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 Europe
Sally-Marie Bamford

February 2010

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About the ILC-UK 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 2010

Acknowledgements
This research has been made possible by an unrestricted grant from Pfizer Inc. We are
grateful for their continued support.

Contents
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

6. Dementia in EU Member States

7. European Union Current Actions on Dementia

8. Conclusion

Introduction 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
dementia in the EU, dementia in EU Member States and European Union current
actions on dementia.

Ageing Population and Conceptions in the EU Ageing
A 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
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

Despite variation across EU member states, policy-makers are developing
more progressive conceptions of ageing

Progressive conceptions of ageing

• Old Age “The old man does not know what is best for him…he cannot accommodate himself
to…the progress of civilization.” (IL Nashcher,19th Century)
•“Ageing is a progressive, generalised impairment of function resulting in an increased
probability of death.” (John Maynard Smith)
•Active ageing “is the process of optimizing opportunities for health, participation and security
in order to enhance quality of life as people age”. (WHO, 2002)
•Successful Ageing refers to the maintenance of physical and mental function, thereby
ensuring that individuals have the psychological and physical “reserves” necessary to
withstand stressful experiences in later life. (Walters et al,1999)
•Healthy Ageing concerns “the process of optimizing opportunities for physical, social and
mental health to enable older people to take an active part in society without discrimination
and to enjoy an independent and good quality of life”. (SNIPH, 2007)

Outside the policy-making sphere, there remains wide cultural variations on
attitudes towards the ageing population.

Confused and regressive conceptions of
ageing in society?

•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.

•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

Under 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 •Significant increase in life expectancy,
almost double, rising from 85 million in especially for women, particularly
2008 to 151 million in 2060. pronounced in Euro area Member States.

•The number of oldest-old (age 80 years •Increases in longevity accelerates the
and above), is projected to triple from 22 growth of the proportion of elderly people
million in 2008 to 61 million on 2060. relative to that of children or adults of
working age.
•In the same period, the EU will move
from having four people of working age •Sustained reduction of fertility rates.
for every person aged over 65 to a ratio •Migration patterns.
of only two to one.
•Progress in bio-medical technology.
•While EU Countries are projected to
follow different population change •Improvements in health and social care
trajectories, the population is projected systems.
to become older in all Member States. •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

The median age of the total population is likely to increase in all countries
without exception

Median Age of the Total Population
Sally, Sally, Sally

• 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, the
United Kingdom, Denmark, Metropolitan France, Sweden, Belgium and Finland.

Source: Eurostat, EUROPOP2008 convergence scenario

Old age dependency ratio is expected to increase for the whole group

Projected Age Dependency Ratios for EU 27
%

•Young age dependency ratio for
the EU27 population is projected to
rise moderately to 25.0% in 2060.
•Old age dependency ratio is
expected to increase substantially
from its current levels of 25.4% to
53.5% in 2060.

Source: Eurostat, EUROPOP2008 convergence scenario :

While old age dependency ratio is expected to increase for the whole group,
individual countries are affected differently.

Sally, Sally, Sally
Old age dependency ratios for the EU member states, Norway •In 2008, the old age
and Switzerland, 2008-2060 dependency ratio in the new
Member States is, relatively,
lower or much lower than the
EU27.
•By 2060, with the exception
of Cyprus, all new Member
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.

Source: Eurostat, EUROPOP2008 convergence scenario :

Population Ageing in the EU in the Global Context

Old age dependency ratios by main geographic area and for •The share of the population of what
Sally, Sally, Sally is the EU today halved from about
Selected countries in % in 1950, 2000 and 2050. People aged 65 or
above relative to the working age population 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
(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 EU Mental Health
Mental 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.

-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

The 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
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

An 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
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

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

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

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

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

• Researchers are still working to find out more about the different types of dementia, and whether
any 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.

Alzheimer’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
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.

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

Stigmatising attitudes of Negative attitudes
mental, health towards ageing
Conceptions of dementia – sits at the
intersection of the two
A fear and lack of Pervasive negative attitudes
understanding of mental illness to ageing is the other aspect
is one aspect of this stigma, Gradually these conceptions are being of this stigma, cognitive
in dementia this is associated challenged and dementia is now being impairment such as memory
with the appearance of increasingly reframed as a degenerative loss is often considered to be
behaviour disturbance, neurological disorder an almost expected and
delusions and hallucinations. normal part of ageing.

•In popular culture these
symptoms have become to This change and an increasing push to
define dementia itself and has embed dementia in a dignity, equality and
led to a disease model being human rights framework
adopted by the public and by
some professionals.
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

Types of Dementia and characteristics

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

Types of Dementia and characteristics, continued.

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

6.1 million people with dementia in European Union, with numbers expected to
double or treble by 2050.

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

One 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.

Worldwide Prevalence of dementia by WHO region

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

The Statistics

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

An estimated 25 million people with dementia and this number is set to double
every 20 years.

Increase of dementia over the next 30 years • By 2020, there will be more than 40 million
people with the disease and by 2040, more
in the 60+ population (in millions) 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.

• 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.

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

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

•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 as
being comprised of: deterioration of health and social welfare losses due to the illness, and
the 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
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.

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

The cost of dementia in Europe

Cost of illness in Europe (add eurossign billion) in 2005 for
Alzheimer’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
Annual cost per person with dementia in Europe (add euro sign) in 2005 for dementia disorders in EU27
Alzheimer’s disease and other forms of dementia
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.

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

The cost of dementia in Europe compared to the rest of the world

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
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.

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

Increasing pressure on the funding of public services

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

Overall, on the basis of current policies, age-related public expenditure is projected to increase on
average by about 4¾ percentage points of GDP by 2060 in the EU and by more than 5
percentage points in the euro area – especially through pension, healthcare and long-term care
spending.
Demographic trends will push up public pension expenditure very significantly in all Member
States, 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) in
nine 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, the
United 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.

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

Increasing pressure on the funding of healthcare for older people

• It is almost impossible to identify health care expenditure that is exclusively targeted on people
with 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 some
cases in the provision, of health care. Consequently, health care spending is a major, and over
time growing, source of fiscal pressure.

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

• Similar trends are expected to occur in the future. Continuous change in the structure of the
population is expected to have an impact on health care expenditure mainly through the parallel
evolution 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. Public
expenditure on health care is projected to grow by 1½ percentage points of GDP in the EU by
2060. Although the 'old' Member States are still going to spend more for a couple of decades, the
rates of growth is expected to be higher in the new Member States.

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

Projected growing health care costs across the EU 27

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
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.


Increasing pressure on the funding of long-term care for older people

• The governments of most EU Member States are involved in either the provision or financing
of long-term care services, or often both, although the extent and nature of their involvement
varies 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 is
expected to rise in the future.
• Some Member States rely heavily on the informal provision of long-term care and their
expenditure on formal care is accordingly small, while other Member States provide extensive
public 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 future
numbers of elderly people, through changes in the population projections; the future numbers of
dependent elderly people, the prevalence rates of dependency, the balance between formal and
informal care provision, the balance between home (domiciliary) care and institutional care within
the formal care system and the costs of care.
• Availability and access to formal care services will increasingly shape the welfare of elderly
citizens and their families, including people with dementia and their carers.


Projected growing long-term care costs across the EU 27

Projected expenditure on long-term care according to An ageing population will place
The different scenarios in EU 27, % of GDP 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.


The cost for carers: unpaid carers are the main source of care

• 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 at
home, 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 the
potential of social isolation, mental and physical health problems, financial hardship and
professional disadvantage.

• The contribution of unpaid carers represents a significant economic value - however policy
makers and other stakeholders often treat informal care as a ‘free resource’. It entails significant
economic costs for individuals and society. Economic analysis is primarily concerned with the
opportunity 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 is
organised and financed, but also as a result of traditions and cultural aspects. It is fundamental to
consider each country’s local prerequisites for dementia care. As a general rule, there is more
formal care in countries in which the Gross National Product (GDP) is high.

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

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.

Survey of unpaid carers highlights the need for improved advice and support

The impact of carers: Hours per day caring A survey of 1181 carers of people with
for a person with dementia 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
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.

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

Attitudes to formal and informal care across the EU

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 andor institutional care for
elderly people in need.
•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%).

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

Dementia in EU Member States EU Member
States
The 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.
– 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

States
Different 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.

• 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.


EU Member
Dementia in EU Member States
States
Health 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.

• 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.


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

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

Inequalities in dementia diagnosis and care, from symptoms to diagnosis 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
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.


Inequalities in dementia diagnosis and care, from symptoms to diagnosis States

Months between first symptoms •There are a range of different
and diagnosis 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
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.

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

EU Member
States
There 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.
• 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.


EU Member
States
Comparisons in long-term care funding in an international context

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


EU Member
Dementia in EU Member States States
Different 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.

• 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.


EU Member
States
Comparisons in care home provision in an international context

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.


Comparisons in home based and community provision in an international States
context

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


EU Member
States
Current 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
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 Dementia EU Actions
The 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’.

• 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

The 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.

• 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 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.

• 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

The 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).

• 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.

.


The 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
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

.

The role of research on neurodegeneration at the EU level

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

Funding of Neurodegenerative Diseases- Areas covered in FP6

Funding of Neurodegenerative Diseases- Areas covered in FP7

European Union Current Actions on Dementia – FP7 and EU Actions
Brain Research

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

Conclusion Conclusion

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

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

• Commensurate with population ageing the number of people with dementia across the EU is set
to 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
Member States.

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

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

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

A problem shared is a problem halved? Evidence report on dementia in europe

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