a problem shared is a problem halved? evidence report on dementia in europe

A problem shared is a problem halved?

An evidence report on dementia in EuropeAn evidence report on dementia in Europe

Sally-Marie Bamford

February 2010

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About the ILC-UK

The International Longevity Centre - UK (ILC-UK) is an independent, non-partisan think

tank dedicated to addressing issues of longevity, ageing and population change. It

develops ideas, undertakes research and creates a forum for debate.

The ILC-UK is a registered charity (no.1080496) incorporated with limited liability in

England and Wales (company no. 3798902).

This state of evidence report was first published in February 2010.

ILC-UK

This state of evidence report was first published in February 2010.

© ILC-UK 2010

Acknowledgements

This research has been made possible by an unrestricted grant from Pfizer Inc. We are

grateful for their continued support.

Contents

1. Introduction

2. Ageing Population and Conceptions in the EU

3. Prevalence and Conceptions of Mental Health in the EU

4. Definitions, Conceptions and Prevalence of Dementia in the EU

5. Impact of Dementia in the EU

Contents

5. Impact of Dementia in the EU

6. Dementia in EU Member States

7. European Union Current Actions on Dementia

8. Conclusion

Introduction

• This evidence report is intended to accompany the Policy Brief ‘A problem shared is a

problem halved? Learning Opportunities from Europe’. It should be read alongside

the policy brief, to provide contextual background and further details on the

arguments and discussions raised in the brief.

• This report is primarily focussed on dementia and ageing at the European Member

State level and at the EU level. It will look at, in turn: the ageing population and

conceptions in the EU, prevalence and conceptions of mental health in the EU,

definitions, conceptions and prevalence of dementia in the EU, the impact of

Introduction

definitions, conceptions and prevalence of dementia in the EU, the impact of

dementia in the EU, dementia in EU Member States and European Union current

actions on dementia.

Ageing Population and Conceptions in the EUA diverse group in an increasingly diverse Europe

• Ageing affects individuals and nations everywhere. But a precise definition of what

ageing is cannot be provided easily without regard to health aspects, social

conventions and lifestyles that are intertwined with the ageing process.

• A heterogeneous ageing population - people aged 50 years and above form a very

diverse group characterised by a range of factors, only one of which is their age.

• As the older population continues to expand, this diversity among its constituents will

Ageing

• As the older population continues to expand, this diversity among its constituents will

further increase. The use of chronological age is a poor proxy for determining

people’s health, wealth, social status, aspiration or capacity to be active on the labour

market.

• Alongside differences such as those linked to gender, health and wealth, one aspect

of this increased diversity is linked to the immigration of ethnic and national minorities

everywhere in Europe over successive generations who now form part of the EU’s

ageing populations.

Source: AGE (2007), ‘Towards a European Society for all ages’, AGE- The European Older People’s Platform

• Old Age “The old man does not know what is best for him…he cannot accommodate himselfto…the progress of civilization.” (IL Nashcher,19th Century)

•“Ageing is a progressive, generalised impairment of function resulting in an increasedprobability of death.” (John Maynard Smith)

Progressive conceptions of ageing

Ageing Population and Conceptions in the EUDespite variation across EU member states, policy-makers are developing more progressive conceptions of ageing

Ageing

probability of death.” (John Maynard Smith)

•Active ageing “is the process of optimizing opportunities for health, participation and securityin order to enhance quality of life as people age”. (WHO, 2002)

•Successful Ageing refers to the maintenance of physical and mental function, therebyensuring that individuals have the psychological and physical “reserves” necessary towithstand stressful experiences in later life. (Walters et al,1999)

•Healthy Ageing concerns “the process of optimizing opportunities for physical, social andmental health to enable older people to take an active part in society without discriminationand to enjoy an independent and good quality of life”. (SNIPH, 2007)

•Confusing array of images and views of older people co-exist within society, creating contradictions and inconsistencies in policy and practice.

•Often conceived narrowly as recipients of health and social care primarily as opposed to citizens in their own right.

Confused and regressive conceptions of ageing in society?

Ageing Population and Conceptions in the EUOutside the policy-making sphere, there remains wide cultural variations on attitudes towards the ageing population.

Ageing

in their own right.

•Negative and mainstream discourse on the growth of the ageing population encapsulated in pejorative phrases such as ‘demographic time bomb’ or ’rising tide’ have given rise to and engrained discriminatory and negative attitudes towards older people.

•Condescending and negative discourse on older people, particularly pervasive in the media and public parlance, has led to reductive conceptions of their identity based on the themes of ‘burden’,’dependency’ and ‘vulnerability’.

•Is there an irreconcilable dichotomy between ‘illderly’ and ‘wellderly, go-go pensioners and no-go pensioners (Townsend, 2004)? With two distinct conceptions of older people: the ‘successful agers’ that remain active, engaged and accorded equal status; and those others who are perceived solely or primarily as ‘dependent’, to be ‘managed’ or ‘looked after’ by services.

Source: Townsend,J.,Denby,T and Godfrey,M. (2004) Heroes, Villains and Victims, Older People’s Perceptions of Other Older People.

Conference Paper, British Society of Gerontologists and Institute of Health Sciences and Public Health Research and University of Bradford,

(2005) Preventionand Service Provision: Mental Health Problems in Later Life

Ageing Population and Conceptions in the EUUnder the projected birth rates, life expectancy and migration flows, the population of the present EU will be roughly the same in 2060 at about 500 million, but will be significantly older

The Facts The Drivers

•The number of elderly people will almost double, rising from 85 million in 2008 to 151 million in 2060.

•The number of oldest-old (age 80 years and above), is projected to triple from 22 million in 2008 to 61 million on 2060.

•Significant increase in life expectancy, especially for women, particularly pronounced in Euro area Member States.

•Increases in longevity accelerates the growth of the proportion of elderly people relative to that of children or adults of working age.

Ageing

million in 2008 to 61 million on 2060.

•In the same period, the EU will move from having four people of working age for every person aged over 65 to a ratio of only two to one.

•While EU Countries are projected to follow different population change trajectories, the population is projected to become older in all Member States.

working age.

•Sustained reduction of fertility rates.

•Migration patterns.

•Progress in bio-medical technology.

•Improvements in health and social care systems.

•Changes in private lifestyle, for example reduction of smoking.

Source: European Commission and the Economic Policy Committee (2009), ‘Ageing Report 2009’ , European Economy, no 2/2009

Sally, Sally, Sally

Ageing Population and Conceptions in the EUThe median age of the total population is likely to increase in all countries without exception

Ageing

Median Age of the Total Population

• The median age is projected to increase more than 15 years in Poland and Slovakia.

• In contrast, the median age is projected to increase less than 5 years in Luxembourg, theUnited Kingdom, Denmark, Metropolitan France, Sweden, Belgium and Finland.

Source: Eurostat, EUROPOP2008 convergence scenario

Ageing Population and Conceptions in the EUOld age dependency ratio is expected to increase for the whole group

•Young age dependency ratio forthe EU27 population is projected torise moderately to 25.0% in 2060.

Projected Age Dependency Ratios for EU 27

%

Ageing

rise moderately to 25.0% in 2060.

•Old age dependency ratio isexpected to increase substantiallyfrom its current levels of 25.4% to53.5% in 2060.

:Source: Eurostat, EUROPOP2008 convergence scenario

Sally, Sally, Sally

Ageing Population and Conceptions in the EU While old age dependency ratio is expected to increase for the whole group, individual countries are affected differently.

Ageing

Old age dependency ratios for the EU member states, Norway

and Switzerland, 2008-2060

•In 2008, the old agedependency ratio in the newMember States is, relatively,lower or much lower than theEU27.

•By 2060, with the exception of Cyprus, all new Member States are projected to

:Source: Eurostat, EUROPOP2008 convergence scenario

States are projected to experience higher increases in old-age dependency ratios than the EU27 as a whole as i.e. 28.1 percentage points.

•Thus these countries, are expected to have old age dependency ratios higher than the EU27 and among the highest from the whole group of countries.

Sally, Sally, Sally

Ageing Population and Conceptions in the EU Population Ageing in the EU in the Global Context

Ageing

Old age dependency ratios by main geographic area and for

Selected countries in % in 1950, 2000 and 2050. People aged 65 or

above relative to the working age population

•The share of the population of what is the EU today halved from about 15% of the world population in 1950 to 8% in 2000, and it is projected to shrink to close to 5% in 2050.

•Sharper increases are projected during the period 2000 to 2050 everywhere. The largest increases are projected to take place in Japan

:

are projected to take place in Japan (by close to 50 p.p.), China and the EU27 (by almost 30 p.p.).

•In 1950 the EU had the highest old-age dependency ratio in the world, close to that of the US, and its increase has been the fastest over the period 1950 to 2000, rising by 10 percentage points.

Source:The United Nations Population Division produces global population projections revised every two years. The2008 Revision was released on 11

March 2009, in the European Commission and the Economic Policy Committee (2009), ‘Ageing Report 2009’ , European Economy, no 2/2009

Prevalence and Conceptions of Mental Health in the EUMental health problems which arise in older age are diverse and wide ranging

• The kinds of mental health problems that arise in older age are enormously diverse. They can be classified as:

-Severe and enduring problems that emerge during earlier stages of the life course and persist into old age, such as schizophrenia, depression or other psychoses.

-Mental health problems that arise for the first time in later life for example most commonly depression and anxiety and dementia that becomes more prevalent with increasing age.

Mental Health

-These problems do not only appear singly but often occur in combination, for example, depression and anxiety, depression and dementia, depression and alcohol misuse - and co-morbidity affects outcomes.

• The impact of ageing, including the cognitive, biomedical, physical, social and cultural aspects, can all contribute to the vulnerability to later life mental health problems.

Source: Institute of Health Sciences and Public Health Research, University of Bradford (2005) Prevention and Service Provision: Mental Health

Problems in Later Life

Prevalence and Conceptions of Mental Health in the EUThe double disadvantage

• Older people with mental health problems face the dual stigma, from age and as a result of their mental illness.

• While there has been significant challenge to the stigma of mental illness with the introduction of a ‘disability perspective’ on mental health problems of ‘working age’ adults this has been less evident within policy and services for older people.

• Mental health promotion is a neglected area within the already neglected area of mental health services. Government policy has traditionally paid more attention to physical health than to mental

Mental Health

services. Government policy has traditionally paid more attention to physical health than to mental health.

• There is a need to reverse the continued negative stereotyping and massive under-utilisation of older peoples mental capital: in order that the considerable mental resources of older people are recognised and unlocked for the benefit of themselves and society.

• While the interconnectivity between mental ill-health, social characteristics and social position has been explored in recent academic research, correlations between mental health, socio-economic situation, social exclusion and social capital as these relate to older people have yet to be meaningfully examined.

Source: Institute of Health Sciences and Public Health Research, University of Bradford (2005) Prevention and Service Provision: Mental Health

Problems in Later Life

Prevalence and Conceptions of Mental Health in the EUAn expected increase in mental illness

• Differing definitions of mental health and limited harmonisation of data across the EU member states makes it difficult to assess and compare figures across the EU.

• As the older population of the EU continues to expand, there will be a disproportionate increase in dementia, depression and mental illness.

• Major depression is a relatively rare disease among older people, but when depressive syndromes are considered, these symptoms appear common among older people.

• The prevalence of depressive syndromes ascertained by categorical diagnosis varies between 7.9% and 26.9% across EU member states with the majority of studies giving results between 9

Mental Health

7.9% and 26.9% across EU member states with the majority of studies giving results between 9 and 15%.

• The prevalence of depressive symptoms across the EU member states ranges from 6.4% in Germany to 6.1% in France.

• Studies based on anxiety disorders are less common, estimates of prevalence vary from 2-10%, with anxiety disorders in people over 65 years ranging from 8.7% in Germany to 15.9% in France.

Source: De Girolama G, Alonso J, Vilagut (2000) European Study of the Epidemiology of Mental Disorders/Mental Health Disability: A

European Assessment

Definitions, Conceptions and Prevalence of Dementia in the EU

• Dementia is characterised by loss of or decline in memory and other cognitive abilities. It iscaused by various diseases and conditions that result in damaged brain cells.

• Different types of dementia have been associated with distinct symptom patterns anddistinguishing microscopic brain abnormalities. Increasing evidence from long-termepidemiological observation and autopsy studies suggests that many people have microscopicbrain abnormalities associated with more than one type of dementia.

• Dementia is a progressive condition. This means that the symptoms become more severe overtime.

Dementia

• The symptoms of different types of dementia also overlap and can be further complicated bycoexisting medical conditions.

• Researchers are still working to find out more about the different types of dementia, and whetherany have a genetic link. It is thought that many factors, including age, genetic background,medical history and lifestyle, can combine to lead to the onset of dementia.

• Dementia can affect people of any age, but is most common in older people.

• Alzheimer’s disease is the most common cause of dementia.

Definitions, Conceptions and Prevalence of Dementia in the EUAlzheimer’s disease is the most common form of dementia

• Alzheimer's disease, first described by the German neurologist Alois Alzheimer in 1906, is a physical disease affecting the brain.

• It is a disease in which a wealthy person becomes poor, as Esquirol said of his patients, and the way we look at them depends on the memories that we have of them and which they may no longer have or have hidden away elsewhere.

• During the course of the disease, 'plaques' and 'tangles' develop in the structure of the brain, leading to the death of brain cells. People with Alzheimer's also have a shortage of some important chemicals in their brains. These chemicals are involved with the transmission of messages within the brain. Alzheimer's is a progressive disease, which means that gradually, over

Dementia

messages within the brain. Alzheimer's is a progressive disease, which means that gradually, over time, more parts of the brain are damaged. As this happens, the symptoms become more severe.

• Alzheimer’s disease can affect different people in different ways, but the most common symptom pattern begins with gradually worsening difficulty in remembering new information. As damage spreads, individuals also experience confusion, disorganised thinking, impaired judgment, trouble expressing themselves and disorientation to time, space and location, which may lead to unsafe wandering and socially inappropriate behaviour.

• In advanced Alzheimer’s, people need help with bathing, dressing, using the bathroom, eating and other daily activities. Those in the final stages of the disease lose their ability to communicate, fail to recognise loved ones and become bed-bound and reliant on 24/7 care. Alzheimer’s disease is ultimately fatal.

�A fear and lack of understanding of mental illness is one aspect of this stigma,in dementia this is associated with the appearance of

behaviour disturbance,

Definitions, Conceptions and Prevalence of Dementia in the EUConceptions of dementia and the associative stigma attached varies across EU Member States, these are however slowly being challenged and redefined

Dementia

Conceptions of dementia – sits at the

intersection of the two

,

Stigmatising attitudes of mental health

Negative attitudes towards ageing

�Pervasive negative attitudes to ageing is the other aspect of this stigma, cognitive impairment such as memory loss is often considered to be

an almost expected and

Gradually these conceptions are being challenged and dementia is now being

increasingly reframed as a degenerative

neurological disorderbehaviour disturbance, delusions and hallucinations.

•In popular culture these symptoms have become to define dementia itself and has led to a disease model being adopted by the public and by some professionals.

an almost expected and normal part of ageing.

neurological disorder

This change and an increasing push to embed dementia in a dignity, equality and

human rights framework

Will lead to a more equitable and just response in service provision for all EU citizens with dementia and their families

Source: Iliffe, S et al (2005) Understanding obstacles to the recognition of and response to dementia in different European Countries

Definitions, Conceptions and Prevalence of Dementia in the EUTypes of Dementia and characteristics

Dementia

Source: Alzheimer’s Association US, (2009), ‘Alzheimer’s Disease Fact and Figures’

Definitions, Conceptions and Prevalence of Dementia in the EUTypes of Dementia and characteristics, continued.

Dementia

Source: Alzheimer’s Association US, (2009), ‘Alzheimer’s Disease Fact and Figures’

Definitions, Conceptions and Prevalence of Dementia in the EU6.1 million people with dementia in European Union, with numbers expected to double or treble by 2050.

Dementia

Prevalence of dementia in the elderly in Europe by gender

Source: Lobo et al, (2000), EURODEM group, Alzheimer’s Europe (2006): Dementia in Europe Yearbook, Ferri et al. (2006) Global prevalence

of dementia: A Delphi consensus study. The Lancet, Vol 365, December17/24/31, 2005

Definitions, Conceptions and Prevalence of Dementia in the EUOne new person every seven seconds somewhere in the world has dementia and over two-thirds of people are to be found in the developing countries.

Dementia

Worldwide Prevalence of dementia by WHO region

Source: Ferri et al (2005). The Lancet, Vol 366: 2112-2117

Definitions, Conceptions and Prevalence of Dementia in the EUThe Statistics

Dementia

Estimates for Prevalence of dementia (%) for each region and age group

Source: Ferri CP, Prince M, Brayne C, et al.; Global prevalence of dementia: A Delphi Consensus Study, The Lancet,

2005; 336:2112-2117

Definitions, Conceptions and Prevalence of Dementia in the EUAn estimated 25 million people with dementia and this number is set to double every 20 years.

Dementia

Increase of dementia over the next 30 years

in the 60+ population (in millions)

• By 2020, there will be more than 40 million people with the disease and by 2040, more than 80 million.

• In the next 30 years in the population aged 60 or over, in Europe, as in many western countries, the population will double, from approximately 5 million to 10 million by 2040.

Source: Ferri et al (2005). The Lancet, Vol 366: 2112-2117, Brodaty, H (2008), UE2008.Fr

• There are similar figures for the US, North America and Australia, which is on a lower ratio.

• China will go from 6 million to 26 million and with a one-child policy. By 2040, China and India will have half the world’s population of people with dementia.

Impact of Dementia in the EUDementia poses considerable medical, social and economic concerns as it impacts individuals, families and heath and social care systems

Impact

•The impact of dementia presents a challenge to all EU member states, increasingly the discourse surrounding the impact is framed in relation to cost and consumption, rather than representing interventions as an investment in future health and social care.

•The socio-economic impact of dementia and Alzheimer’s disease can be defined asbeing comprised of: deterioration of health and social welfare losses due to the illness, andthe resources devoted to diminishing and preventing those welfare losses.

•The components are measured in different units because welfare losses (anxiety,pain, suffering, stress and death of individuals and their families) cannot and should not be

Source: Alzheimer Europe, (2008), Dementia in Europe Yearbook 2008

pain, suffering, stress and death of individuals and their families) cannot and should not be measured in monetary terms, whereas the value of resources used in health and social care are to a large extent easily measurable in monetary terms.

•With the financial resources in the health care and social security systems under increasing stress and the predicted growth in the number of people with dementia the question on how to improve care and the cost-effectiveness of care will be critical.

•The number of studies into the economic and social burden is limited, restricted to a few European countries and the situation in Eastern Europe is particularly under represented.

Impact of Dementia in the EU The cost of dementia in Europe

Impact

Cost of illness in Europe (add eurossign billion) in 2005 forAlzheimer’s disease and other forms of dementia

�Figures based on 14 papers selected as eligible for a European cost model.

The key criteria was that direct costs and informal care costs could be identified.

•The total cost of illness of

Source: Alzheimer Europe, (2008), Dementia in Europe Yearbook 2008

Annual cost per person with dementia in Europe (add euro sign) in 2005 forAlzheimer’s disease and other forms of dementia

•The total cost of illness of dementia disorders in EU27 in 2005 was estimated at €130 billion, of which 56% were costs of informal care.

•The costs per person with dementia in Europe was estimated at €21,000 per year.

Impact of Dementia in the EUThe cost of dementia in Europe compared to the rest of the world

Impact

Global Cost of Dementia in billions US$

�The highest costs were in the USA, followed by Japan and China.

�77% of the world cost of dementia was incurred in

Source: Wimo et al (2007) An estimate of the total worldwide costs of dementia in 2005 in Alzheimer’s and Dementia 3, 2007

dementia was incurred in the world’s most developed countries.

�2/3 of people with dementia live in developing countries, while most costs are incurred in the advanced economies of the world.

Impact of Dementia in the EUIncreasing pressure on the funding of public services

Impact

� If we consider dementia to be part of the challenge of Europe’s ageing population, it is evident theneed for public provision of services will increase. The fiscal impact of ageing is projected to besubstantial in almost all Member States.

� Overall, on the basis of current policies, age-related public expenditure is projected to increase onaverage by about 4¾ percentage points of GDP by 2060 in the EU and by more than 5percentage points in the euro area – especially through pension, healthcare and long-term carespending.

� Demographic trends will push up public pension expenditure very significantly in all Member

Source: European Commission (2009): Communication on Dealing with the Impact of an Ageing Population in the EU (2009 Ageing Report)

Demographic trends will push up public pension expenditure very significantly in all MemberStates, though there are notable differences in the impact of ageing across Member States:

� The increase in public spending will be very significant (7 percentage points of GDP or more) innine EU Member States (Luxembourg, Greece, Slovenia, Cyprus, Malta, the Netherlands,Romania, Spain, and Ireland).

� For a second group of countries – Belgium, Finland, Czech Republic, Lithuania, Slovakia, theUnited Kingdom, Germany and Hungary – the cost of ageing is more limited, but still very high(from 4 to 7 percentage points of GDP).

� Finally, the increase is more moderate, 4 percentage points of GDP or less, in Bulgaria, Sweden,Portugal, Austria, France, Denmark, Italy, Latvia, Estonia and Poland.

Impact of Dementia in the EUIncreasing pressure on the funding of healthcare for older people

Impact

• It is almost impossible to identify health care expenditure that is exclusively targeted on peoplewith dementia. However, we can look at developments and trends in health care more generally.

• The governments of all EU Member States are heavily involved in the financing, and in somecases in the provision, of health care. Consequently, health care spending is a major, and overtime growing, source of fiscal pressure.

• As seen in the past trends, increases in spending on health care should be credited only to alimited degree to demographic or morbidity developments. Instead, policy decisionsto expand access and improve quality, as a result of rising living standards and societalexpectations, as well as technological progress, are the main factors driving expenditure up

Source: European Commission (2009): The 2009 Ageing Report

expectations, as well as technological progress, are the main factors driving expenditure upover the last decades.

• Similar trends are expected to occur in the future. Continuous change in the structure of thepopulation is expected to have an impact on health care expenditure mainly through the parallelevolution in the health status of the population directly affecting demand for care.

• Healthcare systems in the EU are expected to face substantial challenges in the future. Publicexpenditure on health care is projected to grow by 1½ percentage points of GDP in the EU by2060. Although the 'old' Member States are still going to spend more for a couple of decades, therates of growth is expected to be higher in the new Member States.

Impact of Dementia in the EUProjected growing health care costs across the EU 27

Impact

Results from different scenarios on health care in EU 27 •The impact of demographic changes on public health expenditure is projected to be significant (an average (EU27) increase from 6.7 to 8.4% of GDP), although this is not as equally pronounced across all countries.

•As expected, public expenditure

Source:

on health care calculated according to the "constant health scenario" is considerably lower than the spending under the pure demographic effect. It increases from 6.7 to 7.5% of GDP for EU27, thus the pure impact of demographic change (1.7% of GDP) is more than halved.

European Commission (2009): The 2009 Ageing Report

Impact of Dementia in the EUIncreasing pressure on the funding of long-term care for older people

Impact

• The governments of most EU Member States are involved in either the provision or financingof long-term care services, or often both, although the extent and nature of their involvementvaries widely across countries.

• In the future, the demand for formal care services by the population is likely to grow substantially.The ageing of the population is expected to put pressure on resources demanded to provide long-term care services for the frail and elderly and the ratio of long-term care expenditure to GDP isexpected to rise in the future.

• Some Member States rely heavily on the informal provision of long-term care and theirexpenditure on formal care is accordingly small, while other Member States provide extensive


expenditure on formal care is accordingly small, while other Member States provide extensivepublic services to the elderly and devote a significant share of GDP to fund their policies.

• Public expenditure on long-term care will be influenced by a range of factors including: the futurenumbers of elderly people, through changes in the population projections; the future numbers ofdependent elderly people, the prevalence rates of dependency, the balance between formal andinformal care provision, the balance between home (domiciliary) care and institutional care withinthe formal care system and the costs of care.

• Availability and access to formal care services will increasingly shape the welfare of elderlycitizens and their families, including people with dementia and their carers.

Impact of Dementia in the EUProjected growing long-term care costs across the EU 27

Impact

Projected expenditure on long-term care according toThe different scenarios in EU 27, % of GDP

�An ageing population will place strong upward pressure on public expenditure on long term care.

�The projected changes in public expenditure are very diverse reflecting very different approaches to the provision/financing of formal care.


�Countries with very low projected increases in public expenditure have very low current levels of formal care provision. Projections of age-related expenditure increases are low as their elderly citizens in need of care currently rely on informal care.

Impact of Dementia in the EUThe cost for carers: unpaid carers are the main source of care

Impact

• The majority of care for people with dementia is provided by unpaid carers, this includes families,friends or neighbours. Between 50% and 80% of patients with Alzheimer's disease are cared for athome, as the patient’s function deteriorates the burden on care givers increases.

• The coping mechanisms and resources of the carers can be severely tested, they face thepotential of social isolation, mental and physical health problems, financial hardship andprofessional disadvantage.

• The contribution of unpaid carers represents a significant economic value - however policymakers and other stakeholders often treat informal care as a ‘free resource’. It entails significant

Source: Alzheimer Europe (2006): Who cares? The state of dementia care in Europe, Alzheimer Europe, (2008), Dementia in Europe Yearbook

2008. Wimo et al (2007) An estimate of the total worlwide costs of dementia in 2005 in Alzheimer’s and Dementia 3, 2007.

makers and other stakeholders often treat informal care as a ‘free resource’. It entails significanteconomic costs for individuals and society. Economic analysis is primarily concerned with theopportunity costs of caring; i.e. what would have been done had an individual not been caring.

• The proportion of formal and informal care varies between countries as a result of how care isorganised and financed, but also as a result of traditions and cultural aspects. It is fundamental toconsider each country’s local prerequisites for dementia care. As a general rule, there is moreformal care in countries in which the Gross National Product (GDP) is high.

• Population movement, changing family structures and working patterns are all set to influencecare patterns.

Impact of Dementia in the EUSurvey of unpaid carers highlights the need for improved advice and support

Impact

The impact of carers: Hours per day caring for a person with dementia

� A survey of 1181 carers of people with dementia in five European countries revealed that half of the carers were caring for more than 10 hours per day.

�Half felt they had received inadequate information on dementia when the person was diagnosed.

�Over half had access to services such as

Source: Alzheimer Europe (2006): Who cares? The state of dementia care in Europe

�Over half had access to services such as home care, day care or residential/nursing home care.

�Only 17% consider that the level of care for the elderly in their country was sufficient.

Impact of Dementia in the EUAttitudes to formal and informal care across the EU

Impact

For each of the following statements regarding the care of the elderly,please tell me to what extent you agree or disagree? -% EU 27

•93% of European citizens support the idea that public authorities should provide appropriate home care and\or institutional care for elderly people in need.

•89% feel that family carers should

Source: Eurobarometer (2007): Health and Long-Term Care in the European Union

•89% feel that family carers should receive financial support from the state and be paid an income for their duties.

•The majority of Europeans feel that paying into an insurance scheme that will finance care if and when care is needed should be obligatory (70%).

Dementia in EU Member StatesThe dynamics behind policy interventions

• The diagnosis, treatment and care of people with dementia in each European Union Member States is distinct, though certain commonalities in approach and outcomes are discernible.

• There are a number of issues in relation to dementia that influence the direction and course of policy interventions on dementia – these include:

– The impact of demographic change on the numbers of people with the condition.– The need for better diagnosis; the negative, stigmatising attitudes on dementia.

EU Member States

– The need for better diagnosis; the negative, stigmatising attitudes on dementia.– Whether service systems are meeting the needs of individuals and families, and especially

whether institutional services are appropriate.– The financing arrangements necessary to secure good quality service systems.– The roles of families and unpaid carers. – The need for better inter-agency arrangements to improve the efficiency.– Fairness and affordability of care systems.

Source: Knapp et al (2007) Dementia: International Comparisons, summary report for the National Audit Office

Dementia in EU Member StatesDifferent system responses

• Prevalence rates for dementia vary relatively little from country to country, at least

among high-income countries.

• However different health and social care systems:

– Identify and diagnose dementia in different ways.

– Identify and assess needs in sometimes distinct ways and at different levels.

– Devote variable amounts of resources to meet those needs, and choose a variety of ways to deliver treatment and support, whether through formal services or by relying on families and other carers.

EU Member States

relying on families and other carers.

• Underlying financing mechanisms also vary. These include: variations in need, resource base.

• System response and financing arrangements arise for reasons that include: demographic pressures; socio-economic contexts; macroeconomic capabilities; societal attitudes; cultural and religious orientation; and the political commitment and policy priorities that flow from them.


Dementia in EU Member StatesHealth and social care frameworks in EU Member States

• The needs of older people with dementia are complex, linked to their deteriorating health, specific mental health needs and their lack of autonomy.

• Some people with dementia require health care and some are more appropriately met by social care, although the boundaries between these needs are hard to draw.

• Different patterns of service provision have grown up in different countries, influenced by national culture, financing arrangements, bureaucratic procedures, social care workforce and the preferences of service users and families.

EU Member States

• The distinction between health and social care has significant implications both for what gets delivered and at what cost and for the balance of funding (if different eligibility criteria influence threshold levels of dependence, for instance).

• In turn, this could encourage cost shifting and the risk of people falling between two systems.

• This ambiguity between health and social care has implications for international comparisons of spending patterns and provision.


Dementia in EU Member StatesThe determination of the utilisation of health and social care systems in EU Member States

EU Member States

Source: Alzheimer’s Europe (2008) Dementia Year Book

Dementia in EU Member StatesInequalities in dementia diagnosis and care, from symptoms to diagnosis

EU Member States

• Across the EU fewer than 50% of people with dementia receive a diagnosis, there are however variations across the EU Member States.

• While there are few differences between countries in the underlying prevalence of dementia, there are marked differences in the rate of diagnosis.

• There is a general consensus that diagnosis should be made as early as possible. Early intervention is widely considered to be cost-effective, the ‘spend to save’ adage.

• There is a widespread reticence among primary care doctors to make the diagnosis


• There is a widespread reticence among primary care doctors to make the diagnosis of dementia in their patients. The stigma that primary care staff attached to dementia appears to inhibit referrals for diagnostic assessment.

• The large majority of people with dementia either do not receive a specialist diagnosis at any time in their illness or do so only late in the disorder or at a time of crisis.

• The rate of diagnosis will affect the individual’s access to treatment and care.

Dementia in EU Member States Inequalities in dementia diagnosis and care, from symptoms to diagnosis

EU Member States

Months between first symptoms

and diagnosis

•There are a range of different systems at the national and local level with regard to diagnosis, these include: memory clinics and specialist old age psychiatry services.

•Diagnosis and treatment might also

Source: International Journal of Clinical Practice (2005) Inequalities in dementia care across Europe, Text: Knapp et al (2007) Dementia:

International Comparisons, summary report for the National Audit Office

•Diagnosis and treatment might also be carried out by a geriatrician, a neurologist (sub-specialties of general medicine) or a GP.

•Who takes the lead in other countries depends on the development of national health care systems, and professional capacity, interests and financial benefits.

Dementia in EU Member StatesThere are a number of approaches to the funding of health and social care

• There are a number of approaches to the funding of health care (Mossialos et al

2002) and of long-term care for older people (Wittenberg et al. 2002). These can be

grouped into four main categories:

• Out-of-pocket payments by service user or family (‘user charges’), including from

release of housing equity.

• Voluntary insurance, sometimes called private insurance.

• Tax-based support, funded from direct and/or indirect taxes, and with services

provided on the basis of need.

EU Member States

provided on the basis of need.

• Social insurance with services provided on the basis of need.

• Most countries rely on more than one financing approach, often even within a single

service system.

• Many countries are increasing the resources they devote to long-term care and also

contemplating the future funding of long-term care in the face of rising demand.


Dementia in EU Member StatesComparisons in long-term care funding in an international context

EU Member States

Public and private expenditure on long-term care as a percentage of GDP 2000


Dementia in EU Member StatesDifferent patterns of service provision

• Individuals with dementia may require health and/or social care, depending on the needs of the individual through the progression of the disease.

• The boundaries between health and social care are sometimes hard to distinguish: influenced by national culture, financing arrangements, bureaucratic procedures, availability of skilled staff and to a lesser extent the preferences of service users and families.

• The distinction between health and social care has potentially significant implications both for what gets delivered and at what cost and for the balance of funding.

EU Member States

• The most important provider of care for older people is the informal/unpaid sector, carers can be family, friends or neighbours. Community groups also offer support. Particularly in the early and middle stages of the disease, carers provide the majority of support to the individual.

• It is often in the later stages that individuals then encounter formal health and social care support systems, often in the form of residential/institutional care. As the severity of dementia increases, social care becomes relatively more important than medical care, except perhaps at the very end of life.


Dementia in EU Member StatesComparisons in care home provision in an international context

EU Member States


Sources: Moise et al. (2004, p. 43), OECD (2005, p. 41), Eurofamcare (p. 88 et seq.), Gibson et al. (2003), national

statistics for UK countries.

Dementia in EU Member StatesComparisons in home based and community provision in an international context

EU Member States


Sources: Moise et al. (2004), OECD (2005), Eurofamcare (2004), Gibson et al (2003), IMERSO (2006)

Dementia in EU Member StatesCurrent trends and challenges in service provision

• In many EU Member States dementia is emerging as a policy priority, partly accountable to the current and projected figures on ageing populations.

• There is a growing consensus across European networks that developing national action plans on dementia is the ‘gold standard’ of policy interventions.

• The EU Member States with action plans or variants of include: France, the UK, Norway, the Netherlands and Italy.

• The impetus for such actions derives from a range of actions and actors, including: high level

EU Member States

• The impetus for such actions derives from a range of actions and actors, including: high level champions, as in the case of President Sarkozy in France and the growing prominence and weight of campaigning charities. A key part of these action plans are often dementia specific health and social care programmes.

• Dementia specific actions or programmes are not in themselves a panacea, particularly if wider support systems and structures in the health and social care arena are not in place.


European Union Current Actions on DementiaThe role of the EU

• Health and social services are mainly within the responsibility of Member States.

• Article 152 of the Amsterdam Treaty recognises an emerging role for the EU due to an increasing convergence of health care systems across Member States.

• The Amsterdam Treaty states that: ‘a high level of human health protection shall be ensured in the definition and implementation of all Community policies and activities’.

EU Actions

• Proposals in other key areas of Community activity such a the internal market, social affairs, research and development, agriculture, trade and development policy, environment, etc, are now all linked to the promotion of health protection.

• The European Commission has now ample scope for direct intervention in healthcare matters, in areas such as standardisation of indicators, infra-structural development for data exchange, stimulation of exchanges on evidence-based developments and best practices, and promoting quality benchmarks and supporting networking for greater coordination among different national and international groups.

Source: European Foundation for the Improvement of Living and Working Conditions (2004) Sector Futures: Policy and Actions for a Healthy

Europe

European Union Current Actions on DementiaThe basis for action of the EU

• The Work Plan for 2005 for the Implementation of the programme of Community action in the field of public health (2003-2008) included for the first time a specific reference to the need for information and definition of indicators on the prevalence, treatments, risk factors, risk reduction strategies, cost of illness and social support as well as

what constitutes a ‘healthy brain lifestyle’ related to Alzheimer disease (AD) and other dementias.

• The White Paper COM (2007) 630 ‘Together for Health: A Strategic Approach for the EU 2008-2013’ of Oct 2007 as part of developing the EU Health Strategy also indentified the need for a better understanding of neurodegenerative diseases such as Alzheimer’s.

EU Actions

• 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. This called on Member States and the Commission to recognise Alzheimer’s disease as a priority for action in the context of the ageing of the EU's population.

• More recently the Commission adopted on 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. 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.

.

Source: European Commission (2009) , http://ec.europa.eu/health/ph_information/dissemination/diseases/alzheimer_en.htm

,

European Union Current Actions on DementiaEuropean Initiatives to take into account

• The Directive on patients’ rights in cross border health care – the proposal concerns the free movement of patients and their access to health care.

• The adoption in 2008 of the European Pact for Mental Health and well-being as a symbol of the determination to exchange and work together on mental health opportunities and challenges related to older populations.

• The report on Long Term Care adopted by the Social Protection Committee (July 2008) under the Open Method of Communication (OMC) containing certain provisions related to health care.

EU Actions

• The conclusions of the project EuroCoDe (European Collaboration on Dementia), this project examined the EURODEM data taking into account studies performed in the last 20 years looking at dementia prevalence and pooled these in a collaborative analysis.

• April 2009, Trakatellis report on the Council recommendations in the field of rare diseases, this aims to encourage Member States to create specific training for professionals and compile a catalogue of experts on rare diseases.

• Anti-Discrimination Directive – the directive is intended to reduce discrimination on grounds of religion, or belief, age, disability or sexual orientation. MEPs want the directive to cover transport, telecommunications, information, financial services, culture and leisure.

Source:Source: European Commission (2009) , http://ec.europa.eu/health/ph_information/dissemination/diseases/alzheimer_en.htm

European Union Current Actions on DementiaThe role of the EU in research

• One of the most widely recognised roles of the EU with regard to dementia is in the field of research. There is a growing consensus on the value of pooling and coordinating research activity and agendas on dementia. The EU is

perceived by many to be instrumental in supporting dementia research initiatives to produce new treatments, preventions and possible cures for the set of diseases.

• The Sixth and Seventh Framework Programme has been critical in this respect.

• FP6 (2002 06) offered ambitious and varied funding schemes and instruments for research on Alzheimer's disease, mostly under "life sciences, genomics and biotechnology for health" (with a clear focus on genomics).

EU Actions

• FP7 (2007–13) offers an even wider range of funding opportunities for Alzheimer's disease research at EU level. Emphasis is on research, taking knowledge from lab bench to bedside, and on the development of new drug targets. Public health, including mental health, is a new area of research. FP7 includes three new funding schemes to fill the gaps left by FP6: the European Research Council (ERC), the Joint Technology Initiatives (JTI) and the ERA-NET plus.

• The Competitiveness Council adopted on September 2008 Council Conclusions on a common commitment by the Member States to combat neurodegenerative diseases, particularly Alzheimer’s, recommending the launch of a European initiative bringing together Member States, the Commission and other stakeholders with a view to not only mobilise and maintain available researchers in Europe , but also to train sufficient numbers of new specialists in order to reduce the impact of the neurodegenerative diseases, particularly Alzheimer's.

.

Source:Source: European Commission (2009) , http://ec.europa.eu/health/ph_information/dissemination/diseases/alzheimer_en.htm

European Union Current Actions on DementiaThe role of the EU in research -continued

• As a consequence of the Competitiveness Council decision on September 2008 a proposal for a Council Recommendation on measures to combat neurodegenerative diseases, in particular Alzheimer’s through Joint

Programming of research activities was adopted on 22nd July 2009.

• The long awaited Joint Programming Initiative invites Member States to work towards a common vision of how research cooperation and coordination at European level can help to understand, detect, prevent and combat ND, especially AD, and develop a Strategic Research Agenda (SRA).

• Areas of Joint Programming might include: exchanging information on national programmes, research activities

and health care systems, identifying areas which would benefit from coordination, joint calls or the pooling of

EU Actions

and health care systems, identifying areas which would benefit from coordination, joint calls or the pooling of resources, facilitating transdisciplinary and cross-sectoral mobility and training;and exploring the joint exploitation of research infrastructures and the networking of research centres.

• The Recommendation also invites Member States to cooperate with the Commission with a view to exploring possible Commission initiatives, using the facilities provided by the existing instruments, to assist Member States in developing and implementing the common research agenda or to promote JP in this area.

• The European Commission also launched a joint research and innovation programme with 23 European countries on ICT products and services for ageing well and large scale pilot projects with regions addressing ICT solutions for elderly people with cognitive problems and mild dementia and as well as their carers

. Source:Source: European Commission (2009) , http://ec.europa.eu/health/ph_information/dissemination/diseases/alzheimer_en.htm

European Union Current Actions on Dementia The role of research on neurodegeneration at the EU level

EU Actions

Source: European Commission (Oct 2008) French Presidency Conference on ‘The Fight Against Alzheimer’s Disease and Related Disorders

European Union Current Actions on DementiaFunding of Neurodegenerative Diseases- Areas covered in FP6

EU Actions

European Union Current Actions on DementiaFunding of Neurodegenerative Diseases- Areas covered in FP7

EU Actions

European Union Current Actions on Dementia – FP7 and

Brain ResearchEU Actions

Source: European Commission (Oct 2008) French Presidency Conference on ‘The Fight Against Alzheimer’s Disease and Related Disorders

Conclusion

• The ageing population across Europe is a testament to our success as a society and advances inhealth, wealth and lifestyle.

• In the presence of such a shift in the age of our population, society must adapt to and respond tothe challenges and opportunities this presents.

• Commensurate with population ageing the number of people with dementia across the EU is setto increase, how Member States respond to this challenge is critical.

• Dementia is emerging as a policy priority in many of the EU Institutions and in many European

Conclusion

• Dementia is emerging as a policy priority in many of the EU Institutions and in many EuropeanMember States.

• How each Member States responds to dementia with regard to systems and structures is distinctand unique, however there are growing commonalities in approach.

• While health and social care are seen as traditionally the exclusive preserve of EU MemberStates, given the continuous convergence of health systems across the EU, it is now recognisedthere is an emerging role for the EU.

• The European Union Institutions are ideally situated to foster, promote and stimulate collaborationthrough its legislative and non-legislative actions and initiatives.

a problem shared is a problem halved? evidence report on dementia in europe

Health & Medicine