EN    EN EN 
 
EN    EN  COMMISSION OF THE E UROPEAN COMMUNITIES 
Brussels, 22.7.2009 
SEC(2009) 1040 final 
  
COMMISSION STAFF WORKING DOCUMENT 
Accompanying the 
 
COMMUNICATION FROM THE CO MMISSION TO THE EUROPEAN 
PARLIAMENT AND TO THE COUNCIL  
 
on a European initiative on Alzh eimer's disease and other dementias 
Impact Assessment  
{COM(2009) 380 final} 
{SEC(2009) 1041}
 
EN 2   EN COMMISSION STAFF WORKING DOCUMENT 
Accompanying the 
 
COMMUNICATION FROM THE CO MMISSION TO THE EUROPEAN 
PARLIAMENT AND TO THE COUNCIL  
 
on a European initiative on Alzh eimer's disease and other dementias 
Impact Assessment  
 
1. E XECUTIVE SUMMARY  
There are currently over six million people with dementia in the European Union; the most 
common form of dementia is Alzheimer’s di sease accounting for a bout 70% of dementia 
cases. It is predicted that this number of deme ntia 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 de mentia 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 deve lopment 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 Alzhei mer’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 Presiden cy, and the Written Declaration of 
the European Parliament on the priorities in the fight against Alzheimer’s disease. 
Based on tackling these problems through specifi c 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 achi eve 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 3   EN 2. P ROCEDURAL ISSUES AND CONSULTATION OF INTERESTED PARTIES  
2.1. Identification 
The Lead Directorate-General for this initiativ e is the Directorate-General for Health and 
Consumers (DG SANCO). 
Associated Directorates-General are the Direct orates-General for Employment, Social Affairs 
and Equal Opportunities (DG EMPL), Resear ch (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 no mination was made. The Impact Assessment 
Steering Group first met on 13 March, with subs equent 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. 
2.3. Consultation and Expertise 
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 focu ses 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 Ol der People, and (v) Combating Stigma and 
Social Exclusion. Within the context of the pr iority on Mental Health in Older People, a 
collaborative effort involving re searchers, policy makers and stakeholders from across the EU 
established a consensus paper4 providing an analysis of tr ends 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 Marc h, 17 March, and 23 
March, 2009. The comments received from these two meetings and the contributions from the other services have been inco rporated into this impact assessment as comprehensively as 
possible. The minutes of these three meeti ngs can be found in the 9. Annexes (Section 
9), but the discussions essentia lly focussed on the clarificat ion and restructuring of the 
problem definition, and elaboration and confirmation of the objectives. 
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 http://ec.europa.eu/atwork/programmes/docs/clwp2009_roadmap_priority_initiatives_en.pdf 
3 http://ec.europa.eu/health/ph_determinants/life_style/mental/docs/pact_en.pdf 
4 http://ec.europa.eu/health/ph_determinants/life_style/mental/docs/consensus_older_en.pdf 
 
EN 4   EN Project. The Panel was convened to advise a nd assist the Commission on identifying actions 
on best practices for prevention, treatment, pr otection, 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 imp act analysis and options considered by the 
Commission, whilst also providing  many references and data th at 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 Eur opean level, and to reinforce 
the impact analysis of Community action in th is area. Their comments have been taken into 
account in this impact assessmen t, in particular through in cluding 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 th e United Nations Convention on the Rights of 
Persons with Disabilities. 
– Under Current Action (Section 3.3), reference ha s been made to the EU Disability Action 
Plan and the anticipated Communica tion on Reducing Health Inequalities . 
– In the policy options, there is further clarification of the co mplementarity of the proposed 
Council Recommendation for Joint Progra mming of research in the field 
neurodegenerative disease, including Al zheimer’s disease and dementia with a 
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 b een clearly identified. 
– The data needs have been cl arified. The Monitoring and Evaluation (Section 8) has been 
expanded. 
– A separate Executive Summary has also been prepared. 
3. C
ONTEXT AND PROBLEM DEFINITION  
Dementias are neurodegenerative diseases that  have varying ætiologies: neurodegenerative 
vascular causes, following e.g. atherosclerosi s and stroke; toxic ca uses, following, e.g. 
chronic alcohol abuses; and metabolic/inflammato ry 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 Eu ropean 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 so cietal implications, Synthesis and recommendations. 
Collective expert report from INSERM (French Nati onal Institute for health and medical research), 
2007. 
 
EN 5   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 recollectio n 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 th e patient, the consequent ial 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 pers ons 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 d ecreasing ratio of working to 
retired populations. The suffering of millions of i ndividuals and their families, as well as the 
costs to the European healthcare systems, are dr amatic. 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 challe nge ahead and of the necessity to support 
research on Alzheimer disease and on neurodege nerative 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 Europe an 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. 
3.2. Economic Burden of Alzhei mer’s disease and Dementias 
There are currently over six million people with dementia in the European Union
6 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) ar e 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 th at dementia, of which Alzheimer 
is currently the most common form, will featur e among the main challenges for healthcare 
systems in the upcoming decades. 
                                                 
6 Alzheimer Europe (2006) Dementia in Europe Yearbook 2006 
7 Ferri et al.  (2005) The Lancet 366: 2112-2117 
8 http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf 
 
EN 6   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 –  0,16 % –  0,09 % 
– 60-64 –  1,58 % –  0,47 % 
– 65-69 –  2,17 % –  1,10 % 
– 70-74 –  4,61 % –  3,86 % 
– 75-79 –  5,04 % –  6,67 % 
– 80-84 –  12,12 % –  13,50 % 
– 85-89 –  18,45 % –  22,76 % 
– 90-94 –  32,10 % –  32,25 % 
– 95-99 –  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 co mmon challenge to all Member States; figures 
for dementia prevalence in the EU represent roughly a similar proporti on of the population in 
all Member States. Furthermore, with the ag eing 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-euro pe.eu/?lm2=OWQAUJKRXAEZ 
 
EN 7   EN Source: Eurostat, EUROPOP2 008 convergence scenario. 
Dementias pose particular challenges to the wa y health care is provided nowadays: Dementia 
patients need coordinated care a nd today's healthcare systems, wh ich 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 addi tional strains on the 
healthcare budgets of ageing soci eties, in particular if hea lthcare 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 disabili ties, favour formal care provis ion at home rather than in 
institutions or, more generally, improve the co st-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 strategi es 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 Englis h 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 cost s 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 Stat es are currently considering simila r action, such as Italy and Spain. 
However, there are also Member States of the European Union wher e Alzheimer and other 
dementia have not been given special attenti on yet – despite the fact that all EU Member 
States are expected to have similarly hi gh percentages and growth rates of elderly. 
At the EU level, the following actio ns 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 Alzheimer Europe (2008) Dementia in Europe Yearbook 2008 
11 http://www.premier-min istre.gouv.fr/IMG/pdf/plan_2008_2012.pdf 
12 http://www.regjeringen.no/upload/HOD/D okumenter%20KTA/DementiaPlan2015.pdf 
13
 http://www.dh.gov.uk/en/socialcare/deliveringa dultsocialcare/olderpeople/nationaldementiastra
tegy/index.htm 
14 http://www.scotland.gov.uk/Topics/Health/health /mental-health/servicespolicy/DFMH/dementia 
15 http://ec.europa.eu/health/ph_projects/2005/action1/action1_2005_10_en.htm  
 
EN 8   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 th e 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 pr otection systems on the basis of policy exchanges 
and mutual learning. Within the OMC, Member  States identify comm on challenges and agree 
common objectives
16 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 facilitati ng 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 progr ammes. The exchange can take place in 
peer-reviews, with a limited number of partic ipants 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 Alzheime r's disease and other 
dementias. In addition, the Commission services  is considering to arrange in mid-2010 an 
additional conference, whose sp ecific 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. Effort s 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 citizen s’. 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 re search methods and generating the necessary 
scientific basis to underpin informed policy de cisions on health systems and more effective 
                                                
 
16 http://ec.europa.eu/employment_social/spsi/common_objectives_en.htm 
17 http://ec.europa.eu/employment_social/spsi/strategy_reports_en.htm 
18 http://eur-lex.europa.eu/LexUriServ/LexU riServ.do?uri=COM:2009:0058:FIN:EN:PDF 
 
EN 9   EN and efficient evidence-based strategies of hea lth promotion, disease prevention, diagnosis, and 
therapy. It will reinforce health policy driven research at the Eu ropean 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 comm itted 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 jo int 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 a nd the long term care of the elderly resulting 
from the second call – ANCIEN, INTERLI NKS and SHELTER. These are focussing on 
different aspects within the organisation, pr ovision, and quality of long term care of the 
elderly in Europe. The overall budget for th ese projects is €8 million. Furthermore, other 
topics in the second call were al so relevant to the ag eing research agenda, such as continuity 
of care, disease management programmes, h ealth outcome measures and population ageing, 
trends of population health, and a road-map for research. In th e third Health call published in 
September 2008, a topic on "organisation of deme ntia care" was include d and as a result, 
there is likely to be one funded project in the near future. Anot her relevant topic in the call 
focuses on ageing cohorts, for which there is likel y to be one funded project in the near future. 
Results of research projects f unded under the third pill ar 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 encour aged, to strengthen research 
into dementias and development of medici nal products. An example of action is the  
Innovative Medicines Initiative
19 (IMI) that aims to suppor t the faster discovery and 
development of better medicines for patients and enhance Europe’s competitiveness by ensuring that its biopharmaceutical sector re mains a dynamic high-technology sector. The IMI 
platform was launched under the 6th Framew ork 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 Programming
22 (COM(2008) 468 final), 
adopted on 15 July 2008, presen ted a mechanism whereby Member  States engage voluntarily 
in a common research agenda. By enhancin g cooperation among those that develop and 
                                                 
19 http://imi.europa.eu/index_en.html 
20 P. Sobocki et al (2006) Resource allocation to brain research in Europe; Eur. J Neurol 24: 1-24. 
21 http://eadc.alzheimer-europe.org/introduction.html 
22 http://ec.europa.eu/research/press/2008/pdf/com_2008_468_en.pdf 
 
EN 10   EN manage research programmes, it aims to increase  the efficiency and im pact of national public 
research funding in strategic areas. Resear ch on Alzheimer’s disease is specifically 
mentioned. 
In April 2009, the Directorates -General for Employment and Social Affairs (EMPL) and 
Economic and Financial Affairs (E CFIN) 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 incr easing public spending on long-term care. In  order to address 
these challenges, the Communication will pro pose actions in three key fields: pensions, 
healthcare, and long-term care; financial services and taxati on; and education, training, and 
research and development. 
Enabling people with disabilities to enj oy 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 init iative on “Solidarity in 
Health”. One aim of this Communi cation is to support Member Stat es’ actions to tackle health 
inequalities, notably by highligh ting possible ways to prevent a nd address health  inequalities, 
by encouraging greater policy coordination and best-practice exchange and through financial 
support via the Structural Funds a nd other EU funding instruments. 
3.4. Problem Definition  
Considering the work and achievements of prev ious and current actions in the field of 
Alzheimer’s disease, and given th e importance of dementia diseas es in develope d 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 peopl e aged over 65 are more worried about 
developing dementia (39%) than cancer (2 1%), 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 leve l, in four key areas. These key areas are 
identified and explai ned in this section. 
Mental Capital and Well-Being, Di agnosis, and Early Intervention 
Although there is evidence that a healthy lifest yle 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 impr oving diagnosis will 
mean that a greater proportion of  people with dementia benefit from health and social care, 
early diagnosis  can ensure that interventions take place when they are most effective, 
delaying the progression of the disease and offering the potential to minimise the total cost 
of care for individual patients. Di agnosis 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 no rmal ageing process. At the final stages of 
                                                 
23 http://eur-lex.europa.eu/LexUriServ/L exUriServ.do?uri=COM:2007:0738:FIN:EN:PDF  
24 Alzheimer’s Society (2008) Dementia: Out of the Shadows 
25 Alzheimer Europe (2008) Dementia in Europe Yearbook 
 
EN 11   EN cognitive and behavioural degeneration, it is difficult to find, from examination, specific 
marks of a disease. Ma ny criteria for the diagnosis of Al zheimer's disease have been put 
forward, chief among these are the ICD-10 (W orld 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 ma y live with their demen tia 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 aforementi oned 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 di agnose 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 id entifying 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 ro le 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 e fficacy of models of care for Alzheimer’s and 
dementia patients including the care of the fr ail and elderly. In particular, the effects of 
behavioural and psychological symptoms of de mentia (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 sessi ons), but further research is needed to make 
best use of these approaches.28 
There is a lack of updated epidem iological information  on the prevalence and incidence of 
Alzheimer’s disease and dementias to help direct research and action and plan healthcare and social care provision in the future. Due to und er-diagnosis of Alzheime r’s disease in the EU, 
the magnitude of the problem is unclear becau se figures of prevalence are based only on 
diagnosed cases. 
                                                
 
26 National Audit Office (2007) Improving services and support for people with dementia 
27 Balestreri et al. (2000) International Psychogeriatrics 12: 59–62. 
28 Deudon et al. (2009) Int J Geriatr Psychiatry 24: 1–10. 
 
EN 12   EN 
29 
The graph above shows the size of research pub lic 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 Sc ience & Technology fields. Dementia and 
Alzheimer’s research score very poorly for all of these different criter ia (the smallest bubble 
at the bottom left hand corner):  public funding, coordination of re search efforts at European 
level, and the relative size of Europ ean public funding compared to the US. 
3.4.2. Solidarity, Treatment, Care and Financing 
Although there are good practices emergi ng across the EU with regard to diagnosis, 
treatment, care, and financing  of responses to th ese conditions, these are not being shared 
sufficiently throughout the Union. There is both a need for be tter descriptions of more 
existing and emerging good practices, as well as improving the dissemination of the information and strengthening specific exch ange and dialogue about such practices and 
experiences. 
An Alzheimer Europe survey and other studie s 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 an d there is huge variat ion 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 refo rm agenda. There seems to be 
room for exchange of best pr actice on how physical a nd technical infrastruc ture can best be 
adapted to the needs of dementia patients. To  give just one exampl e: although early provision 
of support at home can decrea se 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 infrastr ucture through cohesion 
spending. 
An inventory of dementia guidelines across Eur ope 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 Commission Communication on Joint Programming COM(2008) 468 final 
30 Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) The Gerontologist  45:177-185 
 
EN 13   EN regarding the service provision for dementia pa tients. Occasionally, there was even evidence 
of disparity within countries. Similarly, th e 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 pr otection for people with neurod egenerative conditions and their 
families, there are needs not only to spread and develop good practices, but also to develop 
concepts and solutions on a macro level, both nationally and at European level.  
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 st rong 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 situa tion of patients suffering from Alzheimer's disease and other 
dementias. Article 25 stipulates , “the Union recognises and respec ts the rights of the elderly to 
lead a life of dignity and independence and to pa rticipate in social and cultural life.” Article 
26 “recognises and respects the right of persons with disabilities to be nefit from measures 
designed to ensure their independence, social an d occupational integration and participation in 
the life of the community.”  Finally, Article 35 states, “ever yone has the righ t of access to 
preventive health care and the right to bene fit 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 implementa tion of all Union policies and activities.” 
The United Nations Convention on the Ri ghts of Persons with Disabilities32 states in 
Article 1 that: 
“The purpose of the present C onvention 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 resp ect for their inherent dignity. 
Persons with disabilities include thos e 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 havi ng “long-term mental 
impairments” and thus have their rights to non-discrimination and re spect 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, exclusi on, lack of recognition of  the mental capital 
of older people, stigma associated with dementia , and the complicated cross-border issue of 
the legal rights of mental guardians. These provi de 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 http://eur-lex.europa.eu/LexUriServ/LexUri Serv.do?uri=OJ:C:2000:364:0001:0022:EN:PDF 
32 http://www.un.org/disabilities/docum ents/convention/c onvoptprot-e.pdf 
 
EN 14   EN dementia on their loved ones; however, maintaini ng social contact helps to preserve autonomy 
and physical and mental well-being for longe r, reducing the need for assistance and 
preventing social isolation and depression.34 
3.5. Rationale for European Action 
The policy challenge of tackling Alzheimer ha s 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 en sure 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 we ll 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 chal lenge of dementias. 
Nevertheless, as set out in Article 152 of the Treaty, the Community shall complement 
national policies, encourage c ooperation between the Member St ates, and lend support to their 
action. There is substan tial potential for Community added-va lue in addressing the specific 
problems set out above in order to help ensure  effective and efficien t recognition, prevention, 
diagnosis, treatment, care, and research for Al zheimer's diseases and other dementias in 
Europe. 
As set out in Article 165 of the Treaty, the Community a nd the Member States shall 
coordinate their research and technological de velopment activities to ensure that national 
policies and Community policy are mutually consistent. In close cooperation with the 
Member States, the Commission may take any us eful initiative to promote coordination. The 
Competitiveness Council on 26 September 2008, id entified Alzheimer’s disease as a good area 
for testing innovative ways of pool ing national expertise and reso urces on a voluntary basis, and 
invited Member States, with the help of the Commission, to explore proposals to establish 
closer and robust Member States collaborati ons in this respect. The December 2008 
Competitiveness Council c onfirmed the necessity of launch ing 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 th e problem. It asks whet her 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 proportiona te to the objectives (the ' boundary test '). 
3.5.2.1. Necessity Test A Commission initiative in the fiel d of Alzheimer’s disease reflect s the need to respond to the 
priority attached to European action on this  issue by the Member States, as shown by the 
                                                                                                                                                        
 
33 Alzheimer’s Society (2008) Dementia: Out of the Shadows 
34 Alzheimer Europe (2008) Dementia in Europe Yearbook 
 
EN 15   EN Council Conclusions35 adopted under the French Presidency on 16 December, 2008. The 
Conclusions call on the Commission to a dopt an initiative in 2009 focussed on: 
(i) Research; (ii) Prevention and diagnosis; (iii) Epidemiological informati on on prevalence and incidence; 
(iv) The ethical dimension of the disease. 
The Written Declaration of the European Parliament
36 (0080/2008) calls on the Commission, 
Council, and governments of the Member St ates to develop an action plan to: 
(i) Promote research into æ tiology, 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 Eur opean level can play an important  role in awareness-raising and 
would encourage MS to set Alzheimer as a political priority, in particular in the context of an 
ageing society and the future costs it will incur. 
A DG RTD proposal for a Council Recommendation for Joint Programming of research in the 
field of neurodegenerative diseases, including Al zheimer’s disease, is planned for adoption at 
the same time; this timing provides us with a valuable opportunity to coordinate further EU-
level activities in this area. 
Moreover, effective planning and response to th is substantial issue cannot be sufficiently 
achieved by Member States acting individually, as it depends on comparable data about the 
projected burden of the disease, availabil ity of professional carers and impact on public 
finances across the EU as a whole. There is th erefore a need for comparable data, which can 
only be collected at EU level, to allow for pl anning and adaptation of h ealth services at the 
Member State level, and to manage the substan tial 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 di sease 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 ha s established, and th e 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 ac tion, the progress achieved by 
the project could well be lost.  
3.5.2.2. Added-Value Test Through coordination of national and European re search activities and other actions enabling 
greater exchange of best practice and c ooperation, Community action would help make 
efficient use of the limited resources and av ailable funding programmes in the European 
Union. In particular, the EU is well placed to c oordinate cross-border research efforts in the 
                                                
 
35 http://www.consilium.europa.eu/ueDocs/cms _Data/docs/pressData/en/lsa/104778.pdf 
36 http://www.europarl.europa.eu/sides/getDoc.d o?pubRef=-//EP//NONSG ML+WDECL+P6-DCL-2008-
0080+0+DOC+PDF+V0//EN&language=EN 
 
EN 16   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 re sulting increase in efficiency of care would 
support future financial sustainability of nati onal healthcare systems faced with an ageing 
society. Given the large sums involved for Member States, even a small additional 
improvement through European cooperation woul d add substantial value in real terms. 
In addition, the main added-va lue of collaborative health research at Community level is 
obtained from trans-national cooperation, the integration of rele vant 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; en forces cooperation between different types 
of organisations: universitie s, research centres, hospitals, SMEs, large companies, 
foundations, or patients' organisations. With  its increased focus on translating basic 
discoveries into clinical applications (translati onal 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 a ppropriate fields for eith er self-regulation or 
Community harmonisation; this wo uld not be a viable solution for resolution of the problems 
identified, which cannot be effectively a ddressed by independent operators but which 
precisely require a collective approa ch also involving public authorities. 
Community action should not interfere in the national or regional or ganisation of health 
services or medical care, which is the responsibility  of Member States. Rather, action should 
focus on improving the knowledge a nd tools available to Member States in addressing this 
challenge, of which they can then make the a ppropriate use within th eir national and regional 
context. This is reflected in the options take n for this impact assessment, and described in 
more detail in the assessment of each below. 
4. O BJECTIVES  
In support of the Health Strate gy 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, ea rly intervention, treatm ent, care and understanding of Alzheimer’s 
disease and other dementias. 
This is then broken down through the specifi c and operational objectiv es 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 a ll 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 Al zheimer’s disease and 
dementia, in order to make best use of availa ble interventions at the most effective early 
stages. 
                                                 
37 Alzheimer Europe (2008) Dementia in Europe Yearbook 
 
EN 17   EN – Through these strategies to improve prevention, and early diagnosis and intervention 
delaying the progression of Alzheimer’s diseas e, it is possible to prevent—or at least 
delay—progression of the disease, with bene fits 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 re lated 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 th ese conditions and enabling m onitoring 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 leve l to avoid duplication 
of efforts, thus increasing efficiency. 
– Promoting research into social care models including sharing of be st practices in the 
training of dementia caregivers. There is a broa d consensus that patient care should not be 
limited to pharmacological treatment but should also include non-pharmacological approaches, and these need further re search to be applied effectively. 
4.3. Specific objective: Supporting national  solidarity with regard to dementias 
Operational objectives: 
– Mapping and describing better the existin g and emerging good pract ices 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 Comm unity 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 de veloping quality framew orks for medical and 
social care services for people with dementias. 
– Empowering national and international Alzheime r’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 recognisi ng 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 right s of vulnerable adults and tackling patient 
abuse. 
 
EN 18   EN 5. P OLICY 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 opt ion, 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 th e EuroCoDe project has now finished, this work 
will now stop and will not be taken further ex cept through calls for proposal within the scope 
of the current Health Programme.38 
Current projects and proposals under the Framework Programme for research would continue. 
Moreover, actions in the indivi dual Member States, such as research and establishment of 
national plans, would continue. This wo uld probably include development of the 
knowledgebase as well as an improvement of ear ly diagnosis in countr ies 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 pub lication of the Dementia in 
Europe Yearbooks, published by Alzheimer Eur ope. A new project or operational grant 
funded through the Health Programme would suppor t this initiative in taking forward the 
work of the completed EuroCoDe project. 
Policy actions under this op tion would be limited to: 
• Continued collection of consensual and comp arable prevalence rates for dementia in 
Europe; 
• Participation in international fora to disseminate the data. 
As for the baseline option, current projects  and proposals under th e Framework Programme 
for research would continue, as well as actions in the individu al Member States. There would 
still be reduced progress in MS with no politic al 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 Jo int Programming of research in the field 
neurodegenerative disease, including Alzh eimer’s disease and dementia. Although an 
independent initiative, the Council R ecommendation on Joint Programming and a 
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. Th e Joint Programming would thus make research 
                                                 
38 http://ec.europa.eu/health/ph_programme/pgm2008_2013_en.htm 
 
EN 19   EN efforts far more efficient, unlocking untappe d potential without requ iring new sources of 
funding. Furthermore, joint adoption would provide coherent political suppor t to policy in this 
field. 
Further actions would be supported within the scope of currently av ailable programmes and 
resources, in particular through the current Health Programme and the Framework Programme for Research and Technological De velopment. Cooperative actions between 
several Member States could be  achieved through voluntary part icipation in a Joint Action in 
the field of Alzheimer’s disease and deme ntia financed under the Health Programme. 
Joint actions are activities car ried out by the Community and one or more Member States.
39 In 
this case a specific Joint Acti on 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 co mparable 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 a ddition, 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 car e, training for caregivers, and financing of 
long-term care;  
• discussion of the rights of people with deme ntia who should formulate recommendations 
on dignity, autonomy, social inclusion, and th e legal guardianship of Alzheimer’s and 
dementia patients.  
5.4. Formal Programme and European action plan 
The establishment of a European action pl an would be supported by a specific new 
programme with additional f unding beyond existing allocations. This would provide a single 
detailed and funded strategy for Alzheimer's dis ease and other dementias at Community level, 
and would develop specific projects on Alzheime r's disease and other dementias in a similar 
way to the previous specific initiative on Alzh eimer's disease and other dementias used during 
the period 1996-1998. 
This formal programme and European action pl an 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 neurod egenerative disease, including Alzheimer’s 
disease. 
In the context of this option being the next cu mulative step, it would include the scope of the 
actions detailed in the previous two policy options. However, whereas the Communication 
would achieve the objec tives through the volunt ary opt-in to a Joint Ac tion, the establishment 
of an action plan would require a commitment  for Member States to participate. The 
establishment of the formal programme woul d enable a greater de gree 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 20   EN 6. A NALYSIS OF IMPACT  
Given the non-binding character of almost all the proposed ac tions and also, given that 
EU-level research spending re presents only a minor share of overall public and private 
spending, the significance of the following assess ment 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 pol icy actions targeted to improve dementia and 
Alzheimer’s care. 
The impact of the proposed Council Recommen dation for Joint Programming of research in 
the field neurodegenerative diseas e, including Alzheimer’s diseas e 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 th at improves the situation for Alzheimer’s and 
dementia patients will bring soci al benefits, such as improving e quity of access,  support their 
dignity, and help combat stig matisation. Furthermore, a ny initiative that promotes 
coordination and supports more efficient use of resources will bri ng economic benefits. 
Quantitative information given here is therefor e limited to the current economic and social 
burden of dementia, costs of action plans at nati onal level, expected dementia trends in the 
future, and finally evidence from policy interventions at national level. 
Environmental impact is negligible and will not be considered further. 
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 diseas e, the major contributor to dementia, is 
growing rapidly in Europe due to increasing lifespan and a decreasing ratio of working to 
retired populations. 
As already highlighted, the total direct and in formal 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 nati onal income per capita of US$10 066 or more), 
9.4% of the total disability-adjusted life years (DALYs) for pers ons aged over 60 are 
attributable to Alzheimer’s disease and demen tia. 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, following unipolar de pressive disorders, ischæmic heart disease, and 
cerebrovascular disease.  
As a result of inaction, there will be no immedi ate burden on public aut horities 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 pr ovision on long-term care 
in the Member States will in crease with the increasing burden of an ageing society, without 
the benefit of coordinated sharing of e xperience and best prac tice across the EU.  
                                                
 
40 Alzheimer Europe (2008) Dementia in Europe Yearbook 2008 
 
EN 21   EN Some Member States will continue to devel op national plans and strategies; however, these 
will be independently established with coordina tion 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 re garding Alzheimer's disease at European level 
and achieve thorough and up-to-date knowledge on the magnitude, prevalence, and incidence 
of the disease. 
It would have the possible impact of promp ting 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 unl ikely 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 soci al protection of the patients and of the informal caregivers. 
6.2.2. Economic Impacts 
The budgetary cost of analysis and repor ting would be covered through EU funding, 
possibility through the establishm ent of a similar action to the completed EuroCoDe project. 
The previous EuroCoDe project cost €1 423 190 (with €843 000 funded by the Commission through the Health Programme). 
Such an action would not carry any direct cost or administ rative burden for public authorities 
at different levels of government (national, re gional, 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 ineffi ciencies of fragmented actions and duplication of effort, as 
highlighted in the baseline option. 
A report policy option would not stimulate Alzheimer's researc h, and continuing individual 
actions risk being inefficient and fragmented w ithin 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 le gal protection of the patients and of the 
informal caregivers. 
6.3. Communication 
6.3.1. Social Impacts The options that are under cons ideration are for technical coop eration, non-binding "soft" law 
and European-level cooperation, not harmonisa tion or binding legal measures. The initiative 
would also have a non-binding nature and th e 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 re garding Alzheimer's diseas e at European level. 
Thorough knowledge on the magnitude, prevalence,  and incidence of the disease would be 
achieved. This would provide a solid basis fo r planning prevention, early intervention and 
health and social care provision.  
 
EN 22   EN Such an action could contribute to reducing the inequity gap of health care 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 Communicatio n 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 notabl y through the relevant st rands of the Mental 
Health Pact, would be subsidized by the EU through support from the existing Health 
Programme and Framework Programme for Res earch and Technological Development. By 
centralising efforts, this will be more effi cient and less burdensome for national health 
systems and public authorities.  
The dissemination of the information would be gr eatly facilitated with a minimal incremental 
increase in costs, as it would take advantage of already establ ished web portals and networks. 
There may well be some direct cost and ad ministrative burden for public authorities at 
different levels of government (nat ional, regional, and local) in the short term as they attempt 
to implement recommendations resulting from associated projects of the initiative, and 
through voluntary participat ion in joint actions. 
Direct and indirect cost could be reduced in the long run for na tional health systems resulting 
from reduction of health and social welfare losses due to the prevention of illness and delaying the high-cost institutionalization (and te rminal long-term care) of Alzheimer’s and 
dementia patients. Analysis suggests that only a modest increase in aver age quality of life of 
people with dementia, plus a 10% diversion of pe ople 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 decreas e its prevalence by 50%,42 and gain of be tween 0.01 and 0.02 
quality-adjusted life years ( QALYs)43 per person year, achieved through the provision of 
better care, has b een 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 inte rvention in Alzheimer's disease and dementia can delay 
late-stage progression of the diseases and thus delay instit utionalization. The ‘opportunity 
cost’ from the inefficiencies of fragmented ac tions 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 expe rtise, which would lead  to a greater global 
knowledge and better identifica tion of Alzheimer’s, effectiv ely centralising knowledge and 
avoiding duplication within the Union. 
                                                 
41 Department of Health of the United Kingdom (2008) Consultation on a National Dementia Strategy 
42 Alzheimer Europe (2008) Dementia in Europe Yearbook 
43 The quality-adjusted life year (QALY) is a measur e of disease burden, including both the quality and 
the quantity of life lived. It can be taken as a pr oxy for Healthy Life Year s (HLYs) in this case. 
44 Banerjee & Wittenberg (2009) International Journal of Geriatric Psychiatry: Clinical and cost 
effectiveness of services for early diagnosis and intervention in dementia 
 
EN 23   EN Future actions on economic and lega l protection of the patients and of the informal caregivers 
could be encouraged through establishing Alzhei mer’s disease as a priority in Europe by 
raising political awar eness 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 fragme ntation and inequalities in this  area. In addition, this would 
also have an impact on the formulati on of European policy in this area. 
Proposing such a comprehensive strategy specif ically 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,” whic h is a currently esta blished EU-level Pub lic 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 pr imarily on the causes of ill health, rather 
than attempting to have di sease-specific strategies. 
6.4.2. Economic Impacts 
Although the technical wo rk will be taken forward with support from the existing health 
programme, there could be additional cost, for ex ample, if it were decided to integrate data 
collection on Alzheimer's disease and other deme ntias 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-l evel funding from the Directorate-General for 
Research (DG RTD) cannot exceed cer tain 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 constr ained in terms of duration, since the FP7 ends in 2013. 
As for the Communication option, th e direct and indirect cost c ould 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 opti ons for action, to a 
greater or lesser extent. A big initiative, if agreed, would stimulate research and development through permitting cooperation in th e different areas of research  and expertise, which would 
lead to a greater global knowledge and better  identification of Alzheimer's, effectively 
centralising knowledge and avoidi ng duplication within the Union. 
A synoptic overview of the diffe rent policy options and the ex tent 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 24   EN Specific Objective 1 
Acting early to 
promote well-being 
in old age Although 
recommendations 
and some best practices exist, 
these will not be 
shared. Recommendations 
for good physical 
and mental health will be promoted 
and best practices in 
early diagnosis and intervention will be 
shared. 
Specific Objective 2 
Better 
understanding of 
Alzheimer’s disease 
and dementia 
through a shared 
European effort Further 
development of current accurate 
comparable 
epidemiological data. Further 
development of current accurate 
comparable 
epidemiological data. Would 
promote research 
and the sharing of knowledge at 
EU-level 
Specific Objective 3 
Supporting national 
solidarity with 
regard to dementias Little support for 
this objective. Would promote 
sharing of good 
practices related to 
treatment and care, and empower AD 
associations. 
Specific Objective 4 
Respecting the 
rights of people 
with dementias No additional 
EU-level support 
resulting in little or no shared European 
effort. 
Current projects 
and proposals 
under the 
Framework Programme for 
research would 
continue. 
Actions in the 
individual Member 
States would continue, however 
with little progress 
in those MS where AD has low 
political priority. 
Although 
recommendations and some best 
practices exist, 
these will not be shared. Sharing of best 
practice on respecting the rights 
of vulnerable adults 
and tackling patient abuse. Establishment of an 
action plan would 
achieve the same objectives as a 
Commission 
Communication but through requiring 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. 
7. C OMPARING THE OPTIONS  
The options can be assessed qualitatively on the ba sis of their contributi on at EU level, their 
scope, to what degree they meet political expe ctations, 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 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 inefficiencies. This option does 
not meet the 
expectations of 
the Member States as 
expressed 
through the Council or the 
Parliament at all. Although there would 
be no additional 
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 
support through This option 
would not meet There would be no 
formal commitment 
 
EN 25   EN 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. 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. 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. necessary from the MS 
as this option would be 
entirely funded through the Health Programme. 
However, this option is 
not pass the proportionality test, as 
it would not be 
sufficient to meet the objectives outlined. 
Communication A Communication 
would support 
coordinated efforts across the EU in 
areas such as 
sharing of best practice and 
research. This 
would increase 
efficiencies and 
provide the political support 
for a more 
coherent approach to AD. This option 
includes a joint 
adoption of a proposal for a 
Council 
Recommendation on Joint 
Programming of 
research in the field 
of AD. Cooperative 
actions in the MS could be supported 
through a Joint 
Action funded through the Health 
Programme. This option 
would essentially 
meet the four key objectives 
outlined in the 
Council Conclusions as 
well as clearly 
establishing 
Alzheimer’s 
disease and dementia as a 
political priority. The actions would be 
legally non-binding and 
any Joint Programming or Joint Action would 
involve voluntary 
participation of the MS. This action would also 
be proportionate to the 
objectives described in 
Section 4. 
Action Plan An action plan would achieve the same 
EU-level objectives as a Communication whilst providing a single detailed and 
funded strategy. As additional 
funding beyond existing 
allocations would 
be required, this would make this 
option less 
feasible within the current 
financial 
perspectives, and 
would take longer 
to put in place. However, it 
would clearly 
meet the expectations of 
the Parliament 
and Council. Given the differences in 
organisation and delivery of health 
services and medical 
care throughout the EU, this option would raise 
subsidiarity issues. As 
the objectives in Section 4 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. 
Furthermore, the four options can be assessed on  their relative advantag es and disadvantages, 
as presented in the successive tables below. 
Baseline Option 
Advantages Disadvantages 
 
EN 26   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. 
There would be no formal commitment necessary from 
the MS as this option would be entirely funded through 
the Health Programme. This option requires support through funding of another 
project similar to the su ccessful 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. 
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. 
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 The potential scope of added-value would be limited to the 
Member States that choose to participate in the Joint Programming or Joint Action. 
 
Formal Programme and European Action Plan 
 
EN 27   EN Advantages Disadvantages 
An action plan would addr ess the same EU-level 
objectives as a Communication, but with stronger tools. 
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 achie ve the objectives identified in Section 4. A 
Commission Communication woul d 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. M ONITORING AND EVALUATION  
This initiative does not require the collection of ne w statistical data, but it rather addresses the 
problem of incompatible and incomplete so urces of data, and focuses on developing a 
methodology on how to use existing data in a coherent manner. A data set for core progress 
indicators for the key objectiv es will be established based on the ongoing works of the 
initiative. Such indicators could include: 
• To develop indicators for monitoring prev alence, 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 Pr otection Indicators (SPI). 
• Responsibility for monitoring these indicators  will be with the European Union Health 
Information Committee (HIC). 
• To monitor the coverage and content of stra tegies 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 fundi ng on neurodegenerativ e diseases, including 
Alzheimer’s disease, within the 7th Framework Programme (FP7). 
 
EN 28   EN 9. A NNEXES  
9.1. 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 St eering 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