Commission staff working document accompanying the Communication from the Commission to the European Parliament and to the Council on a European initiative on Alzheimer's disease and other dementias - Summary of the impact assessment {COM(2009) 380 final} {SEC(2009) 1040}
Date: 2009-07-22
Institutions: European Commission
Subjects: EU action, EU programme, disease of the nervous system, health care, health care system, health costs, health policy, medical research

EN 

EN 

   EN 

 
 
COMMISSION OF THE EUROPEAN COMMUNITIES 

Brussels, 22.7.2009 
SEC(2009) 1041 final 

COMMISSION STAFF WORKING DOCUMENT 

Accompanying the 

COMMUNICATION FROM THE COMMISSION TO THE EUROPEAN 
PARLIAMENT AND TO THE COUNCIL  

on a European initiative on Alzheimer's disease and other dementias 

Summary of the Impact Assessment 

{COM(2009) 380 final} 
{SEC(2009) 1040}

EN 

   EN 

 
 
 
  
 
 
 
 
1. 

PROBLEM 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 million4. 

1.1.  Mental Capital and Well-Being, Diagnosis, and Early Intervention 

Although there is evidence that a healthy lifestyle 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 improving 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  particular,  there  is  also  a  lack  of  healthcare  and  social  care  research, 
where gaps in knowledge exist to explore the efficacy of models of care for Alzheimer’s and 
dementia patients including the care of the frail and elderly. 

There is a lack of updated epidemiological 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 under-diagnosis of Alzheimer’s disease in the EU, 
the  magnitude  of  the  problem  is  unclear  because  figures  of  prevalence  are  based  only  on 
diagnosed cases. 

1.3. 

Solidarity, Treatment, Care and Financing 

Although  there  are  good  practices  emerging  across  the  EU  with  regard  to  diagnosis, 
treatment, care, and financing of responses to these 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 

2 
3 
4 
5 
6 

Alzheimer’s  disease:  Scientific,  medical  and  societal  implications,  Synthesis  and  recommendations. 
Collective  expert  report  from  INSERM  (French  National  Institute  for  health  and  medical  research), 
2007. 
Alzheimer Europe (2006) Dementia in Europe Yearbook 2006. 
Ferri et al. (2005) The Lancet 366: 2112-2117. 
http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf 
Alzheimer Europe (2008) Dementia in Europe Yearbook. 
Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) The Gerontologist 45:177-185. 

EN 

2 

   EN 

 
                                                 
For some aspects, like the expected workforce shortages in the formal long-term care sector 
and the financing of social protection for people with neurodegenerative 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.  

Rights, Autonomy and Dignity 

1.4. 
Articles  25,  26,  and  35  of  the  Charter  of  Fundamental  Rights  of  the  European  Union7 
(2000/C364/01) refer to the situation 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-discrimination 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, exclusion, 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. 

ANALYSIS OF SUBSIDIARITY 

A Commission initiative in the field of Alzheimer’s disease reflects 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  Member  States  to  develop  an  action  plan  to 
tackle Alzheimer’s disease. 

Political leadership at the European 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 Alzheimer’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 qualitative and quantitative data and analysis 
of the burden of Alzheimer’s disease in the EU; however, the project finished  July 2009, and 
there  is  now  a  need  to  evaluate  what  the  options  are  for  taking  this  work  forward.  Without 
further action, the progress achieved by the project could well be lost.  

3. 

OBJECTIVES 

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 
8 
9 
10 

http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2000:364:0001:0022:EN:PDF 
http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf 
http://www.consilium.europa.eu/ueDocs/cms_Data/docs/pressData/en/lsa/104778.pdf 
http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//NONSGML+WDECL+P6-DCL-2008-
0080+0+DOC+PDF+V0//EN&language=EN 

EN 

3 

   EN 

 
                                                 
3.2. 

Better  understanding  of  Alzheimer’s  disease  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  best  practices  in  the 

training of dementia caregivers. 

3.3. 

Supporting national solidarity with regard to dementias 

–  Mapping  and  describing  better  the  existing  and  emerging  good  practices  related  to 

treatment and care and improving the dissemination of such practices; 

–  Developing  quality  frameworks  for  medical  and  social  care  services  for  people  with 

dementias; 

–  Empowering  national  and  international  Alzheimer’s  associations  and  relevant  patients’ 

organisations. 

3.4. 

Respecting the rights of people with dementias 

–  Recognising  the  mental  capital  of  older  adults  and  reducing  the  stigma  associated 

Alzheimer’s disease and other dementias; 

–  Sharing  best  practice  on  respecting  the  rights  of  vulnerable  adults  and  tackling  patient 

abuse. 

4. 

POLICY 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 the EuroCoDe project has now finished, this work 
will now stop and will not be taken further except 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 individual Member States would continue. However, in MS with no 
political commitment and awareness of the dementia 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 publication of the Dementia in 
Europe  Yearbooks,  published  by  Alzheimer  Europe.  A  new  project  or  operational  grant 
funded  through  the  Health  Programme  would  support  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 Europe, and participation in international fora to 
disseminate the data. 

11 

http://ec.europa.eu/health/ph_programme/pgm2008_2013_en.htm 

EN 

4 

   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, research, and legal rights in order 
to  ensure  coherent  overall  actions.  A  Communication  would  be  adopted  jointly  with  a 
proposal from the Directorate-General for Research for a Council Recommendation for Joint 
Programming  of  research  in  the  field  neurodegenerative  disease,  including  Alzheimer’s 
disease and dementia.  

Further actions would be supported within the scope of currently available programmes and 
resources,  in  particular  through  the  current  Health  Programme  and  the  Framework 
Programme  for  Research  and  Technological  Development.  Cooperative  actions  between 
several  Member  States  could  be  achieved  through  voluntary  participation  in  a  Joint  Action 
financed under the Health Programme. 

4.4. 

Formal Programme and European action plan 

The  establishment  of  a  European  action  plan  would  be  supported  by  a  specific  new 
programme with additional funding beyond existing allocations. This would provide a single 
detailed and funded strategy for Alzheimer's disease and other dementias at Community level, 
and would develop specific projects on Alzheimer's disease and other dementias in a similar 
way to the previous specific initiative on Alzheimer's disease and other dementias used during 
the  period  1996-1998.  The  establishment  of  the  formal  programme  would  enable  a  greater 
degree of funding to be available to achieve the objectives in a more comprehensive manner. 

5. 

ANALYSIS OF IMPACT 

It  has  been  considered  that  any  initiative  that  improves  the  situation  for  Alzheimer’s  and 
dementia patients will bring social benefits, such as improving equity of access, support their 
that  promotes 
dignity,  and  help  combat  stigmatisation.  Furthermore,  any 
coordination and supports more efficient use of resources will bring economic benefits. 

initiative 

Quantitative  information  given  here  is  therefore  limited  to  the  current  economic  and  social 
burden  of  dementia,  costs  of  action  plans  at  national  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  disease,  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,  the  total  direct  and  informal  care  costs  of 
Alzheimer’s  disease  and  other  dementias  in  2005  were  €130bn  for  EU27  (€21 000  per 
patient); 56% of costs were informal care12. 

As  a  result  of  inaction,  there  will  be  no  immediate  burden  on  public  authorities  at  different 
levels of government, nor any additional funding requirements at EU-level. However, in the 
longer term, costs in public healthcare provision on long-term care in the Member States will 
increase with the increasing burden of an ageing society, without the benefit of coordinated 
sharing of experience and best practice across the EU. 

12 

Alzheimer Europe (2008) Dementia in Europe Yearbook 2008. 

EN 

5 

   EN 

 
                                                 
5.2. 

Report taking forward the work of the EuroCoDe project 

A report would highlight the relevant issues regarding 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  reporting  would  be  covered  through  EU  funding, 
possibility through the establishment 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 regarding Alzheimer's disease at European level. 
Thorough  knowledge  on  the  magnitude,  prevalence,  and  incidence  of  the  disease  would  be 
achieved.  This  would  provide  a  solid  basis  for  planning  prevention,  early  intervention  and 
health and social care provision. Such an action could contribute to reducing the inequity gap 
of healthcare service provision and best practice in primary prevention. 

The technical work involved, coordinated notably through the relevant strands of the Mental 
Health  Pact,  would  be  subsidized  by  the  EU  through  support  from  the  existing  Health 
Programme  and  Framework  Programme  for  Research  and  Technological  Development.  By 
centralising  efforts,  this  will  be  more  efficient  and  less  burdensome  for  national  health 
systems and public authorities. 

There  may  well  be  some  direct  cost  and  administrative  burden  for  public  authorities  at 
different 
implement 
recommendations  resulting  from  associated  projects  of  the  initiative,  and  through  voluntary 
participation in joint actions. 

levels  of  government 

they  attempt 

the  short 

term  as 

to 

in 

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 Alzheimer’s Plan would undermine the 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. 

COMPARING 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 

6 

   EN 

 
inefficiencies. 

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. 

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 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 
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. 

Report 

Communication 

Action Plan 

An action plan would achieve the same 
EU-level objectives as a Communication 
whilst providing a single detailed and 
funded strategy. 

Council or the 
Parliament at all. 

any of the objectives 
outlined in this impact 
assessment. 

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. 

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. 

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. 

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. 

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.. 

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 

7 

   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. 

MONITORING AND EVALUATION 

This initiative does not require the collection of new statistical data, but it rather addresses the 
problem  of  incompatible  and  incomplete  sources  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  objectives  will  be  established  based  on  the  ongoing  works  of  the 
initiative. 

EN 

8 

   EN