5.5.2. Dementia including Alzheimer’s disease
Acronyms
5.5.2.1.
Introduction
The term “dementia” is used to describe various kinds of
brain disorders which all involve the progressive damage and death of brain
cells. It is not actually a disease but rather a syndrome (a pattern of
symptoms) which may be caused by an almost infinite number of cerebral and
extracerebral diseases. Neuro-degenerative diseases and small cerebro-vascular
vessel diseases account for most cases of dementia (Kurz, 2002). The prevalence
of dementia in EU is estimated to be 1.1-1.3%, and is constantly increasing.
Dementia is an increasing burden for families and European long term care. The
risk of dementia can be reduced through a healthy lifestyle
Although not limited to old age and not a normal part of
the ageing process, dementia is nevertheless more common in people over the age
of 65. It affects about one person in 20 over 65, one in five over 80 and one
in three over 90. As dementia is more common in older people, delaying the
onset of the disease by five years would halve the number of people with
dementia (Alzheimer Scotland, 2006).
Dementia tends to progress slowly but the structure and
chemistry of the brain gradually becomes severely disturbed, thereby causing
serious cognitive decline. There are over a hundred different kinds of dementia
and symptoms vary from one type to the next and from one individual to the
next. However, people with dementia commonly experience difficulties with
memory and other cognitive functions such as attention, temporal and spatial
orientation, language and executive functioning e.g. planning, organising,
problem solving and judgement. Mood is often affected and there may be physical
disturbances such as epileptic seizures, gait disturbances and difficulties in
swallowing.
These disorders affect the people’s ability to carry out
daily life activities such as washing, preparing food and getting dressed as
well as more complex tasks such as managing personal finances, keeping the
house in order and making travel arrangements. As these problems worsen, people
with dementia gradually become dependent on others for varying degrees of
assistance to enable them to carry on living in their family environments. Full-time
residential care may eventually become necessary.
5.5.2.2. Data sources
The data presented here is taken from two major studies
into the prevalence of dementia in Europe and in the world, and our own
calculations based on these studies and population statistics obtained from
EUROSTAT.
The EURODEM study
EURODEM stands for European Community Concerted Action
on the Epidemiology and Prevention of Dementia. The EURODEM working group
pooled data on the prevalence of moderate to severe dementia in several
European countries and came up with a set of prevalence rates for men and women
in 9 different age groups (30-59, 60-64, 65-69, 70-74, 75-79, 80-84, 85-89,
90-94 and 95-99).
The study included people who had been diagnosed with
dementia and were living at home as well as those in institutions, nursing
homes and residential care. The countries covered in the
study were Germany, France, Italy, the Netherlands, Portugal, Spain, Sweden and the United Kingdom. This must be borne in mind when using the resulting prevalence
rates for other countries where there may be other factors affecting
prevalence.
It is difficult if not impossible to obtain an accurate
estimation of the number of people with dementia as many people never receive
an actual diagnosis and many are in the early stages and have not yet been
diagnosed. Moreover, for most forms of dementia, there are three possible kinds
of diagnosis, namely possible, probable and certain. The latter is only
possible on post-mortem examination of the brain. The statistics presented here
are therefore based on possible and probable diagnoses and hence likely to
under-estimate the real number of people with dementia.
The Ferri et al study
A second, more recent study was carried out by Ferri et
al (2005) on behalf of Alzheimer’s Disease International (ADI). For this study,
12 international experts conducted a systematic review of published studies on
dementia and agreed on prevalence estimates for every World Health Organisation
(WHO) world region, for men and women combined, in five year age groups from 60
to 84 years and for people over 85. A DELPHI consensus method was used. This is
a technique which makes it possible to derive quantitative estimates through
the qualitative assessment of evidence. Where information is scarce, experts
can make inferences using data from comparable contexts and express opinions
free from peer-group pressure. Ferri et al analysed the 14 WHO worlds regions
but for our calculations, we only used the prevalence rates for Western Europe
(Region A) and Eastern Europe (Regions B and C)23.
Apart from the methodological approach adopted by each
study, there are differences in the resulting prevalence rates. In the EURODEM
study, for example, a prevalence rate was calculated for the 30-59 age group
and for men and women separately, whereas in the Ferri et al study, this was
not the case. Also, the EURODEM study calculated separate prevalence rates per
5 year age groups up to the age of 99, whereas Ferri et al reported a
prevalence rate for people aged 85 and over. Ferri et al separated Europe into
Western Europe and Eastern Europe, with a further division in Eastern Europe
between countries with a high death rate and those with a low death rate.
EUROSTAT statistics
Population statistics were extracted from EUROSTAT’s
online database. With the exception of those for the United Kingdom and Estonia, the statistics were from 2005. Those for the UK and Estonia were from 2004.
Population statistics were obtained for men and women separately from 30 to 99 in five year age groups. Once extracted, those for the age groups between 30 and 59 were added
together in order to have the population aged between 30 and 59. In some cases, population statistics were not available for the higher age groups. This was the
case for Austria, Germany, Hungary, Ireland, Luxembourg, Malta, Portugal, Switzerland, Turkey and the United Kingdom. Consequently, the figures are an
underestimation of the real number of people with dementia in some countries
and in the overall total for Europe.
5.5.2.3. Data
description and analysis
Table 5.5.2.1. EURODEM prevalence rates
Table 5.5.2.2. Prevalence rates reported by Ferri et al (2005)
Table 5.5.2.3. The estimated number of people with dementia in
selected EUGLOREH countries
Figure 5.5.2.1. The number of people with dementia in Finland as a %
of the total population
However, certain countries have lower percentages of
people with dementia in their overall populations. This is the case for Cyprus, Ireland, Malta, Poland, Romania and Slovakia. In Slovakia, for example, the percentage
calculated was 0.83. Nevertheless, these countries all follow the same upward
trend.
Ferri et al (2005) made estimates of future
developments based on their prevalence rates and UN population estimates and
projections. The estimate is of 24 million people with dementia in the world
today; this number will double every twenty years. Therefore Ferri et al
predict that there will be 42 million people with dementia in 2020 and 81
million by 2040. These predictions are based on the presumption that there will
not be an effective preventive strategy or cure and no changes in mortality.
The data clearly suggest that the number of people with
dementia as a percentage of the overall population has been gradually
increasing over the last 50 years and that this is likely to continue. Alarming
as this may already seem, the figures presented in this report are likely to be
considerably underestimated due to the lack of availability for what concerns
reliable statistics for all age groups and the under-diagnosis of dementia.
There may be differences in the distribution of different
kinds of dementia from one country or region to the next. However, the
statistics do not differentiate between different kinds of dementia or
different stages of the disease. This is a drawback to existing studies as such
information would be of great importance to policy makers responsible for
organising the provision of services.
For this reason, Alzheimer Europe decided to address
this precise issue. In the framework of the EuroCoDe project, the project
partners of Alzheimer Europe are currently carrying out a meta-analysis of existing prevalence studies
in whole Europe, including the
new Member States, in order to devise new consensual prevalence rates for
dementia. A database will also
be compiled of all European epidemiological studies in this field to-date. They
will be classified by research methodology, disease type, age range, date and
geographical location etc. This work, which will be carried out in collaboration
with a group of European experts, is expected to be finalised by the end of
2008 (Results to be added here when available) (Alzheimer Europe, 2007).
5.5.2.4. Risk
factors
A tremendous amount of research has and is being carried
out in order to identify factors which might cause or protect against dementia
(in particular Alzheimer’s disease and vascular dementia). A number of risk
factors and possible protective factors have emerged from such research. Some,
such as food, physical activity and mental stimulation, can
be changed as they are a matter of lifestyle. Others, such as age, gender and
genetics cannot. Moreover, it is likely that a combination of factors may be
beneficial such as a healthy diet, regular moderate exercise, social contact
and mental stimulation. Certain factors, such as alcohol intake and cigarette
smoking, have been found to both increase the risk of but also protect against
dementia (Haan and Wallace, 2004). Whilst a low level of education and/or a
manual occupation have been associated with an increased risk of developing
dementia, it is difficult to disentangle other social factors which are
associated with them (Godfrey et al, 2005). It is becoming increasingly clear
that certain possible protective factors, such as healthy eating, exercise,
avoiding being overweight and limiting alcohol intake, may also contribute
towards the prevention of other conditions and diseases such as cancer and
cardio-vascular diseases (British Heart Foundation, 2008; EPHA, 2007)
In the framework of Alzheimer Europe’s EuroCoDe
project, a working group led by Professor Lutz Frölich is in the process of
writing a descriptive review of risk factors for dementia based on
meta-analyses and is developing an inventory of recommendations for a healthy
lifestyle to prevent dementia. This will be finalised by the end of 2008
(Alzheimer Europe, 2007).
5.5.2.5. Control
and policy tools
As the number of people reaching old age gradually
increases, so does the number of people with dementia. Governments are
therefore obliged to look for solutions to finance long-term care. In some
countries (e.g. Luxembourg and Germany), there is a separate obligatory
insurance for long-term care. In Austria, too, people may be entitled to a
long-term care allowance. In other countries, long-term care is covered within
the framework of the healthcare system and/or through social welfare services.
In some countries, social support for people with dementia is provided in the
context of care for the elderly on the basis of legislation which stipulates
that elderly people should, as far as possible, be able to live independent
autonomous lives in their own homes if that is what they wish (e.g. Iceland). Younger people with dementia would not be covered by such measures but may be
covered by provisions linked to disability. In countries where the emphasis is
on relatives providing care (e.g. in Greece and Romania), there is very little
state support for people with dementia. Alzheimer Europe is currently carrying
out a survey24 amongst Alzheimer associations to assess the level of
support provided to people with dementia and their carers in the member states
of the European Union as well as in Norway, Iceland, Switzerland and Turkey. The results will be available in December 2008.
The Council of Europe has nominated a NGO Health Grouping
working group on “Prevention”. Prevention is also being taken up by certain
insurance companies offering positive incentives for a healthier lifestyle and
even commercial companies producing food products are emphasising healthy
lifestyles and some are experiencing increased sales of their “healthier
products”. For what concerns dementia, national Alzheimer associations have
produced detailed information on risk reduction and one of the working groups
of the afore-mentioned EuroCoDe project will issue guidelines in 2008 on how to
reduce the risk of developing dementia.
Early diagnosis and appropriate treatment is needed in
order to ensure that people with dementia can continue living in their own
homes or family environment in an autonomous manner for as long as possible.
Earlier diagnosis would raise the recorded number of people with dementia. On
one hand, this could be seen as leading to higher costs for health care and
support services, but on the other hand, institutionalisation could be reduced
which would save costs as long-term residential care is
usually more expensive than maintaining a person at home. This is hardly surprising
when one considers that about 86% of people with Alzheimer’s disease are cared
for at home by a close relative. In some countries, carers are supported in
their task by allowances and by services and support provided to the person
with dementia, but in some countries, support from the government is virtually
inexistent and relatives may even be legally obliged to care for their elderly
dependent relatives.
In 2007,
Alzheimer Europe received funding from DG Sanco under its Public Health
Framework Programme for a 3 year project entitled “European Collaboration on
Dementia – EuroCoDe” (Alzheimer Europe, 2007). This led to the creation of a
network consisting of key actors in the field of dementia and a number of
established pan-European organisations. These individuals and organisations are
now working together on a number of issues such as the development of
consensual prevalence rates, guidelines on diagnosis, treatment and
psycho-social interventions, risk factors and risk reduction/prevention strategies
and an analysis of the socio-economic cost of Alzheimer’s disease.
In 1996 and 1998, the European
Parliament dedicated two resolutions25 to Alzheimer’s
disease in which it stressed the public health implications of an ageing
population and the increase in numbers of people affected by Alzheimer’s
disease and other forms of dementia. Unfortunately, the call for action of the
European Parliament expressed in these two resolutions has largely gone
unanswered. Furthermore, specific funding for Alzheimer’s disease projects has
since been discontinued.
Primary Prevention
Primary preventive measures
include reducing exposure to factors which might cause dementia with the aim of
reducing the incidence of dementia (Cooper, 2002). Certain possible risk
factors such as age, gender or genetic vulnerability or abnormalities cannot be
directly influenced. Measures can nevertheless be taken to reduce exposure to
risk factors which can be influenced and which further increase the risk of
developing dementia in people with the non-modifiable risk factors. Useful
primary prevention measures, which could also cover factors which have a
buffering effect, might for example include improved information about diet,
strategies to reduce vascular risk factors and public campaigns to encourage
people to be more socially and physically active etc. Further research needs to
be carried out to investigate other possible factors which might put people at
risk or have a buffering effect as evidence is often conflicting and inconclusive
(Godfrey et al, 2005).
Secondary Prevention
Early diagnosis and access to effective treatments falls
into the category of secondary prevention. Combined in some cases with an
advance directive, this gives people with dementia the chance to sort out their
personal and financial matters and to live in an autonomous manner for a longer
time. However, for many people with dementia, a time comes when they need
assistance making decisions. At this time, a legal guardian may be appointed.
As people have the right to live and work in other member states of the
European Union, situations are likely to arise whereby a person with dementia
under guardianship moves to another EU country where the law covering
guardianship is different. Alzheimer Europe and its member organisations
therefore call on European countries to ratify the Hague Convention of 13
January 2000 on the International Protection of Adults which regulates the
recognition of national guardianship measures in host countries. Three member states
must ratify the Hague Convention before it can enter into force and so far,
only Germany and Scotland (as part of the United Kingdom but limited to the territory of Scotland should the Convention ever enter into force) have ratified it
(Bundesministerium der Justiz, 2007). Switzerland, the Netherlands and France have signed but not ratified the convention.
Tertiary Prevention
The aim of tertiary prevention is to try to limit
disability and dependency which tend to occur as a result of dementia, and to try
to maintain quality of life. Measures must also be taken to prevent isolation
and social withdrawal not only of the person with dementia but also of the
carer so as to avoid further cognitive decline and even depression.
As it is likely that family carers will continue to play a
key role in caring for people with dementia, Alzheimer associations will
continue to fight for appropriate support and official recognition of their
status. Their rights must also be protected, not only the right to receive support,
but also their pension rights, their rights to special leave to care for the
person with dementia throughout the process and in the last stages and their
right to have a regular break from caring (through the provision of respite
care).
Lastly, as Europe’s population continues to age and
governments are faced with the prospect of higher costs for healthcare, it is
likely that new systems need to be introduced to finance long-term care and
measures introduced to reduce costs. This has already been seen in Germany and
Luxembourg with the introduction of the long-term care insurance but also more
recently in France where President Sarkozy recently pledged to add a charge of
50 cents to the price of every pack of medicine to finance a national programme
to improve the diagnosis and treatment of Alzheimer’s disease and boost
research into the condition.
5.5.2.6. Future
developments
September 2007 saw the launch of the Paris
Declaration, which was signed in Paris during the centenary celebration of
the discovery of Alzheimer’s disease (Alzheimer Europe, 2007a). The declaration
embodies the priorities of the Alzheimer movement to address dementia and
Alzheimer’s disease in an optimal manner. The Paris Declaration lists the
political priorities endorsed by Alzheimer Europe member organisations and
calls on national and European policy makers to consider these recommendations
and act swiftly to make them become a reality by:
·
Ensuring the European
health strategy guarantees quality and safe access to currently available
treatments, efficient health services, prevention and early diagnosis,
awareness campaigns;
·
Addressing the health
inequalities across Europe and improving the level of care;
·
Addressing the huge
information deficit regarding Alzheimer’s disease;
·
As a follow-up to the Paris declaration, the European Alzheimer’s Alliance was set up in order to bring together
Members of the European Parliament committed to supporting Alzheimer Europe and
its members in making dementia a public health priority in Europe (European
Parliament, 1996).
5.5.2.7.
References
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Alzheimer Europe (2007): EuroCoDe, WP4 survey on social
support provided to people with dementia and their carers (ongoing project due
to be finalised in 2008)
Alzheimer Europe (2007a): Paris Declaration on the
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http://www.dementia-in-europe.eu/upload/SLK56FS387ZG/downloads//JVMJAJSYOXEC.pdf
Alzheimer Europe (2006a): Who cares? The state of
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