Major and chronic diseases

Introduction

Dementia is a decline in mental ability that usually progresses slowly, in which memory, thinking, and judgement are impaired, and personality may deteriorate. It usually develops slowly, and affects mainly those aged over 60. It is one of the most important causes of disability in the elderly; with the increasing proportion of the elderly in many populations, the number of dementia patients will rise also. The most common causes of dementia in EU are Alzheimer's disease (about 50-70% of cases), the successive strokes which lead to multi-infarct dementia (about 30%); other causes are Pick's disease, Binswanger's diseases, Lewy-Body dementia and others.

The European Commission has supported and participated in the conference, organised by the French Presidency of the Council, entitled "The figth against Alzheimer's disease and related disorders pdf

", held in Paris on 30 and 31 October 2008, which gathered the stakeholders involved in the care of patients and in the support of carers and invited European political decision makers to fight together against these diseases, through a multidisciplinary approach, integrating scientific, health and social dimensions.

The Council adopted on December 2008 the Council Conclusions on public health strategies to combat neurodegenerative diseases associated with ageing and in particular Alzheimer's disease pdf

addressed to Member States and the Commission in order to recognise that these diseases constitute a priority for action in the context of the ageing of the EU's population, to take into account of the potential consequences of the increase of these diseases for the financial sustainability of health and social protection systems, to reflect together on existing quality criteria for the care of patients and the support of carers, to consider ways of developing them further and calling the Commission to adopt an initiative in 2009 to combat these diseases.

The Commission has adopted the 22nd July 2009 the Communication from the Commission COM(2009) 380/4 to the European Parliament and the Council on a European initiative on Alzheimer’s disease and other dementias pdf

(170 KB) . The EU would support national efforts in four key areas: prevention, including measures to promote mental well-being, and support early diagnosis, coordinating research across Europe, spreading best practice for treatment and care and developing a common approach to ethical questions – rights, autonomy, and dignity of people with dementia.

On 19th January 2011 the European Parliament adopted the European Parliament resolution of 19 January 2011 on a European initiative on Alzheimer's disease and other dementias (2010/2084(INI)) supporting the Commission Communication mentioned above. The EP call for dementia to be made an EU health priority and urge Member States to develop dedicated national plans and strategies (only seven EU countries currently have national strategies in place). These strategies should address the social and health consequences, as well as services and support for sufferers and their families.

In order to implement the Commission Communication mentionned above, the Health Programme selected for funding in 2010 the ALCOVE (Alzheimer Cooperative Valuation in Europe) Joint Action between European Member States which aims to improve knowledge on dementia and its consequences and to promote the exchange of information to preserve health, quality of life, autonomy and dignity of people living with dementia and their careers in European Union Member States. The joint action seeks to answer the following 4 key issues: (i) How to improve data for better knowledge about dementia prevalence? (ii) How to improve access to dementia diagnosis as early as possible? (iii) How to improve care for people living with dementia and particularly those with behavioural disorders? and (iv) How to improve the rights of people with dementia, particularly in respect to advance declarations of will ?

The Commission also provides funding for research addressing neurodegenerative diseases and in particular Alzheimer's disease through the 7th Framework Programme for Research and Technological Development (FP7, 2007-2013). Overall, more than EUR 639 million € has been made available to support 33 large-scale and 120 small-scale brain research projects in the period 2002-09. Research relevant to the brain and the nervous system is also addressed in other areas of the current ‘Health’ theme, where an additional 49 research projects received funding for about EUR 247 million €. Joint Programming initiative on neurodegenerative diseases in particular Alzheimer's disease. This initiative brings together 23 European countries.

Additional funding for Alzheimer research is provided through the Innovative Medicines Initiative, jointly funded by the European Union and the European pharmaceutical industry association EFPIA, in particular the PharmaCOG (Prediction of Cognitive Properties of new drug candidates for Neurodegenerative Diseases in early clinical development) project pdf .

To know more about Alzheimer prevalence

Data on the prevalence on Alzheimer's disease and other dementias are available across the EU collected by Alzheimer Europe. However, these estimates must be treated with caution, as the type of source varies considerably in scale and accuracy by M ember State. An estimated 7.3 million Europeans (in 27 Member States) between 30 and 99 years of age suffered from different types of dementias in 2006 (14.6 per 1 000 inhabitants). Within this group, more women (4.9 million) than men (2.4 million) were affected.

See table Estimated number of people with dementia - Alzheimer Europe pdf

(17 KB)

Although dementia does not only affect older people, the likelihood of developing dementia nevertheless increases with age. Thanks to the work of the European Community Concerted Action on the Epidemiology and Prevention of Dementia group EURODEM (not available in electronic version); it is possible to estimate how many people in a given country are likely to have dementia provided that accurate population statistics are available. EURODEM pooled data on the prevalence of moderate to severe dementia in several European countries to produce a set of prevalence rates for men and women in nine different age groups (30-59, 60-64, 65-69, 70-74, 75-79, 80-84, 85-89, 90-94 and 95-99). The study included people with dementia who were living at home as well as those in institutions, nursing homes and residential care. Although dementia does not only affect older people, the likelihood of developing dementia nevertheless increases with age. Thanks to the work of EURODEM, it is possible to estimate how many people in a given country are likely to have dementia provided that accurate population statistics are available. In the course of their work, members of the above-mentioned group pooled data on the prevalence of moderate to severe dementia in several European countries and came up with a set of prevalence rates for men and women in 9 different age groups.

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 %

The EuroCoDe (European Collaboration on Dementia) Project examined the EURODEM data taking into account the high quality studies performed in the last 20 years looking at dementia prevalence and pooled these in a collaborative analysis. Age and sex specific prevalence rates have been calculated using this prevalence data. Inclusion criteria for involvement in the collaborative analysis were decided by the members of the EuroCoDe prevalence working group. These were developed by consensual opinion looking at all methodological domains of this type of epidemiological study. Age (by 5 year age group from 50 to >95years) and sex specific raw prevalence case numbers and underlying population were collected from all groups agreeing to participate in the collaborative analysis.

See Report of the Working Group on Prevalence of Dementia in Europe from EUROCODE (European Collaboration on Dementia) Project pdf

(306 KB)

Age Range	Male	Female	Total population
60-64	0.2	0.9	0.6
65-69	1.8	1.4	1.6
70-74	3.2	3.8	3.5
75-79	7.0	7.6	7.4
80-84	14.5	16.4	15.7
85-89	20.9	28.5	26.2
90-94	29.2	44.4	41.0
>95	32.4	48.8	46.3

The OECD paper Dementia Care in 9 OECD Countries: A Comparative Analysis pdf

provides a comparative analysis of dementia care in 9 countries, with a particular focus on Alzheimer's disease. Defining the boundary between health and social care, or indeed whether such a boundary should be delineated. In all countries, prevalence of dementia taken from 36 studies increased almost exponentially with age, up to the most advanced ages. When data were pooled by continent, i.e. North America, Europe and Asia, prevalence showed very similar figures up to 85 years (very low under the age of 60 years; 0.5% in the age group 60-64 years; 1.5% in the age group 65-69; 3% in the age group 70-74; 6% in the age group 75-79; 12% in the age group 80-84). AD was the leading cause of dementia in all countries. AD accounted for 74.5% of all dementia cases in North America, 61.4% in Europe and 46.5% in Asia. Prevalence rates of AD increase with the inclusion of mild cases of dementia (73% of the studies). The inclusion of institutionalised patients (67%) had no effect in the figures. Prevalence is determined both by incidence and disease duration. The influence of health care system and/or general health conditions on AD survival may vary between developed countries but is difficult to assess.

EU public health actions on Alzheimer and other dementias

In 1997 and 1998, the European Commission approved a budgetary line for the implementation of measures to help persons suffering from dementia and Alzheimer's disease and for those assisting them on a non professional basis. Several projects were launched in areas as: Diagnosis and therapeutic, Maintenance such as drug treatment to minimise common co-morbidities associated with dementia (e.g., depression), Control distressing symptom, Information and support to caregivers, Ongoing support and counselling, End of life support and counselling in relation to 'palliative care, Intermittent assistance with Activities of Daily Living (ADLs) or Instrumental Activities of Daily Living (IADLs), and full support to all ADLs and IADLs.

See EU Projects Initiatives related to Alzheimer and other dementias in the EC (1997-1998)

There was also a project on the framework of the former EU Action Plan on Rare diseases on Rare forms of dementia. The objective of the project was to build up a database of information about rare forms of dementia and to make this available to the general public by means of the existing Internet and Intranet systems of Alzheimer Europe. A new classification system pdf

(178 KB) for these forms of dementia has been created.

See EU Project Rare Forms of Dementia Project

In relation to the direct support to NGO's acting in the field of health care to AD affected persons and his families, the organisation and the support to activities in the home and residential care (as well as it occurs for the primary care and the hospital care) is under the responsibility of the Member States.

However the Public Health Programme permits to the NGO's to apply for funds in several areas. The only condition is a large EU Networking of the submitted proposals. Priority areas in dementia are those related to risk factors, risk reduction strategies, cost of illness, social support, to develop a healthy brain lifestyle, eHealth activities and supporting the exchange of information and experiences on good practice. The organisations should be able to reduce the differences in quality standards through increased cooperation and by exchanging knowledge and experience about the content and organisation of care. A European consensus is lacking on an integrated package of care services for dementia patients. The suggestion that the problems of undercapacity in the care of dementia patients could be solved by offering more support to family carers must be rejected categorically.

See EUROCODE (European Collaboration on Dementia) Project

The Health Programme selected for funding in 2010 the ALCOVE (Alzheimer Cooperative Valuation in Europe) Joint Action between European Member States which aims to improve knowledge on dementia and its consequences and to promote the exchange of information to preserve health, quality of life, autonomy and dignity of people living with dementia and their careers in European Union Member States. The joint action seeks to answer the following 4 key issues: (i) How to improve data for better knowledge about dementia prevalence? (ii) How to improve access to dementia diagnosis as early as possible? (iii) How to improve care for people living with dementia and particularly those with behavioural disorders? and (iv) How to improve the rights of people with dementia, particularly in respect to advance declarations of will ?

See ALCOVE (Alzheimer Cooperative Valuation in Europe) Joint Action – European Commission

The EUROCODE (European Collaboration on Dementia) Project

Aging societies bring many challenges and the impact of neurodegenerative diseases and dementia in old age is an important field of study. The EuroCoDe project (European Collaboration on Dementia), coordinated by Alzheimer Europe, was therefore selected for funding in 2005.

The project covers

• Alzheimer’s disease
• vascular dementia
• dementia in Parkinson’s disease
• dementia with Lewy bodies
• mild cognitive impairment
• frontotemporal dementia
• treatment of all severities of alcohol-related dementia
• prevention of alcohol-related dementia and mild cognitive impairment.

Reversible dementias are excluded.

Project partners are currently carrying out a meta-analysis of existing prevalence studies throughout Europe, including the new member countries, to produce consensual prevalence rates for dementia. A database of all European epidemiological studies in this field to-date will be compiled, classified by research methodology, disease type, age range, date, geographical location, etc. This work will be carried out in collaboration with a group of European experts and is expected to be finished by the end of 2008.

The EuroCoDe project is developing:

(1) Consensual prevalence rates

Existing epidemiological studies will be studied, and their respective merits and shortcomings examined. Consensual European prevalence rates will be defined, to be acceptable to all partners and used as a "golden standard" within the respective organisations. The project will produce a breakdown between various forms of dementia (Alzheimer’s disease, vascular dementia, Lewy-body dementia, frontotemporal dementias and other, rarer forms of dementia), as well as between the different stages of the disease (mild, moderate and severe stages).

(2) Guidelines on diagnosis and treatment

The aim of the project is to identify existing guidelines and establish areas in which they agree or differ. The resulting comparative report will be used to develop consensual guidelines acceptable to the various networks and project partners.

(3) Guidelines on non-pharmacological interventions

Studies into the effects and usefulness of various interventions will be examined in a comparative report. The project will elaborate consensual guidelines on non-pharmacological interventions based on the findings.

(4) Risk factors and risk reduction / prevention strategies

Existing studies on risk factors for Alzheimer's disease and other forms of dementia will be examined in a comparative report highlighting promising areas for the development of prevention strategies. to The project will develop recommendations for national Alzheimer associations to use in conjunction with "healthy brain lifestyle" campaigns.

(5) Socio-economic cost of Alzheimer’s disease

Existing studies on the socio-economic impact of dementia in Europe will be examined in a comparative report, taking account of economic differences between different EU countries.

(6) Inventory of social support systems

Project partners will carry out a survey on the level of support currently available to people with dementia and their carers in the 27 EU countries and prospective new member countries, covering:

• different treatment reimbursement systems,
• carers' allowances and benefits,
• care insurance systems,
• employment related benefits (such as carers’ leave, flexible working time, pension systems)
• other benefits.

The findings will be presented in a comparative report and discussed with other network and project partners to identify best practices.

A new website dedicated to making dementia a public health priority has been launched by Alzheimer Europe to publicise the results of the EuroCoDe project and the Alzheimer Europe campaign. Information on the prevalence of dementia and the reimbursement of anti-dementia drugs is published on the website.

See Dementia in Europe Yearbook 2008 - Alzheimer Europe with the support of the European Collaboration on Dementia - EuroCoDe Project- 2008 pdf (5 MB)
See Dementia in Europe Yearbook 2007 - Alzheimer Europe with the support of the European Collaboration on Dementia - EuroCoDe Project- 2007 pdf (1009 KB)
See Dementia in Europe Yearbook 2006 - Alzheimer Europe with the support of the “European Collaboration on Dementia - EuroCoDe Project- 2006 pdf (5 MB)

The 'Dementia carer's survey'

A survey of more than 1 100 dementia carers from five European countries was conducted to investigate the state of dementia care, how carers cope with looking after someone with dementia, and the services available to them.

The findings (in a report on the state of dementia care in Europe) reveal that half the carers spend at least 10 hours a day looking after their loved one, feel they received inadequate information at diagnosis, and want more information on drug treatments. Four out of five want more information on help and support services – only two out of five were informed about the existence of an Alzheimer's association. Perhaps of greatest concern is that more than half have no access to services such as home care, day care or residential/nursing home care, and when these services are available, many carers have to pay themselves. Overall, only 17% of carers consider that the level of care for the elderly in their country is good.

Research on Alzheimer's disease in FP6 and FP7

The Competitiveness Council adopted on September 2008 'Council Conclusions on a common commitment by the Member States to combat neurodegenerative diseases, particularly Alzheimer's pdf ' recommending the launching of a European initiative bringing together Member States, the Commission and other stakeholders with a view not only to mobilising and maintaining available researchers in Europe but also to training sufficient numbers of new specialist in order to reduce the impact of the neurodegenerative diseases, particularly Alzheimer's.

Brain research is supported in the Seventh Framework Programme (FP7; 2007-2013), which includes an activity on ‘Research on the brain and related diseases’ under the theme ‘Health’. This activity has a particular emphasis on translational research, meaning translation of basic discoveries into clinical applications. In the first three FP7 calls, 30 projects were funded under this activity for a total of EUR 135 million. Research relevant to the brain and the nervous system is also addressed in other areas of the current ‘Health’ theme, where an additional 49 research projects received funding for about EUR 247 million. In the Sixth Framework Programme (FP6; 2002-2006), research on the brain and related diseases was supported through the Priority I - Life Sciences, in the area ‘Studying the brain and combating diseases of the nervous system’. About EUR 157 million has been invested for brain research projects and additional EUR 99 million were funded across other related areas. Projects funded cover basic to clinical research, including identification of genes and molecules playing a role in brain diseases, pathophysiology of diseases, as well as development of new therapies and diagnostic tools. Overall, more than EUR 639 million has been made available to support 33 large-scale and 120 small-scale brain research projects in the period 2002-09.

In the FP7 "Health" theme, a comprehensive approach have been developed to allow a better understanding of the pathophysiology of Alzheimer's Disease and the development of new diagnostic and therapeutic targets. Support for research on Alzheimer's Disease focuses in particular on: Study of genetic variations Molecular and biological mechanisms underlying memory loss, Development of new imaging probes and biomarkers for diagnostic, monitoring and prognosis, Brain plasticity, brain repair and development of restorative approaches for therapy, and Determination of ageing-related health characteristics and determinants.

See Brain research - European Commission

In addition, a major effort undertaken by the Member States to coordinate research on Alzheimer's Disease is currently implemented by the Joint Programming on Neurodegenerative Diseases, in particular Alzheimer's Disease (JPND). The JPND was the first Joint Programming initiative to be set up and comprises now 24 countries. The goal of JPND is to boost research on Alzheimer’s and other neurodegenerative diseases in order to accelerate progress in understanding the causes of these debilitating conditions, leading to early diagnosis, the development of new treatments and prevention and the provision of more effective medical and social care to improve the quality of life for patients and care givers. To achieve this goal, 24 European countries have decided to work together in an unprecedented collaborative initiative in research which is seeking to align their scientific competencies, medical strengths and social approaches to tackle the challenge.

See Joint Programming on Neurodegenerative Diseases, in particular Alzheimer's Disease (JPND)

Finally, research on neurodegenerative diseases, including Alzheimer's Disease, has also been addressed by the Innovative Medicines Joint Undertaking (IMI JU), a Public-Private Partnership, PharmaCog, between the Commission and the pharmaceutical industry represented by the European Federation of Pharmaceutical Industries and Associations (EFPIA). A total of about €20 million have been invested for research in this area, equally shared by the Commission and EFPIA, for the discovery of new tools to improve the efficacy of drugs against Alzheimer's Disease.

See PharmaCog (Prediction of cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development)

The European Commission launched in 2007 the Communication on Ageing Well in the Information Society of 14th June 2007 COM(2007) 332 final, with a number of concrete actions, including specific actions in the Information and Communication Technologies (ICT) part of the FP7, the launch of a joint research and innovation programme with 23 European countries on ICT products and services for ageing well, as well as a large scale pilot projects with regions under the Competitiveness and Innovation programme specifically addressing ICT solutions for elderly people with cognitive problems and mild dementia and as well as their carers.

National dementia strategies

Dementias is one of the emerging priorities of Health programmes at the national level but not too much Member States have adopted or are in process to adopt national plans.

Belgium
The regions (Flanders and Wallonia) each have a Dementia Plan, both adopted in 2010.

See Dementieplan Vlandereen 2010-2014 pdf
See Programme wallon d’actions Alzheimer et maladies apparentées

Denmark
In 2010 the four-year Action Plan for Dementia was launched and 4 million € were allocated.

See description of the National Handlingsplan for demensindsatsen - Denmark

France
France adopted the French national plan on dementia 2008-2012 last February 2008 with a funding of 1.6 billion euros over five years including 44 measures.

See Plan Alzheimer et maladies apparentées 2008-2012 pdf
See Documents et liens utiles par mesure

Germany
Early diagnosis of neurodegenerative diseases, including Alzheimer’s disease, has been defined in 2008 as one of the six priority areas of the German Federal Ministry of Education and Research (BMBF) . In addition, the German Helmholtz Centre for Neurodegenerative Diseases (DZNE) has been established in Bonn with an annual budget of € 50 million.

Norway
Norway adopted the Dementia Plan 2015 with five main strategies for meeting future care challenges.

See Dementia Plan 2015 pdf
See report up the experiences from adapted dementia day programmes from five municipalities in Norway (in Norwegian only).

Sweden
In Sweden, the Swedish Brain Power Network was launched in 2005 as a national collaboration between six different founders for a value of SEK 100 million over five years. It aims at improving early diagnosis, treatment and care of patients affected by neurodegenerative disorders.

United Kingdom
England adopted the National Dementia Strategy for England setting out 17 recommendations. The Strategy is backed by £150 million over the first two years.

See the National Dementia Strategy for England
See Improving services and support for people with dementia - National Audit Office report
See Transforming the Quality of Dementia Care - Consultation on a National Dementia Strategy – Department of Health
See Dementia UK Report pdf
Scotland has also adopted Dementia as a national priority.

Non-EC funded, international funding initiatives on Alzheimer's disease and other neurodegenerative diseases

See The International Consortium for Brain Mapping (ICBM)
ICBM was constituted in 1993 thanks to the support of the National Institute of Mental Health (USA). The primary goal of the ICBM project is to build and expand the tools available to establish a reference system for structural and functional anatomy of the human brain at both macroscopic (in vivo) and microscopic (post mortem) levels. The project has created neuroinformatics tools for data sharing that allow laboratories worldwide to contribute data to a constantly evolving brain atlas.

INTERDEM – Early detection and timely intervention in dementia
The purpose of this network is to promote, develop and carry out research on early detection and psychosocial intervention in dementia, to build capacity and to develop a better understanding of the experience of people with dementia and their families, throughout Europe. INTERDEM is a network of researchers, practitioners, people with dementia and their carers who have a particular focus on early and timely support, psychosocial intervention and disability prevention in dementia, at the primary / community - specialist care interface.

E-ADNI - The European Alzheimer’s disease Neuroimaging Initiative: a pilot study of the European Alzheimer’s Disease Consortium
The largest project on Alzheimer’s disease currently under way worldwide is the US-based ADNI - Alzheimer's Disease Neuroimaging Initiative, co-sponsored by the NIH and Industry. The Alzheimer’s disease Neuroimaging Initiative (ADNI) aims to collect imaging and biomarker data to track the progression of the disease, and to validate these markers for use in AD treatment trials testing the efficacy of disease-modifying drugs. In Europe, two related projects are currently under way. The Pilot European ADNI (E-ADNI) supported by the US-based Alzheimer's Association aims at testing the feasibility of the ADNI markers in 6 European centres. The ENIR – Foresight Study for the Development of a European NeuroImage Repository is supported by the European Commission and aims to design the infrastructure for centralized image collection.

Where to look for EU or other European dementia data or activities?

See Alzheimer: l'éthique en questions - Ministère de la Santé France (in French only) - 2007
See EU Projects Initiatives related to Alzheimer and other dementias in the EC (1997-1998)
See EU Project Rare Forms of Dementia Project
See Alzheimer Europe
See Dementia - Health Council of the Netherlands
See OECD paper Dementia Care in 9 OECD Countries: A Comparative Analysis pdf
See Alzheimer Disease International
See WHO report 'Neurological Disorders, public health challenges'
See Clinical and cost effectiveness of services for early diagnosis and intervention in dementia - International Journal of Geriatric Psychiatry pdf (131 KB)
See Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model - International Journal of Geriatric Psychiatry pdf (108 KB)
See Non-pharmacological management of behavioural symptoms in nursing homes - International Journal of Geriatric Psychiatry
See Dementia – Diagnostic and Therapeutic Interventions - A Systematic Review - The Swedish Council on Technology Assessment in Health Care pdf
See An estimate of the total worldwide societal costs of dementia in 2005 pdf
See Global prevalence of dementia: a Delphi consensus study –The Lancet
See Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: cluster randomised trial

European Commission Public Health

Alzheimer disease and other dementias