quality of palliative care services/facilities.
- Alzheimer Europe urges governments to provide a clear statutory basis for effective advance directives with appropriate safeguards and a framework of procedures to ensure their effectiveness.
- A growing number of its members consider that governments should legally recognise advance directives and make refusals of treatment expressed in advance directives legally binding albeit with adequate safeguards.
BP 3 – Counselling and support
The third business plan programme focuses on improving the support and counselling of carers of people with dementia at the onset of the disease.
With the support of a working group consisting of Patrice Allard (France), Antonia Croy (Austria) Pierluigi de Bastiani (Italy), Sabine Jansen (Germany), Mireille Elsen (Luxembourg), Alicja Sadowska (Poland) and Micheline Selmes (Spain), Dianne Gove produced a manual for informal carers and people with dementia which responds to their specific needs in the period of time following a diagnosis. Member organisations, as well as people with dementia, were consulted on various drafts to ensure that the language used was appropriate and met their expectations. A final draft was approved by the Board of Alzheimer Europe in its meeting of 8 and 9 October 2005. The translation and dissemination of the manual will be done in 2006.
In 2005, the above-mentioned working group also started work on the development of a guide for Alzheimer Associations. This will take the form of an information organiser covering the main issues that staff in the associations may be asked about by informal carers and people with dementia. It will contain general information about the various topics and guidelines on the kind of support that could be provided. Associations will be expected to add their own information and/or references indicating where such information is located, as well as relevant contact details. The guide is intended to be used as a loose-leaf file in order to ensure that it can be easily updated and adapted to the needs of each organisation.
BP 4 – Care at home
With its fourth business plan programme, Alzheimer Europe aims at promoting quality of care at home. As with the other programmes, a working group with representatives of national organisations was set up to advise Alzheimer Europe on the work it carries out in this field. The group is comprised of Sirkkaliissa Heimonen (Finland), Sabine Henry (Belgium), Non Cobban (United Kingdom), Majken Ploby (Sweden) and Eugen Stefanut (Romania).
In 2005, an extensive literature search was carried out on home care provisions and Dianne Gove produced a series of national reports describing the provision of home care and the legal framework for home care for a series of European countries. These reports will be finalised in 2006 together with an overall report outlining the results of the literature search.
European Carers’ Survey
In 2005, Alzheimer Europe partnered with Lundbeck to develop “The dementia carers’ survey” which aimed at identifying the challenges that Alzheimer’s disease presents to carers in the participating countries. These include coping with symptoms and care, as well as national differences with regard to diagnosis and the availability and access to treatment and care services. Member organisations of Alzheimer Europe in France, Germany, Poland, Scotland and Spain conducted this survey in November and December 2005 in their respective countries and each association was able to achieve or surpass the set minimum of 200 respondents.
The results of the survey will be analysed and presented in 2006.
Alzheimer Europe Publications
Alzheimer Europe was also able to continue with the dissemination of its previous Commission-financed projects. In 2005, Alzheimer Europe was thus able to produce a 2nd edition of the French version of its Children’s book and to thoroughly revise both the German and French versions of its Care Manual which were published in 2005 in their 2nd and 3rd editions, respectively.
New Strategic Plan
Conscious that the business plan of the organisation would come to an end in 2006, Alzheimer Europe started discussions on the implementation of a new strategic plan for the organisation.
After some discussion, the Alzheimer Europe Board decided to opt for a more general strategic plan that would be supplemented by more detailed annual work plans highlighting the priorities of the organisation for the year. The strategic plan, which will be submitted for ratification at the Annual General Meeting of the organisation in 2006, summarises Alzheimer Europe’s mission as consisting of changing perceptions, policy and practice in order to improve the access by people with dementia and their carers to treatment options and care services .
Furthermore, the strategic plan stresses that to achieve its mission and its objectives, Alzheimer Europe will represent the interests of people with dementia and their carers, involve and support its national member organisations, promote information exchange between national Alzheimer associations and other stakeholders, carry out transnational comparative surveys, develop policies and network with other relevant European organisations.
Last Updated: mardi 14 juillet 2009