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 - Impact Assessment {COM(2009) 380 final} {SEC(2009) 1041}
Date: 2009-07-22
Institutions: European Commission
Subjects: EU action, EU programme, activity report, 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) 1040 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 

Impact Assessment 

{COM(2009) 380 final} 
{SEC(2009) 1041}

EN 

   EN 

 
 
 
  
 
 
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 

Impact Assessment 

1. 

EXECUTIVE SUMMARY 

There are currently  over six million people with dementia  in  the  European  Union;  the  most 
common  form  of  dementia  is  Alzheimer’s  disease  accounting  for  about  70%  of  dementia 
cases. It is predicted that this number of dementia patients will double in the next 20 years. 

Dementias are one of the most important causes of disability in the elderly, and it is therefore 
necessary  to  take  all  available  steps  that  can  help  to  reduce  this  burden.  The  condition  has 
very substantial impacts on public expenditure that will increase even further in the future in 
the context of an ageing society. 

The problems posed by Alzheimer’s disease and dementia can be categorized as a lacking in 
four  key  areas:  (i)  promotion  of  mental  well-being,  preservation  of  mental  capital, 
prevention  of  onset,  and  early  intervention;  (ii)  research  coordination;  (iii)  solidarity, 
treatment, care, financing; and (iv) rights, autonomy, and dignity. A lack of coordination 
and coherence in these areas in hampering development in Europe in tackling the increasing 
problem of Alzheimer’s disease and dementia in a society caring for an ageing population. 

A  Commission  initiative  in  the  field  of  Alzheimer’s  disease  reflects  broader  mental  capital 
work  underway  in  many  Member  States  and  at  EU  level.  Specifically,  it  responds  to  the 
priority  attached  to  European  action  on  this  issue  by  the  Member  States,  as  shown  by  the 
Council  Conclusions1  adopted  under  the  French  Presidency,  and  the  Written  Declaration  of 
the European Parliament on the priorities in the fight against Alzheimer’s disease. 

Based  on  tackling  these  problems  through  specific  objectives  outlined  in  this  impact 
assessment, four policy options are proposed; a baseline option would not take forward any 
additional  work  in  the  field  of  Alzheimer’s  disease  and  dementia,  however  the  remaining 
three options propose mechanisms that could achieve these objectives with varying degrees of 
efficiency and efficacy. 

1 

http://www.consilium.europa.eu/ueDocs/cms_Data/docs/pressData/en/lsa/104778.pdf 

EN 

2 

   EN 

 
 
 
 
                                                 
2. 

PROCEDURAL ISSUES AND CONSULTATION OF INTERESTED PARTIES 

2.1. 

Identification 

The  Lead  Directorate-General  for  this  initiative  is  the  Directorate-General  for  Health  and 
Consumers (DG SANCO). 

Associated Directorates-General are the Directorates-General for Employment, Social Affairs 
and  Equal  Opportunities  (DG  EMPL),  Research  (DG  RTD)  and  Justice,  Freedom  and 
Security (DG JLS). 

2.2. 

Organisation and Timing 

The  Commission  Communication  on  Alzheimer’s  disease  and  other  dementias  has  been 
included as a priority initiative in the Commission Legislative Work Programme 2009.2 

The roadmap was completed in December 2008, and an interservice meeting with DG RTD 
and DG EMPL was held on 29 January, 2009. 

The  Impact  Assessment  Steering  Group  (IASG)  was  established,  with  the  following  DGs 
nominating  representatives:  SANCO,  RTD,  EMPL,  JLS,  ESTAT,  SG,  ENTR.  DGs  BUDG, 
ECFIN,  SJ,  and  ENV  were  invited  but  no  nomination  was  made.  The  Impact  Assessment 
Steering  Group  first  met  on  13  March,  with  subsequent  meetings  held  on  17  March  and  23 
March, 2009. 

A  meeting  of  the  European  Union  Panel  of  Experts  on  Alzheimer’s  Disease  and  Dementia 
was convened on the 17 March to coincide with the second meeting of the IASG. 

The Impact Assessment was submitted on 25 March and the Impact Assessment Board was 
consulted on 22 April, 2009. 

Consultation and Expertise 

2.3. 
The  European  Pact  for  Mental  Health  and  Well-being3  was  established  at  an  EU  High-
Level Conference “Together for Mental Health and Well-being,” taking place in Brussels on 
13 June, 2008. The implementation of the Pact focuses on five priority themes: (i) Prevention 
of Suicide and Depression, (ii) Mental Health in Youth and Education, (iii) Mental Health in 
Workplace  Settings,  (iv)  Mental  Health  in  Older  People,  and  (v)  Combating  Stigma  and 
Social  Exclusion.  Within  the  context  of  the  priority  on  Mental  Health  in  Older  People,  a 
collaborative effort involving researchers, policy makers and stakeholders from across the EU 
established  a  consensus  paper4  providing  an  analysis  of  trends  as  well  as  proposing  a 
framework  for  action,  and  includes  Alzheimer's  disease  and  other  dementias  as  a  key 
challenge in age-related mental health. 

The  Impact  Assessment  Steering  Group  (IASG)  met  on  13  March,  17  March,  and  23 
March, 2009. The comments received from these two meetings and the contributions from the 
other  services  have  been  incorporated  into  this  impact  assessment  as  comprehensively  as 
(Section 
possible. The minutes of these three meetings can be found in the 9. 
9),  but  the  discussions  essentially  focussed  on  the  clarification  and  restructuring  of  the 
problem definition, and elaboration and confirmation of the objectives. 

Annexes 

The European Union Panel of Experts on Alzheimer’s Disease was established in January, 
2008,  on  the  basis  of  the  work  of  the  EuroCoDe  (European  Collaboration  on  Dementia) 

2 
3 
4 

http://ec.europa.eu/atwork/programmes/docs/clwp2009_roadmap_priority_initiatives_en.pdf 
http://ec.europa.eu/health/ph_determinants/life_style/mental/docs/pact_en.pdf 
http://ec.europa.eu/health/ph_determinants/life_style/mental/docs/consensus_older_en.pdf 

EN 

3 

   EN 

 
                                                 
Project. The Panel was convened to advise and assist the Commission on identifying actions 
on  best  practices  for  prevention,  treatment,  protection,  and  patients’  rights.  The  Panel  of 
Experts  met  on  17  March,  2009.  The  minutes  of  this  meeting  are  attached  as  an  annex 
(Section  9).  The  Panel  broadly  endorsed  the  impact  analysis  and  options  considered  by  the 
Commission,  whilst  also  providing  many  references  and  data  that  enabled  to  more  clearly 
define the context of the problem in the field of Alzheimer’s disease and dementia, to further 
develop the option of a platform for voluntary cooperation at European level, and to reinforce 
the impact analysis of Community action in this area. Their comments have been taken into 
account  in  this  impact  assessment,  in  particular  through  including  substantial  additional 
information  contributed  on  the  problem  and  impacts,  and  refining  the  options  to  include  a 
mechanism for voluntary cooperation. 

The  Impact  Assessment  Board  was  consulted  on  22  April,  2009.  Following  the  Board's 
opinion (attached as an annex in section 9), the following modifications have been made. 

–  In the Problem Definition (Section 3.4), greater emphasis of the existing disparities in the 

situation concerning Alzheimer’s in the Member States has been made.  

–  Furthermore, the problem definition on rights, autonomy, and dignity have been clarified 
and  expanded,  particularly  referring  to  the  United  Nations  Convention  on  the  Rights  of 
Persons with Disabilities. 

–  Under Current Action (Section 3.3), reference has been made to the EU Disability Action 

Plan and the anticipated Communication on Reducing Health Inequalities. 

–  In the policy options, there is further clarification of the complementarity of the proposed 
for 
field 
including  Alzheimer’s  disease  and  dementia  with  a 

Joint  Programming  of 

research 

the 

in 

Council  Recommendation 
neurodegenerative  disease, 
Commission Communication. 

–  An additional table comparing the policy options against a baseline scenario and a clear set 
of criteria has been added. Furthermore, a preferred option has been clearly identified. 

–  The data needs have been clarified. The Monitoring and Evaluation (Section 8) has been 

expanded. 

–  A separate Executive Summary has also been prepared. 

3. 

CONTEXT AND PROBLEM DEFINITION 

Dementias  are  neurodegenerative  diseases  that  have  varying  ætiologies:  neurodegenerative 
vascular  causes,  following  e.g.  atherosclerosis  and  stroke;  toxic  causes,  following,  e.g. 
chronic  alcohol  abuses;  and  metabolic/inflammatory  causes,  e.g.  from  an  increase  in  the 
production or accumulation of a specific protein (β-amyloid protein). 

The most common forms of dementia in the European Union are Alzheimer’s disease (about 
70%  of  cases),  and  vascular  dementia  (less  than  30%).5  Other  causes  are  Pick's  disease, 
Binswanger's diseases, Lewy-Body dementia, and alcoholic dementia, amongst others. 

5 

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. 

EN 

4 

   EN 

 
                                                 
3.1. 

Health and Social Burden of Alzheimer’s disease and Dementias 

Dementia  is  a  terminal  disorder  characterized  by  a  decline  in  mental  ability  that  usually 
progresses slowly, in which memory, thinking, and judgement are impaired, and personality 
may deteriorate. 

The  earliest  and  most  frequent  manifestations  of  Alzheimer's  disease  and  dementias  are 
benign  memory  disorders  relating  to  loss  of  short-term  recollection  and,  in  most  cases, 
concerning  details  of  everyday  life.  There  is  then  a  slow  evolution  of  the  symptoms 
characterized  by  organizational  and  programming  disorders  (executive  functions),  language 
difficulties  (aphasia),  difficulty  in  movement  (apraxia)  and  defective  recognition  of  objects, 
places and persons (agnosia). 

In addition to the effects of the disease on the patient, the consequential progressive loss of 
autonomy and inability to make decisions increases the burden on caregivers. It is difficult to 
put a figure on the number of caregivers for persons suffering from Alzheimer’s disease, but it 
could  be  estimated  that  in  every  family  with  a  patient  there  could  be  an  average  of  three 
persons directly concerned by the disease. That means an estimated 19 million Europeans are 
directly concerned by dementias. 

The societal and economic burden of Alzheimer's disease, the major contributor to dementia, 
is growing rapidly in Europe due to increasing lifespan and a decreasing ratio of working to 
retired populations. The suffering of millions of individuals and their families, as well as the 
costs to the European healthcare systems, are dramatic. Dementia is one of the main causes of 
disability  later  in  life,  ahead  of  some  cancers,  cerebrovascular  disease,  and  ischæmic  heart 
disease. 

All stakeholders involved, including academic institutions, industry, patients' associations and 
funding  agencies,  are  well  aware  of  the  challenge  ahead  and  of  the  necessity  to  support 
research  on  Alzheimer  disease  and  on  neurodegenerative  diseases  in  general.  Alzheimer’s 
disease  and  dementia  is  the  fourth  leading  cause  of  burden  of  disease  (DALYs)  in  high-
income countries. 

Our shared European fundamental values mean that, across the European Union, we have a 
collective responsibility to ensure that people can age with dignity, in good health, and with 
same rights for health and social care as any other population group. 

Economic Burden of Alzheimer’s disease and Dementias 

3.2. 
There  are  currently  over  six  million  people  with  dementia  in  the  European  Union6  and  it  is 
predicted that this number will double in the next 20 years.7 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.8  

The European population is ageing, and the oldest old (persons aged over 80) are the fastest 
growing  cohort  in  most  European  countries.  Considering  70%  of  diagnosed  Alzheimer’s 
patients  are  aged  75  and  over,  with  the  increasing  proportion  of  the  elderly  in  many 
populations,  the  number  of  dementia  patients  will  also  rise.  Dementia  is  one  of  the  most 
important causes of disability in the elderly. It is expected that dementia, of which Alzheimer 
is  currently  the  most  common  form,  will  feature  among  the  main  challenges  for  healthcare 
systems in the upcoming decades. 

6 
7 
8 

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 

EN 

5 

   EN 

 
                                                 
The following table shows that the prevalence of dementia and Alzheimer’s is closely linked 
to age (although it also appears early in some cases) and seems to affect elder women slightly 
more than men.  

–  Age group

–  Male 

–  Female 

–  30-59 

–  60-64 

–  65-69 

–  70-74 

–  75-79 

–  80-84 

–  85-89 

–  90-94 

–  95-99 

–  0,16 % 

–  0,09 % 

–  1,58 % 

–  0,47 % 

–  2,17 % 

–  1,10 % 

–  4,61 % 

–  3,86 % 

–  5,04 % 

–  6,67 % 

–  12,12 %

–  13,50 % 

–  18,45 %

–  22,76 % 

–  32,10 %

–  32,25 % 

–  31,58 %

–  36,00 % 

–  Source: European Community Concerted Action on the Epidemiology and Prevention of Dementia 

group EURODEM 

Alzheimer’s disease and dementia presents a common challenge to all Member States; figures 
for dementia prevalence in the EU represent roughly a similar proportion of the population in 
all  Member  States.  Furthermore,  with  the  ageing  of  European  society,  both  the  absolute 
figures  and  percentage  of  the  overall  population  with  dementia  have  increased  substantially 
over the past 45 years. According to estimates, the number of people with dementia over the 
age  of  60  in  the  EURO  A  region  will  increase  from  4.9  million  in  2001  to  9.9  million  in 
2040.9 

9 

http://www.dementia-in-europe.eu/?lm2=OWQAUJKRXAEZ 

EN 

6 

   EN 

 
 
                                                 
Source: Eurostat, EUROPOP2008 convergence scenario. 

Dementias pose particular challenges to the way health care is provided nowadays: Dementia 
patients need coordinated care and today's healthcare systems, which have been set up with a 
focus on acute care, may not necessarily be equipped to deal with dementia patients without 
organisational  restructuring.  Dementias  are  expected  to  put  additional  strains  on  the 
healthcare  budgets  of  ageing  societies,  in  particular  if  healthcare  systems  do  not  manage  to 
adapt to the new challenges and improve efficiency in delivery of care for dementia patients. 
Achieving  to  accommodate  the  needs  of  dementia  patients  within  the  limits  of  available 
healthcare  budgets  will  ultimately  determine  the  performance  of  the  future  healthcare 
provision in Europe.  

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 care.10 

Policy  measures  which  can  either  reduce  disability,  limit  the  need  for  formal  care  amongst 
elderly  citizens  with  disabilities,  favour  formal  care  provision  at  home  rather  than  in 
institutions or, more generally, improve the cost-effectiveness of long-term care provision will 
contribute to limit the expected increase in public expenditure. It is therefore necessary to take 
all available steps that can help to reduce this burden. 

3.3. 

Current Actions 

Given  the  expected  importance  of  dementia  and  Alzheimer  for  the  healthcare  systems  in 
Europe  in  the  medium-term  future,  it  is  not  surprising  that  Member  States  have  started 
recognising  the  need  for  specific  strategies  for  Alzheimer’s  and  dementia;  France11, 
Norway12, and the United Kingdom (England13 and Scotland14 only) have already established 
plans. The scope of these plans vary; the French plan covers 44 distinct measures and costs 
€1.6  billion  over  five  years,  whereas  the  English  National  Dementia  Strategy  is  backed  by 
£150  million  over  the  first  two  years  and  includes  the  introduction  of  a  dementia  specialist 
into every general hospital and care home and for mental health teams to assess people with 
dementia.  However,  these  do  not  cover  all  the  costs  of  care  related  to  dementias;  it  is  not 
possible  to  separate  out  costs  for  dementias  from  health  and  social  care  expenditure  in 
general, and so these figures are underestimates of real expenditure.  

A few other Member States are currently considering similar action, such as Italy and Spain. 
However,  there  are  also  Member  States  of  the  European  Union  where  Alzheimer  and  other 
dementia  have  not  been  given  special  attention  yet  –  despite  the  fact  that  all  EU  Member 
States are expected to have similarly high percentages and growth rates of elderly. 

At the EU level, the following actions have been carried out so far: 
EUROCODE  (European  Collaboration  on  Dementia)15  Project,  coordinated  by  Alzheimer 
Europe,  was  selected  for  funding  from  2006  to  2009  through  the  Health  Programme. 
Deliverables of the project included: 

(i)  Devise new consensual prevalence rates for dementia 

10 
11 
12 
13

14 
15 

EN 

Alzheimer Europe (2008) Dementia in Europe Yearbook 2008 
http://www.premier-ministre.gouv.fr/IMG/pdf/plan_2008_2012.pdf 
http://www.regjeringen.no/upload/HOD/Dokumenter%20KTA/DementiaPlan2015.pdf 

http://www.dh.gov.uk/en/socialcare/deliveringadultsocialcare/olderpeople/nationaldementiastra

tegy/index.htm 
http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/DFMH/dementia 
http://ec.europa.eu/health/ph_projects/2005/action1/action1_2005_10_en.htm  

7 

   EN 

 
                                                 
 
(ii)  Guidelines on diagnosis and treatment; 

(iii)  Guidelines on non-pharmacological interventions; 

(iv)  Prevention strategies; 

(v)  Analysis of socio-economic cost of Alzheimer’s disease; 

(vi) 

Inventory of social support systems. 

This  project,  which  ended  in  2008,  prepared  the  ground  for  harmonised  data  gathering  on 
epidemiology and started developing the knowledge base on best practice.  

Dementia in Europe Yearbooks have been published by Alzheimer Europe in 2006, 2007, 
and 2008. 

European  Pact  for  Mental  Health  and  Well-Being,  adopted  in  2008,  focuses  on  four 
priority themes: prevention of suicide and depression, mental health in youth and education, 
mental health in workplace settings and mental health in older people. 

The Open Method of Coordination (OMC) in the social field provides a framework for the 
EU Member States to reform their social protection systems on the basis of policy exchanges 
and mutual learning. Within the OMC, Member States identify common challenges and agree 
common objectives16 for universal access, quality, and sustainability in healthcare and long-
term care. In national strategic reports,17 Member States set out how they will develop their 
policies to meet the common objectives.  

The  EU  support  Member  States'  actions  in  addressing  common  challenges  and  objectives 
through  the  OMC  by  facilitating  dialogue  about  experiences  and  the  exchange  of  good 
practices  regarding  healthcare  and  long-term  care.  It  also  supports  the  development  of 
innovative  good  practice  through  its  funding  programmes.  The  exchange  can  take  place  in 
peer-reviews,  with  a  limited  number  of  participants  focusing  on  a  specific  theme,  or  in 
conferences with wider discussions. 

Following notions in the 2008 National Strategic Reports and the synthesis in the 2009 Joint 
Report18, a specific peer review will be held in France in May 2009 on “Alzheimer's disease 
and other related diseases: how to cope with crisis situations occurring in the patient's home?” 
(focusing  on  non-medical  treatment).  This  will  be  followed  by  a  conference  in  September, 
under the Swedish Presidency of the Council, on Healthy and Dignified Ageing, including a 
workshop  on  coordination  of  care  for  persons  suffering  from  Alzheimer's  disease  and  other 
dementias.  In  addition,  the Commission  services  is  considering  to  arrange  in  mid-2010  an 
additional  conference,  whose  specific  content  will  depend  on  the  results  of  the  above 
mentioned 2009 events and other sources. 

Framework  Programmes  for  Research (FP5,  FP6,  and  FP7):  €20  million  was  invested  in 
FP5  (1998-2002),  and  increased  to  €65  million  in  FP6  (2002-2006)  for  research  on 
Alzheimer's  disease  and  other  dementias.  Efforts  in  this  area  have  been  reinforced  in  FP7 
(2007-20013) within the Health theme through the areas on brain research and a new activity 
on  ‘Optimising  the  delivery  of  health  care  to  European  citizens’.  Furthermore  ageing  is  an 
overarching issue throughout the whole Health theme during FP7. This new action line within 
the  Health  Theme  aims  at  developing  new  research  methods  and  generating  the  necessary 
scientific  basis  to  underpin  informed  policy  decisions  on  health  systems  and  more  effective 

16 
17 
18 

http://ec.europa.eu/employment_social/spsi/common_objectives_en.htm 
http://ec.europa.eu/employment_social/spsi/strategy_reports_en.htm 
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2009:0058:FIN:EN:PDF 

EN 

8 

   EN 

 
                                                 
and efficient evidence-based strategies of health promotion, disease prevention, diagnosis, and 
therapy. It will reinforce health policy driven research at the European level serving to support 
the  Programme  of  Community  Action  in  the  field  of  health  (2007-2013).  Areas  covered 
include mental health, promotion strategies for healthy ageing, long-term care, and equality of 
access to care, and health systems. 

Funding  of  €29  million  has  already  been  committed  to  the  subject  of  dementia  and 
Alzheimer's disease as a result of the first two calls for proposals in the brain research area. In 
addition,  the  Framework  Programme  has  allowed  for  the  coordination  of  national  research 
activities  in  this  area  through  the  ERA-NET  projects  ERA-AGE  and  NEURON.  The  latter, 
involving 11 Member States, issued a first joint call for proposals for a value of €18.5 million 
in January 2008. 

While  no  public  health  project  on  dementia  has  been  funded  to  date  in  FP7;  there  are  three 
research  projects  addressing  health  systems  and  the  long  term  care  of  the  elderly  resulting 
from  the  second  call  –  ANCIEN,  INTERLINKS  and  SHELTER.  These  are  focussing  on 
different  aspects  within  the  organisation,  provision,  and  quality  of  long  term  care  of  the 
elderly  in  Europe.  The  overall  budget  for  these  projects  is  €8  million.  Furthermore,  other 
topics in the second call were also relevant to the ageing research agenda, such as continuity 
of  care,  disease  management  programmes,  health  outcome  measures  and  population  ageing, 
trends of population health, and a road-map for research. In the third Health call published in 
September  2008,  a  topic  on  "organisation  of  dementia  care"  was  included  and  as  a  result, 
there is likely to be one funded project in the near future. Another relevant topic in the call 
focuses on ageing cohorts, for which there is likely to be one funded project in the near future. 
Results  of  research  projects  funded  under  the  third  pillar  will  only  start  to  contribute  to  the 
evidence base in a couple of years time, thus continuous monitoring and feedback to policy 
makers will be essential. 

Exploring incentives at national or European level is being encouraged, to strengthen research 
into  dementias  and  development  of  medicinal  products.  An  example  of  action  is  the 
Innovative  Medicines  Initiative19  (IMI)  that  aims  to  support  the  faster  discovery  and 
development  of  better  medicines  for  patients  and  enhance  Europe’s  competitiveness  by 
ensuring that its biopharmaceutical sector remains a dynamic high-technology sector. The IMI 
platform  was  launched  under  the  6th  Framework  Programme  for  Research  (FP6)  as  a 
gathering of stakeholders, led by the pharmaceutical industry. 

It  is  estimated  that  the  total  public  funding  in  the  Member  States  allocated  to  dementia 
research in Europe amounted to €57 million in 2005.20 
The  EU  also  supports  the  EADC  (European  Alzheimer's  Disease  Consortium)21  a  fully 
functional  network  of  European  centres  of  excellence  working  in  the  field  of  Alzheimer's 
disease. The centres increase basic scientific understanding of and develop ways to prevent, 
slow,  or  ameliorate  the  primary  and  secondary  symptoms  of  Alzheimer's  disease  by 
facilitating trans-European research. 
The  Commission  Communication  on  Joint  Programming22  (COM(2008)  468  final), 
adopted on 15 July 2008, presented a mechanism whereby Member States engage voluntarily 
in  a  common  research  agenda.  By  enhancing  cooperation  among  those  that  develop  and 

19 
20 
21 
22 

http://imi.europa.eu/index_en.html 
P. Sobocki et al (2006) Resource allocation to brain research in Europe; Eur. J Neurol 24: 1-24. 
http://eadc.alzheimer-europe.org/introduction.html 
http://ec.europa.eu/research/press/2008/pdf/com_2008_468_en.pdf 

EN 

9 

   EN 

 
                                                 
manage research programmes, it aims to increase the efficiency and impact of national public 
research  funding  in  strategic  areas.  Research  on  Alzheimer’s  disease  is  specifically 
mentioned. 

In  April  2009,  the  Directorates-General  for  Employment  and  Social  Affairs  (EMPL)  and 
Economic and Financial Affairs (ECFIN) plan to issue a joint Communication “Addressing 
the  economic  and  budgetary  impact  of  an  ageing  population  in  the  EU:  Past 
achievements  and  future  challenges  (2009  Ageing  Report).”  The  Communication  will 
specifically  highlight  the  challenges  faced  by  healthcare  systems  caring  for  an  ageing 
population, as well as the increasing  public spending on long-term care. In order  to address 
these  challenges,  the  Communication  will  propose  actions  in  three  key  fields:  pensions, 
healthcare,  and  long-term  care;  financial  services  and  taxation;  and  education,  training,  and 
research and development. 

Enabling  people  with  disabilities  to  enjoy  their  rights  is  the  main  purpose  of  the  European 
Disability  Strategy  (2004-2010)  and  the  facilities  provided  by  the  EU  Disability  Action 
Plan (DAP) 2003-201023 will be used as appropriate. 

The  European  Commission  has  announced  a  Communication  on  Reducing  Health 
Inequalities  in  the  EU  in  its  work  programme  for  2009  as  an  initiative  on  “Solidarity  in 
Health”. One aim of this Communication is to support Member States’ actions to tackle health 
inequalities, notably by highlighting possible ways to prevent and address health inequalities, 
by encouraging greater policy coordination and best-practice exchange and through financial 
support via the Structural Funds and other EU funding instruments. 

3.4. 

Problem Definition  

Considering  the  work  and  achievements  of  previous  and  current  actions  in  the  field  of 
Alzheimer’s disease, and given the importance of dementia diseases in developed societies in 
the  near  future,  it  is  needed  to  reflect  further  on  the  future  policy  and  within  this  and  in 
particular  the  role  the  EU  can  play  here.  Highlighting  the  public  understanding  of  the 
problem,  a  national  study  showed  that  people  aged  over  65  are  more  worried  about 
developing dementia (39%) than cancer (21%), heart disease (6%) or stroke (12%).24 

The  problems  posed  by  Alzheimer’s  disease  can  be  considered  as  a  lack  of  coherence  and 
coordination,  both  at  the  national  and  EU  level,  in  four  key  areas.  These  key  areas  are 
identified and explained in this section. 

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

Although there is evidence that a healthy lifestyle can help prevent Alzheimer’s disease and 
dementia,25  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. Diagnosis of Alzheimer’s disease is particularly difficult in the 
initial and final stages of the disease. At the outset, symptoms are discreet and may be masked 
by  or  confused  with  difficulties  related  to  the  normal  ageing  process.  At  the  final  stages  of 

23 
24 
25 

http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2007:0738:FIN:EN:PDF 
Alzheimer’s Society (2008) Dementia: Out of the Shadows 
Alzheimer Europe (2008) Dementia in Europe Yearbook 

EN 

10 

   EN 

 
                                                 
cognitive  and  behavioural  degeneration,  it  is  difficult  to  find,  from  examination,  specific 
marks  of  a  disease.  Many  criteria  for  the  diagnosis  of  Alzheimer's  disease  have  been  put 
forward,  chief  among  these  are  the  ICD-10  (World  Health  Organization,  1993),  DSM-IV 
(American  Psychiatric  Association,  1994)  and  NINCDS-ADRDA  (National  Institute  of 
Neurological  and  Communicative  Diseases  and  Stroke/Alzheimer’s  Disease  and  Related 
Disorders Association, 1984).  

Dementia is a terminal disorder, but people may live with their dementia for 7-12 years after 
diagnosis;  however,  currently  only  a  third  of  people  with  dementia  receive  a  formal 
diagnosis  or  have  contact  with  specialist  services  at  any  time  during  their  illness.  This 
underdiagnosis is in part due to the aforementioned difficulties in diagnosing dementias; for 
example,  in  the  United  Kingdom,  only  31%  of  general  practitioners  believe  they  have 
received sufficient basic and post-qualifying training to diagnose and manage dementia.26 

3.4.1.  Research 

There is a lack of coordination of research, which is hampering potential for action at the 
European  level,  including  identifying  mechanisms  to  ensure  feedback  on  the  emerging 
evidence base generated by EU research projects to stakeholders, in particular policy makers. 
There are no effective health care treatments for stopping dementia, which is why the social 
care aspect plays an important role in treating the disease, with  family  members  an  integral 
part of this process. 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.  In  particular,  the  effects  of 
behavioural  and  psychological  symptoms  of  dementia  (BPSD)  include  distress  both  for  the 
person with dementia and their family carers, and, in cases of early institutionalization27, for 
residential  care  staff.  BPSD  decreased  by  60%  after  two  months  of  the  implementation  of 
staff  education  and  training  programme  (e.g.  group  teaching  session  for  staff,  individual 
instruction  cards,  and  interactive  coaching  sessions),  but  further  research  is  needed  to  make 
best use of these approaches.28 

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. 

26 
27 
28 

National Audit Office (2007) Improving services and support for people with dementia 
Balestreri et al. (2000) International Psychogeriatrics 12: 59–62. 
Deudon et al. (2009) Int J Geriatr Psychiatry 24: 1–10. 

EN 

11 

   EN 

 
                                                 
29 

The  graph  above  shows  the  size  of  research  public  funding,  an  assessment  of  the  degree  of 
coordination/fragmentation  at  European  level,  and  the  relative  size  of  European  public 
funding  compared  to  the  US  for  some  Science  &  Technology  fields.  Dementia  and 
Alzheimer’s research score very poorly for all of these different criteria (the smallest bubble 
at the bottom left hand corner): public funding, coordination of research efforts at European 
level, and the relative size of European public funding compared to the US. 

3.4.2. 

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.  There  is  both  a  need  for  better  descriptions  of  more 
existing  and  emerging  good  practices,  as  well  as  improving  the  dissemination  of  the 
information  and  strengthening  specific  exchange  and  dialogue  about  such  practices  and 
experiences. 

An  Alzheimer  Europe  survey  and  other  studies  in  this  field  confirm  that  people  with 
Alzheimer’s  disease  do  not  have  equal  access  to  dementia  treatments  in  Europe.  Rather, 
access  is  subject  to  a  great  many  restrictions  and  there  is  huge  variation  in  access  between 
European countries. 

Dementia is  among the biggest challenges for future  healthcare systems  and budgets, and it 
will  be  indispensable  for  MS  to  reflect  on  efficiency  improvements  as  to  ensure  the 
sustainability of healthcare budgets as stated in the Lisbon reform agenda. There seems to be 
room for exchange of best practice on how physical and technical infrastructure can best be 
adapted to the needs of dementia patients. To give just one example: although early provision 
of  support  at  home  can  decrease  institutionalization  by  22%,30  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. 

An inventory of dementia guidelines across Europe revealed that guidelines for psychosocial 
intervention  have  only  been  found  in  five  countries.  Furthermore,  there  are  large 
discrepancies  between  the  different  European  countries  studied  in  the  EuroCoDe  project 

29 
30 

Commission Communication on Joint Programming COM(2008) 468 final 
Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) The Gerontologist 45:177-185 

EN 

12 

   EN 

 
                                                 
regarding the service provision for dementia patients. Occasionally, there was even evidence 
of  disparity  within  countries.  Similarly,  the  degree  of  governmental  support  also  varies 
significantly  between  European  countries,  and  the  organisation  of  social  support  is  often 
fragmented. 

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.  

Member States have varying levels of awareness of the importance of dementia as one of the 
most  burdensome  and  demanding  challenges  for  the  future  healthcare  and  health  policy 
challenge and linked to that varying levels of awareness of the challenges posed on the current 
healthcare  systems  and  the  need  for  a  strong  political  commitment  and  coordinated 
approaches. 

3.4.3.  Rights, Autonomy and Dignity 
Several  articles  of  the  Charter  of  Fundamental  Rights  of  the  European  Union31 
(2000/C364/01) refer to the situation of patients suffering from Alzheimer's disease and other 
dementias. Article 25 stipulates, “the Union recognises and respects the rights of the elderly to 
lead a life of dignity and independence and to participate in social and cultural life.” Article 
26  “recognises  and  respects  the  right  of  persons  with  disabilities  to  benefit  from  measures 
designed to ensure their independence, social and occupational integration and participation in 
the  life  of  the  community.”  Finally,  Article  35  states,  “everyone  has  the  right  of  access  to 
preventive  health  care  and  the  right  to  benefit  from  medical  treatment  under  the  conditions 
established by national laws and practices. A high level of human health protection shall be 
ensured in the definition and implementation of all Union policies and activities.” 
The  United  Nations  Convention  on  the  Rights  of  Persons  with  Disabilities32  states  in 
Article 1 that: 

“The purpose of the present Convention is to promote, protect and ensure the full and 
equal enjoyment of all human rights and fundamental freedoms by all persons with 
disabilities, and to promote respect for their inherent dignity. 

Persons  with  disabilities  include  those  who  have  long-term  physical,  mental, 
intellectual  or  sensory  impairments  which  in  interaction  with  various  barriers  may 
hinder their full and effective participation in society on an equal basis with others.” 

In  this  sense,  Alzheimer’s  disease  patients  can  be  included  as  having  “long-term  mental 
impairments”  and  thus  have  their  rights  to  non-discrimination  and  respect  for  dignity  and 
autonomy protected by the Convention as stipulated in Article 3. 

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.  These  provide  barriers  to  social  inclusion  and  equal 
citizenship. 

Studies have shown that around 50% of the public believe that there is a stigma attached to 
dementia.33  Furthermore,  carers  can  also  experience  social  exclusion  due  to  the  effects  of 

31 
32 

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 

EN 

13 

   EN 

 
                                                 
dementia on their loved ones; however, maintaining social contact helps to preserve autonomy 
and  physical  and  mental  well-being  for  longer,  reducing  the  need  for  assistance  and 
preventing social isolation and depression.34 

3.5. 

Rationale for European Action 

The  policy  challenge  of  tackling  Alzheimer  has  be  seen  as  part  of  ongoing  debates  on 
reforming healthcare and welfare systems, following up to Hampton Court 2005, the Lisbon 
reform agenda (here in particular the need to ensure financial sustainability of the health care 
system), the communication on an ageing Europe of April 2009 and finally also the renewed 
EU  Sustainable  Development  Strategy.  It  also  links  more  particularly  with  the  work  on 
improving the efficiency and effectiveness of healthcare and pension spending in the OMC on 
health care.  

3.5.1.  Legal Basis 

In  the  field  of  public  health,  Community  action  shall  be  directed  towards  the  prevention  of 
human  illness  and  diseases  as  well  as  the  improvement  of  public  health  in  general.  The 
principal responsibility for health services and medical care lies with the Member States, and 
it is thus primarily for Member States to respond to the challenge of dementias. 

Nevertheless,  as  set  out  in  Article  152  of  the  Treaty,  the  Community  shall  complement 
national policies, encourage cooperation between the Member States, and lend support to their 
action.  There  is  substantial  potential  for  Community  added-value  in  addressing  the  specific 
problems set out above in order to help ensure effective and efficient recognition, prevention, 
diagnosis,  treatment,  care,  and  research  for  Alzheimer's  diseases  and  other  dementias  in 
Europe. 

As  set  out  in  Article  165  of  the  Treaty,  the  Community  and  the  Member  States  shall 
coordinate  their  research  and  technological  development  activities  to  ensure  that  national 
policies  and  Community  policy  are  mutually  consistent.  In  close  cooperation  with  the 
Member States, the Commission may take any useful initiative to promote coordination. The 
Competitiveness Council on 26 September 2008, identified Alzheimer’s disease as a good area 
for testing innovative ways of pooling national expertise and resources on a voluntary basis, and 
invited  Member  States,  with  the  help  of  the Commission,  to  explore  proposals  to  establish 
closer  and  robust  Member  States  collaborations  in  this  respect.  The  December  2008 
Competitiveness Council confirmed  the  necessity  of  launching  a  pilot  Joint  Programming 
initiative on neurodegenerative diseases, including Alzheimer’s disease. 

3.5.2. 

Subsidiarity 

The  subsidiarity  test  asks  whether  EU  action  is  necessary  (the  'necessity  test'),  or  whether 
action by Member States is sufficient to solve the problem. It asks whether action at EU level 
adds  value  to  the  work  done  by  Member  States  (the  'added-value  test'),  and  it  asks  if  the 
measures chosen are proportionate to the objectives (the 'boundary test'). 

3.5.2.1.  Necessity Test 

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 

33 
34 

Alzheimer’s Society (2008) Dementia: Out of the Shadows 
Alzheimer Europe (2008) Dementia in Europe Yearbook 

EN 

14 

   EN 

 
                                                                                                                                                         
Council  Conclusions35  adopted  under  the  French  Presidency  on  16  December,  2008.  The 
Conclusions call on the Commission to adopt an initiative in 2009 focussed on: 

(i)  Research; 

(ii)  Prevention and diagnosis; 

(iii)  Epidemiological information on prevalence and incidence; 

(iv)  The ethical dimension of the disease. 

The Written Declaration of the European Parliament36 (0080/2008) calls on the Commission, 
Council, and governments of the Member States to develop an action plan to: 

(i) 

Promote research into ætiology, prevention, and treatment; 

(ii) 

Improve early diagnosis; 

(iii)  Simplify procedures for patients and carers; 

(iv)  Promote and support Alzheimer’s associations. 

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. 

Moreover,  effective  planning  and  response  to  this  substantial  issue  cannot  be  sufficiently 
achieved by Member States acting individually, as it depends on comparable data about the 
projected  burden  of  the  disease,  availability  of  professional  carers  and  impact  on  public 
finances across the EU as a whole. There is therefore a need for comparable data, which can 
only be collected at EU level, to allow for planning and adaptation of health services at the 
Member State level, and to manage the substantial impact of these conditions on future public 
finances across the EU. 

The EuroCoDe project  (see  Section  3.3) has up until now provided  accurate  qualitative and 
quantitative data and analysis of the burden of Alzheimer’s disease in the EU; however, the 
project has finished , and there is now a need to evaluate what the options are for taking this 
work forward.  The  project  has  provided a solid basis  for  taking forward the  sharing  of best 
practices  through  the  recommendations  it  has  established,  and  the  analysis  of  the 
socioeconomic  cost  of  Alzheimer’s  disease  will  need  to  be  kept  updated  to  provide  a 
continued view of the burden of the disease. Without further action, the progress achieved by 
the project could well be lost.  

3.5.2.2.  Added-Value Test 

Through coordination of national and European research activities and other actions enabling 
greater  exchange  of  best  practice  and  cooperation,  Community  action  would  help  make 
efficient  use  of  the  limited  resources  and  available  funding  programmes  in  the  European 
Union. In particular, the EU is well placed to coordinate cross-border research efforts in the 

35 
36 

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 

15 

   EN 

 
                                                 
area; by providing a shared basis diagnosis this will enable the currently fragmented patient 
populations  to  be  integrated  and  thus  provide  a  platform  for  the  pharmaceutical  industry  to 
develop  better  responses  in  the  future.  Any  resulting  increase  in  efficiency  of  care  would 
support  future  financial  sustainability  of  national  healthcare  systems  faced  with  an  ageing 
society.  Given  the  large  sums  involved  for  Member  States,  even  a  small  additional 
improvement through European cooperation would add substantial value in real terms. 

trans-national  cooperation, 

In  addition,  the  main  added-value  of  collaborative  health  research  at  Community  level  is 
obtained  from 
the  integration  of  relevant  activities  and 
participants,  and  the  concentration  of  European  effort  on  fewer  priorities.  In  particular,  EU 
health  research  brings  down  barriers  between  countries,  via  multinational  consortia  and 
coordination  of  national  funding  programmes;  enforces  cooperation  between  different  types 
large  companies, 
of  organisations:  universities,  research  centres,  hospitals,  SMEs, 
foundations,  or  patients'  organisations.  With  its  increased  focus  on  translating  basic 
discoveries  into  clinical  applications  (translational  research),  it  also  promotes  cooperation 
between  scientific  disciplines,  bringing  together  researchers,  engineers,  clinicians  and 
industrialists. 

3.5.2.3.  Boundary Test (Proportionality) 

Alzheimer's disease and other dementias are not appropriate fields for either self-regulation or 
Community harmonisation; this would not be a viable solution for resolution of the problems 
identified,  which  cannot  be  effectively  addressed  by  independent  operators  but  which 
precisely require a collective approach also involving public authorities. 

Community  action  should  not  interfere  in  the  national  or  regional  organisation  of  health 
services or medical care, which is the responsibility of Member States. Rather, action should 
focus  on  improving  the  knowledge  and  tools  available  to  Member  States  in  addressing  this 
challenge, of which they can then make the appropriate use within their national and regional 
context.  This  is  reflected  in  the  options  taken  for  this  impact  assessment,  and  described  in 
more detail in the assessment of each below. 

4. 

OBJECTIVES 

In support of the Health Strategy and in particular to help ensure healthy ageing throughout 
the EU, the objective of Community action is to assist the Member States more efficient and 
effective  prevention,  early  intervention,  treatment,  care  and  understanding  of  Alzheimer’s 
disease and other dementias. 

This is then broken down through the specific and operational objectives set out below. 

4.1. 

Specific objective: Acting early to promote well-being in old age 

Operational objectives: 

–  Promoting  good  physical  and  mental  health  (e.g.  promoting  a  healthy  cardiovascular 
system,  encouraging  education  and  learning  throughout  life)  in  order  to  help  avoid 
cognitive decline. Half of all cases of dementias have a vascular component, thus control 
of vascular risk factors can also help prevent the development of dementia.37 

–  Identifying  and  promoting  best  practice  in  early  diagnosis  of  Alzheimer’s  disease  and 
dementia, in order to make best use of available interventions at the most effective early 
stages. 

37 

Alzheimer Europe (2008) Dementia in Europe Yearbook 

EN 

16 

   EN 

 
                                                 
–  Through  these  strategies  to  improve  prevention,  and  early  diagnosis  and  intervention 
delaying  the  progression  of  Alzheimer’s  disease,  it  is  possible  to  prevent—or  at  least 
delay—progression  of  the  disease,  with  benefits  for  individuals,  families  and  social 
protection systems overall. 

4.2. 

Specific  objective:  Better  understanding  of  Alzheimer’s  disease  and  dementia 
through a shared European effort 

Operational objectives: 

–  Supporting targeted research on key problems related to Alzheimer’s disease at European 
level;  develop  Alzheimer’s  as  a  pilot  of  Joint  Programming  of  public  research  in  the 
Member States in order to make best use of available resources. 

–  Further developing current accurate comparable epidemiological data as a reference point 
to  assess  the  impact  of  these  conditions  and  enabling  monitoring  of  responses  (data 
collection,  potential  additional  monitoring  of  mental  health  and  social  networking).  The 
EuroCoDe  recommendations  and  the  future  European  Health  Examination  Survey  could 
provide a solid basis for this. 

–  Promoting the sharing and pooling of knowledge and data at EU level to avoid duplication 

of efforts, thus increasing efficiency. 

–  Promoting  research  into  social  care  models  including  sharing  of  best  practices  in  the 
training of dementia caregivers. There is a broad consensus that patient care should not be 
limited  to  pharmacological  treatment  but  should  also  include  non-pharmacological 
approaches, and these need further research to be applied effectively. 

4.3. 

Specific objective: Supporting national solidarity with regard to dementias 

Operational objectives: 

–  Mapping  and  describing  better  the  existing  and  emerging  good  practices  related  to 
treatment  and  care  for  persons  suffering  from  Alzheimer's  disease  and  other  forms  of 
dementia  and  improving  the  dissemination  of  such  practices.  This  should  also  include 
supporting  more  widely  the  development  of  new  good  practices,  where  needed,  by 
spreading  information  on  how  European  Community  programmes  can  help  finance  such 
developments in Member States. 

–  Supporting  the  development  of  concepts  and  solutions  on  a  macro  level,  when  needed, 
both at national and European levels and developing quality frameworks for medical and 
social care services for people with dementias. 

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

organisations. 

4.4. 

Specific objective: Respecting the rights of people with dementias 

Operational objectives: 

–  Political  leadership  for  the  EU  in  recognising  the  mental  capital  of  older  adults  and 
reducing  the  stigma  associated  Alzheimer’s  disease  and  other  dementias,  for  example 
through anti-discrimination and employment of older adults. 

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

abuse. 

EN 

17 

   EN 

 
5. 

POLICY OPTIONS 

This  section  presents  four  policy  options  in  tackling  the  issues  of  Alzheimer’s  disease  and 
dementia described. The initial “baseline option” assumes that no further action is taken, other 
than  those  actions  currently  in  progress.  Each  subsequent  option  described  below  builds  on 
the  actions  of  the  previous  option  in  a  cumulative  manner  (e.g.  the  Communication  option 
includes the actions outlined under the Report option, with the additional actions described). 

5.1. 

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 Programme.38 

Current projects and proposals under the Framework Programme for research would continue. 
Moreover,  actions  in  the  individual  Member  States,  such  as  research  and  establishment  of 
national  plans,  would  continue.  This  would  probably  include  development  of  the 
knowledgebase as well as an improvement of early diagnosis in countries with comprehensive 
strategies;  however,  in  MS  with  no  political  commitment  and  awareness  of  the  dementia 
challenge will see little progress. 

5.2. 

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; 

•  Participation in international fora to disseminate the data. 

As for the baseline option, current projects and proposals under the Framework Programme 
for research would continue, as well as actions in the individual Member States. There would 
still be reduced progress in MS with no political commitment and awareness of the dementia 
challenge. 

5.3. 

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 
associated  with  Alzheimer's  disease  and  other  dementias  within  the  EU,  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.  Although  an 
the  Council  Recommendation  on  Joint  Programming  and  a 
independent 
Commission  Communication  on  Alzheimer’s  Disease  and  dementia  would  strongly 
complement each other in furthering development, coherence and coordination in the field of 
research both at the national and EU levels. The Joint Programming would thus make research 

initiative, 

38 

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

EN 

18 

   EN 

 
                                                 
efforts  far  more  efficient,  unlocking  untapped  potential  without  requiring  new  sources  of 
funding. Furthermore, joint adoption would provide coherent political support to policy in this 
field. 

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 in 
the field of Alzheimer’s disease and dementia financed under the Health Programme. 
Joint actions are activities carried out by the Community and one or more Member States.39 In 
this case a specific Joint Action in the field of Alzheimer’s disease will be funded through the 
Health Programme up to 50% (and in cases of exceptional utility, 70%), and will be included 
in the Call for Proposals by the Executive Agency for Health and Consumers. 

The  continued  collection  of  consensual  and  comparable  prevalence  rates  for  dementia  in 
Europe  as  would  be  achieved  in  the  report  option  would  be  more  complete  and  accurate 
following  improvements  in  early  diagnosis.  In  addition,  actions  that  could  be  included  in  a 
Joint  Action  are  the  establishment  of  a  European  network  for  cooperation  on  the  issues 
described above, such as: 

•  exchange of best practices on early diagnosis procedures and intervention; 

•  exchange  of  best  practices  on  standards  of  care,  training  for  caregivers,  and  financing  of 

long-term care;  

•  discussion of the rights of people with dementia who should formulate recommendations 
on  dignity,  autonomy,  social  inclusion,  and  the  legal  guardianship  of  Alzheimer’s  and 
dementia patients. 

5.4. 

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. 

This  formal  programme  and  European  action  plan  would  also  be  adopted  jointly  with,  and 
complemented  by,  a  DG  Research  proposal  for  a  Council  Recommendation  for  Joint 
Programming  of  research  in  the  field  neurodegenerative  disease,  including  Alzheimer’s 
disease. 

In the context of this option being the next cumulative step, it would include the scope of the 
actions  detailed  in  the  previous  two  policy  options.  However,  whereas  the  Communication 
would achieve the objectives through the voluntary opt-in to a Joint Action, the establishment 
of  an  action  plan  would  require  a  commitment  for  Member  States  to  participate.  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. 

39 

Executive Agency for Health and Consumers: http://ec.europa.eu/eahc/health/actions.html 

EN 

19 

   EN 

 
                                                 
6. 

ANALYSIS OF IMPACT 

Given  the  non-binding  character  of  almost  all  the  proposed  actions  and  also,  given  that 
EU-level  research  spending  represents  only  a  minor  share  of  overall  public  and  private 
spending, the significance of the following assessment exercise can therefore only be limited.  

The  main  three  options  have  been  assessed  qualitatively  in  terms  of  scope,  political 
acceptance, EU contribution, and Member States’ commitment, as there is a significant lack 
of quantitative data as regards the impacts of policy actions targeted to improve dementia and 
Alzheimer’s care. 

The impact of the proposed Council Recommendation for Joint Programming of research in 
the field neurodegenerative disease, including Alzheimer’s disease and dementia has not been 
included in this impact assessment, as this initiative will undergo its own impact assessment 
process lead by the Directorate-General for Research. 

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 
dignity,  and  help  combat  stigmatisation.  Furthermore,  any 
that  promotes 
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. 

6.1. 

Baseline Option – No new EU action 

6.1.1.  Current economic and societal burden of Alzheimer in Europe  

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 care.40 

In  high-income  countries  (with  a  gross  national  income  per  capita  of  US$10 066  or  more), 
9.4%  of  the  total  disability-adjusted  life  years  (DALYs)  for  persons  aged  over  60  are 
attributable to Alzheimer’s disease and dementia. In comparison, it is only 4.8% for muscular-
skeletal  disorders,  and  3.7%  for  diabetes  mellitus.8  Alzheimer’s  disease  and  dementia  is, 
already  today,  the  fourth  leading  cause  of  burden  of  disease  (DALYs)  in  high-income 
countries, 
ischæmic  heart  disease,  and 
cerebrovascular disease.  

following  unipolar  depressive  disorders, 

As  a  result  of  inaction,  there  will  be  no  immediate  burden  on  public  authorities  at  different 
levels  of  government  (national,  regional,  local),  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.  

40 

Alzheimer Europe (2008) Dementia in Europe Yearbook 2008 

EN 

20 

   EN 

 
                                                 
Some Member States will continue to develop national plans and  strategies; however,  these 
will  be  independently  established  with  coordination  at  EU-level  through  the  Mental  Health 
Pact strand on ageing. 

6.2. 

Report taking forward the work of the EuroCoDe project 

6.2.1. 

Social Impacts 

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. 

It  would  have  the  possible  impact  of  prompting  some  minor  changes  within  the  Member 
States in terms of accessibility to care, albeit without any coordination at EU level. Without 
the political support of the Commission, it is unlikely that Alzheimer’s disease and dementia 
would be a priority. 

Such  an  option  may  lack  full  effectiveness  in  tackling  the  inequities  across  the  Union 
regarding  best  practice  in  primary  prevention,  a  fundamental  path  to  avoid  an  escalating 
growth of the disease resulting from ageing population. 

A report would not affect the social protection of the patients and of the informal caregivers. 

6.2.2.  Economic Impacts 

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). 

Such an action would not carry any direct cost or administrative burden for public authorities 
at  different  levels  of  government  (national,  regional,  local)  in  the  short  term.  However,  it 
would carry direct and indirect costs in the long term for national health systems owing to the 
deterioration  of  health  and  social  welfare  losses  due  to  the  illness.  There  would  also  be  an 
‘opportunity cost’ from the inefficiencies of fragmented actions and duplication of effort, as 
highlighted in the baseline option. 

A  report  policy  option  would  not  stimulate  Alzheimer's  research,  and  continuing  individual 
actions risk being inefficient and fragmented within Member States, who will not always be 
aware of what is being done in the different areas at Community level. 

A  report  would  not  affect  the  economic  and  legal  protection  of  the  patients  and  of  the 
informal caregivers. 

6.3. 

Communication 

6.3.1. 

Social Impacts 

The options that are under consideration are for technical cooperation, non-binding "soft" law 
and European-level cooperation, not harmonisation or binding legal measures. The initiative 
would  also  have  a  non-binding  nature  and  the  likely  impacts  are  not  expected  to  be 
burdensome to any group or sector. 

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.  

EN 

21 

   EN 

 
Such an action could contribute to reducing the inequity gap of healthcare service provision 
and best practice in primary prevention.  

Early intervention has been shown to have positive effects on the quality of life of people with 
dementia (Banerjee et al., 2007) and their family carers (Mittleman et al., 2007). 

A formal statement of intent in a Communication would prepare the ground for future actions 
on social protection of the patients and of the informal caregivers. 

6.3.2.  Economic Impacts 

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.  

The dissemination of the information would be greatly facilitated with a minimal incremental 
increase in costs, as it would take advantage of already established web portals and networks. 

There  may  well  be  some  direct  cost  and  administrative  burden  for  public  authorities  at 
different levels of government (national, regional, and local) in the short term as they attempt 
to  implement  recommendations  resulting  from  associated  projects  of  the  initiative,  and 
through voluntary participation in joint actions. 

Direct and indirect cost could be reduced in the long run for national health systems resulting 
from  reduction  of  health  and  social  welfare  losses  due  to  the  prevention  of  illness  and 
delaying  the  high-cost  institutionalization  (and  terminal  long-term  care)  of  Alzheimer’s  and 
dementia patients. Analysis suggests that only a modest increase in average quality of life of 
people with dementia, plus a 10% diversion of people with dementia from residential care, is 
needed to be cost-effective.41 If it were possible to delay the onset of Alzheimer’s disease by 
five  years  it  would  decrease  its  prevalence  by  50%,42  and  gain  of  between  0.01  and  0.02 
quality-adjusted  life  years  (QALYs)43  per  person  year,  achieved  through  the  provision  of 
better  care,  has  been  shown  in  the  United  Kingdom  to  be  sufficient  to  render  action  cost-
effective.44  These  relatively  small  improvements  seem  very  likely  to  be  achievable  with 
cooperation at European level. 

Through  earlier  diagnosis  and  intervention  in  Alzheimer's  disease  and  dementia  can  delay 
late-stage  progression  of  the  diseases  and  thus  delay  institutionalization.  The  ‘opportunity 
cost’  from  the  inefficiencies  of  fragmented  actions  and  duplication  of  effort  would  also  be 
reduced. 

A Communication would stimulate research and development through permitting cooperation 
in  the  different  areas  of  research  and  expertise,  which  would  lead  to  a  greater  global 
knowledge  and  better  identification  of  Alzheimer’s,  effectively  centralising  knowledge  and 
avoiding duplication within the Union. 

41 
42 
43 

44 

Department of Health of the United Kingdom (2008) Consultation on a National Dementia Strategy 
Alzheimer Europe (2008) Dementia in Europe Yearbook 
The quality-adjusted life year (QALY) is a measure of disease burden, including both the quality and 
the quantity of life lived. It can be taken as a proxy for Healthy Life Years (HLYs) in this case. 
Banerjee  &  Wittenberg  (2009)  International  Journal  of  Geriatric  Psychiatry:  Clinical  and  cost 
effectiveness of services for early diagnosis and intervention in dementia 

EN 

22 

   EN 

 
                                                 
Future actions on economic and legal protection of the patients and of the informal caregivers 
could  be  encouraged  through  establishing  Alzheimer’s  disease  as  a  priority  in  Europe  by 
raising political awareness in the Member States through a Commission Communication. 

6.4. 

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. 

6.4.1. 

Social Impacts 

An  action  plan  would  provide  detailed  guidance  at  Community  level,  which  would  set  out 
general principles that are then adapted to the circumstances of each health system. 

A proposal for a European action plan would have the direct impact of seeking to bring about 
change  to  reduce  current  fragmentation  and  inequalities  in  this  area.  In  addition,  this  would 
also have an impact on the formulation of European policy in this area. 

Proposing  such  a  comprehensive  strategy  specifically  for  Alzheimer’s  disease  and  related 
conditions needs to take place in the context of a fuller commitment to the “broad promotion 
of life-long mental capital,” which is a currently established EU-level Public Health priority. 
Emphasis on this broader context is essential, as 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. 

6.4.2.  Economic Impacts 

Although  the  technical  work  will  be  taken  forward  with  support  from  the  existing  health 
programme,  there  could  be  additional  cost,  for  example,  if  it  were  decided  to  integrate  data 
collection on Alzheimer's disease and other dementias into the European statistical system. 

A  substantial  level  of  funding  above  the  status  quo  might  be  required  from  EU,  and  a  new 
budget line might need to be established. EU-level funding from the Directorate-General for 
Research (DG RTD) cannot exceed certain levels, as other health research priorities have to 
be supported, according to the content of the FP7 Cooperation Specific Programme. EU-level 
DG RTD funding is also constrained in terms of duration, since the FP7 ends in 2013. 

As for the Communication option, the direct and indirect cost could be reduced in the long run 
for national health systems resulting from reduction of health and social welfare losses due to 
the  prevention  of  illness  and  delaying  the  high-cost  institutionalization  (and  terminal  long-
term care) of Alzheimer’s and dementia patients. 

A  comprehensive  action  plan  would  require  a  clear  consensus  that  this  was  consistent  with 
subsidiarity, given the differences in organisation and delivery of health services and medical 
care  throughout  the  Union.  However,  this  is  in  fact  true  for  all  the  options  for  action,  to  a 
greater or lesser extent. A big initiative, if agreed, would stimulate research and development 
through permitting cooperation in the different areas of research and expertise, which would 
lead  to  a  greater  global  knowledge  and  better  identification  of  Alzheimer's,  effectively 
centralising knowledge and avoiding duplication within the Union. 

A  synoptic  overview  of  the  different  policy  options  and  the  extent  to  which  they  could 
achieve the identified specific objectives is presented in the following table. 

Baseline 
Option 

Report 

Commission 
Communication 

Formal 
Programme  & 
Action Plan 

EN 

23 

   EN 

 
 
Specific Objective 1 

early 

Acting 
to 
promote  well-being 
in old age 

Specific Objective 2 

Better 
understanding 
of 
Alzheimer’s  disease 
and 
dementia 
through  a  shared 
European effort 

Specific Objective 3 

Supporting  national 
solidarity 
with 
regard to dementias 

Specific Objective 4 

Respecting 
rights 
with dementias 

the 
of  people 

additional 
No 
EU-level 
support 
resulting in little or 
no shared European 
effort. 

Current 
and 
under 
Framework 
Programme 
research 
continue. 

projects 
proposals 
the 

for 
would 

in 

Actions 
the 
individual  Member 
States 
would 
continue,  however 
with  little  progress 
in  those  MS  where 
AD 
low 
has 
political priority. 

Although 
recommendations 
best 
and 
some 
practices 
exist, 
these  will  not  be 
shared. 

of 
accurate 

Further 
development 
current 
comparable 
epidemiological 
data. 

Little  support  for 
this objective. 

Recommendations 
for  good  physical 
and  mental  health 
will  be  promoted 
and best practices in 
early  diagnosis  and 
intervention  will  be 
shared. 

of 
accurate 

Further 
development 
current 
comparable 
epidemiological 
Would 
data. 
promote 
research 
and  the  sharing  of 
knowledge 
at 
EU-level 

Would 
promote 
sharing  of  good 
practices  related  to 
treatment  and  care, 
and  empower  AD 
associations. 

Although 
recommendations 
best 
and 
some 
practices 
exist, 
these  will  not  be 
shared. 

of 

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

Establishment of an 
action  plan  would 
the  same 
achieve 
objectives 
a 
as 
Commission 
Communication but 
through  requiring  a 
commitment 
for 
Member  States  to 
participate.  

the 

The  establishment 
formal 
of 
programme  would 
enable  a  greater 
degree  of  funding 
to  be  available  to 
the 
achieve 
objectives 
a 
more 
comprehensive 
manner. 

in 

7. 

COMPARING THE OPTIONS 

The options can be assessed qualitatively on the basis of their contribution at EU level, their 
scope,  to  what  degree  they  meet  political  expectations,  and  the  subsidiarity  dimension.  The 
table below compares the proposed options based on these criteria. 

Option 

EU 
Contribution 
& Efficiency 

Scope 

& Effectiveness 

Political 
Acceptance & 
Coherence 

Proportionality & 

Member 
Commitment 

State 

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 
in 
funding,  however  would  be  very 
effective 
current 
inefficiencies. 

maintain 

an 

This  option  does 
the 
not  meet 
expectations 
of 
Member 
the 
States 
as 
expressed 
the 
through 
Council  or 
the 
Parliament at all. 

no 

Although  there  would 
additional 
be 
commitment 
required 
of  the  MS,  this  option 
would not contribute to 
tackling  any  of 
the 
problems  no  achieve 
any  of  the  objectives 
outlined  in  this  impact 
assessment. 

Report 

A 
report  would 
provide  up-to-date 

This option requires 
through 
support 

This 
option 
would  not  meet 

There  would  be  no 
commitment 
formal 

EN 

24 

   EN 

 
 
EU-level 
data 
comparable 
on  the  prevalence 
and 
incidence  of 
Alzheimer’s 
and 
disease 
dementia. 
MS 
action  alone  could 
provide 
this 
information, 
however  without 
guaranteeing 
comparability. 

such 

A  Communication 
would 
support 
coordinated  efforts 
across  the  EU  in 
as 
areas 
sharing  of  best 
and 
practice 
This 
research. 
increase 
would 
and 
efficiencies 
the 
provide 
support 
political 
for 
more 
a 
coherent  approach 
to AD. 

Communication 

funding  of  another 
to 
project  similar 
the 
successful 
EuroCoDe  project. 
Funding  would  be 
through 
achieved 
the  current  Health 
Programme.  Other 
Framework 
Programme and MS 
would 
actions 
continue. 

in 

the  expectations 
the 
outlined 
Council 
or 
Conclusions 
the 
Written 
Declaration of the 
Parliament, 
which  calls  for  a 
more 
comprehensive 
approach  in  the 
field  of  AD  and 
dementia. 

necessary  from  the  MS 
as this option would be 
entirely  funded  through 
the  Health  Programme. 
However,  this option  is 
the 
pass 
not 
proportionality  test,  as 
it  would 
be 
sufficient  to  meet  the 
objectives outlined. 

not 

a 

of 
for 

option 
joint 
a 
a 

This 
includes 
adoption 
proposal 
Council 
Recommendation 
Joint 
on 
Programming 
of 
research in the field 
of  AD.  Cooperative 
actions  in  the  MS 
could  be  supported 
Joint 
through 
funded 
Action 
through  the  Health 
Programme. 

a 

in 

the 

This 
option 
would  essentially 
meet the four key 
objectives 
outlined 
Council 
Conclusions 
as 
well  as  clearly 
establishing 
Alzheimer’s 
and 
disease 
dementia 
a 
political priority. 

as 

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 4. 

Action Plan 

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

additional 
As 
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. 
it 
However, 
clearly 
would 
the 
meet 
expectations 
of 
the 
Parliament 
and Council. 

Given the differences in 
and 
organisation 
delivery 
health 
of 
services  and  medical 
care throughout the EU, 
this  option  would  raise 
subsidiarity  issues.  As 
the 
in 
objectives 
Section  4  could  be 
met 
substantially 
through  a  less  formally 
binding 
it 
would  need  to  be  clear 
that  the  additional  cost 
and 
harmonisation 
involved  in  this  option 
was  proportionate 
to 
the additional benefits. 

initiative, 

Furthermore, the four options can be assessed on their relative advantages and disadvantages, 
as presented in the successive tables below. 

Baseline Option 

Advantages 

Disadvantages 

EN 

25 

   EN 

 
This would not require any additional funding  

It would not require additional commitment from the MS 

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 option does not meet the expectations of the Member 
States as expressed through the Council or the Parliament. 

It would not contribute to tackling any of the problems nor 
achieve  any  of  the  objectives  outlined  in  this  impact 
assessment. 

Report Option 

Advantages 

Disadvantages 

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. 

Other  Framework  Programme  and  MS  actions  would 
continue. 

This  option  requires  support  through  funding  of  another 
project similar to the successful EuroCoDe project. 

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. 

It would not contribute to tackling any of the problems nor 
achieve  any  of  the  objectives  outlined  in  this  impact 
assessment. 

Commission Communication 

Advantages 

Disadvantages 

Actions  proposed  would  support  coordinated  efforts 
across  the  EU,  such  as  sharing  of  best  practice  and 
research. This would increase efficiencies. 

The potential scope of added-value would be limited to the 
Member  States  that  choose  to  participate  in  the  Joint 
Programming or Joint Action. 

It would provide the political support for a more coherent 
approach to Alzheimer’s disease and dementia. 

This  option  would  provide  a  framework  for  the  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. 

This action would provide some flexibility to MS willing 
to act in the area of AD 

Formal Programme and European Action Plan 

EN 

26 

   EN 

 
 
 
 
Advantages 

Disadvantages 

An  action  plan  would  address 
objectives as a Communication, but with stronger tools. 

the  same  EU-level 

It  would  provide  the  mandate  for  a  more  coherent 
approach  to  Alzheimer’s  disease  and  dementia  also 
involving action by Member States, not just the EU. 

In addition, it would provide the financial support to MS, 
though a single detailed and funded strategy. 

It  would  clearly  meet  the  expectations  of  the  Parliament 
and Council. 

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. 

This action would provide less flexibility to MS willing to 
act  in  the  area  of  Alzheimer’s  disease  and  dementia,  and 
would  raise  issues  of  subsidiarity  and  lack  of  respect  for 
the  responsibilities  of  the  Member  States  for  their  health 
systems. 

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,  tackling  the 
problems defined through focussed actions to achieve the objectives identified in Section 4. A 
Commission  Communication  would  be  we  proportionate  to  the  objectives  without 
overstepping the principles of subsidiarity as in Option 4, whereas the first two options would 
fail to meet many of the objectives identified. 

8. 

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. Such indicators could include: 

•  To  develop  indicators  for  monitoring  prevalence,  incidence,  and  risk  factors  on  a 
comparable basis between the Member States; these indicators could be incorporated into 
the  European  Community  Health  Indicators  (ECHI),  Healthcare  Quality  Indicators 
(HCQI), and the Social Protection Indicators (SPI). 

•  Responsibility  for  monitoring  these  indicators  will  be  with  the  European  Union  Health 

Information Committee (HIC). 

•  To  monitor  the  coverage  and  content  of  strategies  or  plans  established  by  the  Member 

States on dementias. 

•  This  will  be  monitored  through  actions  in  the  planned  Joint  Action  funded  through  the 

Health Programme. 

•  An increase in coordination between Member States within the DG Research Programme, 
for which a specific committee is proposed in the proposal for a Council Recommendation. 

•  An  increase  in  EU-level  DG  Research  funding  on  neurodegenerative  diseases,  including 

Alzheimer’s disease, within the 7th Framework Programme (FP7). 

EN 

27 

   EN 

 
 
 
9. 

9.1. 

ANNEXES 

Communication from the Commission to the European Parliament, the Council, 
the  European  Economic  and  Social  Committee  and  the  Committee  of  the 
Regions Towards Joint Programming in Research COM(2008) 468 final 

9.2.  Minutes of the meeting of the Impact Assessment Steering Group – 13 March, 

2009 

9.3.  Minutes of the joint meeting of the Impact Assessment Steering Group and the 

European Union Panel of Experts on Alzheimer’s Disease – 17 March, 2009 

9.4.  Minutes of the meeting of the Impact Assessment Steering Group – 23 March, 

2009 

9.5. 

Opinion of the Impact Assessment Board 

EN 

28 

   EN