EN    EN EN 
 
EN    EN  COMMISSION OF THE E UROPEAN COMMUNITIES 
Brussels, 22.7.2009 
SEC(2009) 1041 final 
  
COMMISSION STAFF WORKING DOCUMENT 
 
Accompanying the  
COMMUNICATION FROM THE CO MMISSION TO THE EUROPEAN 
PARLIAMENT AND TO THE COUNCIL  
 
on a European initiative on Alzh eimer's disease and other dementias 
  
Summary of the Impact Assessment  
{COM(2009) 380 final} 
{SEC(2009) 1040}
 
EN 2   EN 1. P ROBLEM DEFINITION  
Dementias are neurodegenerative diseases that have varying aetiologies. The most common 
forms of dementia in the European Union are Alzheimer’s disease (about 70% of cases), and vascular dementia (less than 30%)
1. 
There are currently over six million people with dementia in the European Union2 and it is 
predicted that this number will  double in the next 20 years3. The World Health Organisation 
2004 update report on the Global Burden of Disease estimates the total prevalence of Alzheimer’s disease and dementia in Europe at 7.3 million
4. 
1.1. Mental Capital and Well-Being, Diagnosis, and Early Intervention 
Although there is evidence that a healthy lifest yle can help prevent Alzheimer’s disease and 
dementia5, the possibility and importance of prevention  and early intervention  are not 
sufficiently known or acted on throughout the EU.  
Alzheimer's disease remains under-diagnosed in  the EU. Although impr oving diagnosis will 
mean that a greater proportion of  people with dementia benefit from health and social care, 
early diagnosis  can ensure that interventions take place when they are most effective, 
delaying the progression of the disease and offering the potential to minimise the total cost 
of care for individual patients. 
1.2. Research 
There is a lack of coordination of research , which is hampering potential for action at the 
European level. In part icular, there is also a lack of healthcare a nd social care research , 
where gaps in knowledge exist to explore the e fficacy of models of care for Alzheimer’s and 
dementia patients including the care of the frail and elderly. 
There is a lack of updated epidem iological information  on the prevalence and incidence of 
Alzheimer’s disease and dementias to help direct research and action and plan healthcare and social care provision in the future. Due to und er-diagnosis of Alzheime r’s disease in the EU, 
the magnitude of the problem is unclear becau se figures of prevalence are based only on 
diagnosed cases. 
1.3. Solidarity, Treatment, Care and Financing 
Although there are good practices emergi ng across the EU with regard to diagnosis, 
treatment, care, and financing  of responses to th ese conditions, these are not being shared 
sufficiently throughout the Union.  
Although early provision of support at home can decrease institutionalization by 22%
6, best 
practices in terms of early support are not being shared . More research will also be 
needed in this area also as to inform MS how  financial resources could be spend on health 
infrastructure through cohesion spending. 
                                                 
1 Alzheimer’s disease: Scientific, medical and so cietal implications, Synthesis and recommendations. 
Collective expert report from INSERM (French Nati onal Institute for health and medical research), 
2007. 
2 Alzheimer Europe (2006) Dementia in Europe Yearbook 2006. 
3 Ferri et al.  (2005) The Lancet 366: 2112-2117. 
4 http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf 
5 Alzheimer Europe (2008) Dementia in Europe Yearbook. 
6 Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) The Gerontologist  45:177-185. 
 
EN 3   EN For some aspects, like the expected workforce shortages  in the formal long- term care sector 
and the financing of social pr otection for people with neurod egenerative conditions and their 
families, there are needs not only to spread and develop good practices, but also to develop 
concepts and solutions on a macro level, both nationally and at European level.  
1.4. Rights, Autonomy and Dignity 
Articles 25, 26, and 35 of the Charter of Fundamental Righ ts of the European Union7 
(2000/C364/01) refer to the situa tion of patients suffering from Alzheimer's disease and other 
dementias. Furthermore, the United Nations Convention on the Rights of Persons with 
Disabilities8 protects the rights to non-d iscrimination and respect for dignity and autonomy of 
Alzheimer’s patients. 
Across Europe, there is no consensual view on ethical issues  surrounding vulnerable adults; 
discrimination is compounded by ageism, exclusi on, lack of recognition of  the mental capital 
of older people, stigma associated with dementia , and the complicated cross-border issue of 
the legal rights of mental guardians. 
2. A NALYSIS OF SUBSIDIARITY  
A Commission initiative in the fiel d of Alzheimer’s disease reflect s the need to respond to the 
priority attached to European action on this  issue by the Member States, as shown by the 
Council Conclusions9 adopted under the French Presidency on 16 December, 2008. 
Furthermore, the Written Declaration of the European Parliament10 (0080/2008) calls on the 
Commission, Council, and governments of the Memb er States to develop an action plan to 
tackle Alzheimer’s disease. 
Political leadership at the Eur opean level can play an important  role in awareness-raising and 
would encourage MS to set Alzheimer as a political priority, in particular in the context of an 
ageing society and the future costs it will incur. 
A DG RTD proposal for a Council Recommendation for Joint Programming of research in the 
field of neurodegenerative diseases, including Al zheimer’s disease, is planned for adoption at 
the same time; this timing provides us with a valuable opportunity to coordinate further EU-
level activities in this area. 
The EuroCoDe project has up provided accurate qua litative and quantitative data and analysis 
of the burden of Alzheimer’s di sease in the EU; however, the pr oject finished  July 2009, and 
there is now a need to evaluate what the op tions are for taking this work forward. Without 
further action, the progre ss achieved by the project could well be lost.  
3. O BJECTIVES  
3.1. Acting early to promote well-being in old age 
– Promoting good physical and mental health; 
– Identifying and promoting best  practice in early diagnosis; 
– Improving prevention, and early diagnosis and intervention. 
                                                 
7 http://eur-lex.europa.eu/LexUriServ/LexUri Serv.do?uri=OJ:C:2000:364:0001:0022:EN:PDF 
8 http://www.un.org/disabilities/docum ents/convention/c onvoptprot-e.pdf 
9 http://www.consilium.europa.eu/ueDocs/cms _Data/docs/pressData/en/lsa/104778.pdf 
10 http://www.europarl.europa.eu/sides/getDoc.d o?pubRef=-//EP//NONSG ML+WDECL+P6-DCL-2008-
0080+0+DOC+PDF+V0//EN&language=EN 
 
EN 4   EN 3.2. Better understanding of Alzheimer’s di sease and dementia through a shared 
European effort 
– Supporting targeted research on key problems at  European level; develop Alzheimer’s as a 
pilot of Joint Programming; 
– Developing further the current accurate  comparable epidemiological data; 
– Promoting the sharing and pooling of  knowledge and data at EU level; 
– Promoting research into social care models including sharing of be st practices in the 
training of dementia caregivers. 
3.3. Supporting national solidarity with regard to dementias 
– Mapping and describing better the existin g and emerging good pract ices related to 
treatment and care and improving the dissemination of such practices; 
– Developing quality frameworks for medical a nd social care servi ces for people with 
dementias; 
– Empowering national and international Alzheime r’s associations and relevant patients’ 
organisations. 
3.4. Respecting the rights of people with dementias 
– Recognising the mental capital of older a dults and reducing the stigma associated 
Alzheimer’s disease and other dementias; 
– Sharing best practice on respecting the right s of vulnerable adults and tackling patient 
abuse. 
4. P OLICY OPTIONS  
4.1. Baseline Option – No new EU action 
This option would only continue current actions  in the field of Alzheimer’s disease and 
dementia that are currently in progress. As th e EuroCoDe project has now finished, this work 
will now stop and will not be taken further ex cept through calls for proposal within the scope 
of the current Health Programme11. 
Current projects and proposals under the Framework Programme for research would continue. 
Moreover, actions in the individu al Member States would conti nue. However, in MS with no 
political commitment and awareness of the de mentia challenge will see little progress. 
4.2. Report taking forward the work of the EuroCoDe project 
The Commission will continue to  support the development and pub lication of the Dementia in 
Europe Yearbooks, published by Alzheimer Eur ope. A new project or operational grant 
funded through the Health Programme would suppor t this initiative in taking forward the 
work of the completed EuroCoDe project. 
Policy actions under this option would be limited to continued collection of consensual and 
comparable prevalence rates for dementia in Eur ope, and participation in international fora to 
disseminate the data. 
                                                 
11 http://ec.europa.eu/health/ph_programme/pgm2008_2013_en.htm 
 
EN 5   EN 4.3. Commission Communication 
A Commission Communication would be a formal statement of the Commission's support to 
Member States in areas of public  health, social protection, resear ch, and legal rights in order 
to ensure coherent overall actions. A Communicati on would be adopted jointly with a 
proposal from the Directorate-General for Re search for a Council Recommendation for Joint 
Programming of research in the field neurod egenerative disease, including Alzheimer’s 
disease and dementia.  
Further actions would be supported within the scope of currently av ailable programmes and 
resources, in particular through the current Health Programme and the Framework Programme for Research and Technological De velopment. Cooperative actions between 
several Member States could be  achieved through voluntary part icipation in a Joint Action 
financed under the Health Programme.  
4.4. Formal Programme and European action plan 
The establishment of a European action pl an would be supported by a specific new 
programme with additional f unding beyond existing allocations. This would provide a single 
detailed and funded strategy for Alzheimer's dis ease and other dementias at Community level, 
and would develop specific projects on Alzheime r's disease and other dementias in a similar 
way to the previous specific initiative on Alzh eimer's disease and other dementias used during 
the period 1996-1998. The establishment of the formal programme woul d enable a greater 
degree of funding to be availabl e to achieve the objectives in a more comprehensive manner. 
5. A
NALYSIS OF IMPACT  
It has been considered that any initiative th at improves the situation for Alzheimer’s and 
dementia patients will bring social benefits, su ch as improving equity of access, support their 
dignity, and help combat stig matisation. Furthermore, a ny initiative that promotes 
coordination and supports more efficient use of resources will bri ng economic benefits. 
Quantitative information given here is therefor e limited to the current economic and social 
burden of dementia, costs of action plans at nati onal level, expected dementia trends in the 
future, and finally evidence from policy interventions at national level. 
Environmental impact is negligible and will not be considered further. 
5.1. Baseline Option – No new EU action 
The socioeconomic burden of Alzheimer diseas e, the major contributor to dementia, is 
growing rapidly in Europe due to increasing lifespan and a decreasing ratio of working to 
retired populations. As already highlighted, th e total direct and informal care costs of 
Alzheimer’s disease and other demen tias in 2005 were €130bn for EU27 (€21 000 per 
patient); 56% of cost s were informal care12. 
As a result of inaction, there will be no immedi ate burden on public aut horities at different 
levels of government, nor any additional funding  requirements at EU-level. However, in the 
longer term, costs in public he althcare provision on long-term care in the Member States will 
increase with the increasing burden of an agei ng society, without the benefit of coordinated 
sharing of experience and be st practice across the EU. 
                                                 
12 Alzheimer Europe (2008) Dementia in Europe Yearbook 2008. 
 
EN 6   EN 5.2. Report taking forward the work of the EuroCoDe project 
A report would highlight the relevant issues re garding Alzheimer's disease at European level 
and achieve thorough and up-to-date knowledge on the magnitude, prevalence, and incidence 
of the disease. Without the political support of  the Commission, it is unlikely that Alzheimer’s 
disease and dementia would be a priority. 
The budgetary cost of analysis and repor ting would be covered through EU funding, 
possibility through the establishm ent of a similar action to the completed EuroCoDe project. 
The previous EuroCoDe project cost €1 423 190 (with €843 000 funded by the Commission through the Health Programme). 
5.3. Communication 
A Communication would ensure that  the process would have the involvement of all relevant 
stakeholders, recognizing the relevant issues re garding Alzheimer's diseas e at European level. 
Thorough knowledge on the magnitude, prevalence,  and incidence of the disease would be 
achieved. This would provide a solid basis fo r planning prevention, early intervention and 
health and social care provision. Such an acti on could contribute to reducing the inequity gap 
of healthcare service provision and best practice in primary prevention. 
The technical work involved, coordinated notabl y through the relevant st rands of the Mental 
Health Pact, would be subsidized by the EU through support from the existing Health 
Programme and Framework Programme for Res earch and Technological Development. By 
centralising efforts, this will be more effi cient and less burdensome for national health 
systems and public authorities. 
There may well be some direct cost and ad ministrative burden for public authorities at 
different levels of government in the s hort term as they attempt to implement 
recommendations resulting from associated pr ojects of the initiative , and through voluntary 
participation in joint actions. 
A Communication would stimulate research and development. 
5.4. Formal Programme and European Action Plan 
An action plan would have many of the impacts already highlighted under the 
Communication option. There are also additional impacts that need to be considered. 
A stand-alone initiative and Alzh eimer’s Plan would undermine th e EU approach of focussing 
primarily on the causes of ill health, rather than attempting to have disease-specific strategies. 
A substantial level of funding above the status quo  might be required from EU, and a new 
budget line might need to be established. 
6. C
OMPARING THE OPTIONS  
Option EU 
Contribution 
& Efficiency Scope 
& Effectiveness Political 
Acceptance & 
Coherence Proportionality & 
Member State 
Commitment 
Baseline There would be no further contribution or 
coordination from the EU in the field of Alzheimer’s disease and dementia other 
than current action already underway. 
This would not require any additional funding, however would be very in 
effective an maintain current This option does 
not meet the expectations of 
the Member 
States as expressed 
through the Although there would 
be no additional commitment required 
of the MS, this option 
would not contribute to tackling any of the 
problems no achieve 
 
EN 7   EN inefficiencies. Council or the 
Parliament at all. any of the objectives 
outlined in this impact 
assessment. 
Report A report would provide up-to-date 
EU-level 
comparable data on the prevalence 
and incidence of 
Alzheimer’s disease and 
dementia. MS 
action alone could provide this 
information, 
however without guaranteeing 
comparability. This option requires 
support through 
funding of another 
project similar to the successful 
EuroCoDe project. 
Funding would be achieved through 
the current Health 
Programme. Other Framework 
Programme and MS 
actions would continue. This option 
would not meet 
the expectations 
outlined in the Council 
Conclusions or 
the Written Declaration of the 
Parliament, 
which calls for a more 
comprehensive 
approach in the field of AD and 
dementia. There would be no 
formal commitment 
necessary from the MS 
as this option would be entirely funded through 
the Health Programme. 
However, this option is not pass the 
proportionality test, as 
it would not be sufficient to meet the 
objectives outlined. 
Communication A Communication 
would support 
coordinated efforts 
across the EU in areas such as 
sharing of best 
practice and research. This 
would increase 
efficiencies and provide the 
political support 
for a more coherent approach 
to AD. This option 
includes a joint 
adoption of a 
proposal for a Council 
Recommendation 
on Joint Programming of 
research in the field 
of AD. Cooperative actions in the MS 
could be supported 
through a Joint Action funded 
through the Health 
Programme. This option 
would essentially 
meet the four key 
objectives outlined in the 
Council 
Conclusions as well as clearly 
establishing 
Alzheimer’s disease and 
dementia as a 
political priority. The actions would be 
legally non-binding and 
any Joint Programming 
or Joint Action would involve voluntary 
participation of the MS. 
This action would also be proportionate to the 
objectives described in 
Section Error! 
Reference source not 
found. . 
Action Plan An action plan would achieve the same 
EU-level objectives as a Communication 
whilst providing a single detailed and 
funded strategy. As additional 
funding beyond 
existing 
allocations would be required, this 
would make this 
option less 
feasible within 
the current financial 
perspectives, and 
would take longer to put in place. 
However, it 
would clearly meet the 
expectations of 
the Parliament and Council. Given the differences in 
organisation and 
delivery of health 
services and medical care throughout the EU, 
this option would raise 
subsidiarity issues. As 
the objectives in 
Section Error! 
Reference source not 
found.  could be 
substantially met through a less formally 
binding initiative, it 
would need to be clear that the additional cost 
and harmonisation 
involved in this option was proportionate to 
the additional benefits. 
 
 
EN 8   EN Based on this assessment, the preferred option is to bring forward proposals for a Community 
strategy for Alzheimer’s disease set out in a Commission Communication . A Commission 
Communication would be we proportionate to  the objectives without overstepping the 
principles of subsidiarity. 
7. M ONITORING AND EVALUATION  
This initiative does not require the collection of ne w statistical data, but it rather addresses the 
problem of incompatible and incomplete so urces of data, and focuses on developing a 
methodology on how to use existing data in a coherent manner. A data set for core progress 
indicators for the key objectiv es will be established based on the ongoing works of the 
initiative.