EUGLOREH project
THE STATUS OF HEALTH IN THE EUROPEAN UNION:
TOWARDS A HEALTHIER EUROPE

FULL REPORT

PART II - HEALTH CONDITIONS

5. HEALTH IMPACTS OF NON COMMUNICABLE DISEASES AND RELATED TIME-TRENDS

5.5. Mental and brain diseases and disorders

5.5.2. Dementia including Alzheimer’s disease

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5.5.2. Dementia including Alzheimer’s disease

 

Acronyms

 

EURODEM

European Community Concerted Action on the Epidemiology and Prevention of Dementia.

EuroCoDe

European Collaboration on Dementia

 

 

5.5.2.1. Introduction

 

The termdementia” 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

 

Prevalence

 

The prevalence rates for the EURODEM and Ferri et al (2005) studies are as follows. The figures represent an estimate of the percentage of people within a particular age range suffering from dementia.

 

Table 5.5.2.1. EURODEM prevalence rates

 

Table 5.5.2.2. Prevalence rates reported by Ferri et al (2005)

 

Using these prevalence rates and the population statistics from EUROSTAT, Alzheimer Europe calculated the estimated number of people with dementia in each country within Europe and in Iceland, Norway, Switzerland and Turkey (Alzheimer Europe, 2006). The results are as follows:

 

Table 5.5.2.3. The estimated number of people with dementia in selected EUGLOREH countries

 

The calculations for the 27 member states of the European Union indicate an estimated 5,526,488 to 6,120,842 people with dementia (depending on which prevalence rates are used). This represents between 1.13 and 1.25 percent of the total population of the 27 member states.

 

Past and future trends

 

Alzheimer Europe also looked at the development of the number of people with dementia in several member states from 1960 to 2005 (Alzheimer Europe, 2006a). Figure 5.5.2.1.1 uses the statistics for Finland to show how the number of people with dementia as a percentage of the population has increased from 1960 to 2005. This increase is linked to the general ageing of the population.

 

Figure 5.5.2.1. The number of people with dementia in Finland as a % of the total population

 

As can be seen from the above graph, in the period from 1960 to 2005, the number of people with dementia in Finland more than tripled. As a percentage of the total population, the increase was from 0.44% to 1.25% (using EURODEM rates). This is currently the same percentage as that calculated for all 27 member states together.

 

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 entitledEuropean Collaboration on DementiaEuroCoDe” (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

 

Alzheimer Europe (2006): Dementia in Europe Yearbook. Alzheimer Europe

 

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 political priorities of the European Alzheimer movement. Available at:

http://www.dementia-in-europe.eu/upload/SLK56FS387ZG/downloads//JVMJAJSYOXEC.pdf

 

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

 

Alzheimer Scotland (2006): Good for you – good for your brain: the evidence on risk reduction and dementia, Alzheimer Scotland. [on-line publication available at: http://www.alzscot.org/downloads/riskreductionbooklet.pdf]

 

 

British Heart Foundation (2008): Keeping your heart healthy, Available at: http://www.bhf.org.uk/keeping_your_heart_healthy/default.aspx (information accessed online on 19 March 2008)

 

Bundesministerium der Justiz (2007): better protection for incapacitated adults in cross-border situations. Press release Available at: http://www.bmj.bund.de/files/-/1922/Press Release in english.pdf (article online, accessed on 13 December 2007)

 

Cooper B (2002): Thinking preventively about dementia: a review, International Journal of Geriatric Psychiatry, 17(10): 895-906

 

European Public Health Alliance (2007): summary of a report by the World Cancer Research fund and the American Institute for Cancer Research on the EPHA website, Available at: http://www.epha.org/a/2808 (accessed online on 19 March 2008)

 

Ferri CL, Prince M et al (2005): Global prevalence of dementia: a Delphi consensus study. The Lancet, Vol. 366, December 17/24/31

 

Godfrey M, Townsend J, Surr C, Boyle G and Brooker D (2005): Summary report for the UK inquiry into mental health and well-being in later life, Chapter 6, available at: http://www.mhilli.org/index.aspx?page=Stage2litpolicyreview.htm (accessed online on 19 March 2008)

 

Haan MN and Wallace R (2004): Can dementia be prevented? Brain aging in a population-based context. Annual Review of Public Health 25: 1-24.

 

Kurz A (2002): Dementia: definition and concept, Alzheimer Europe. Available at: http://www.alzheimer-europe.org/?content=showarticle&lm3=55F3C34B39CB (article online, accessed on 30 November 2007)

 

European Parliament (1996): Resolution of 17/04/1996 on Alzheimer’s disease and the prevention of disorders of the cognitive functions in the elderly and European Parliament (1998): Resolution of 11/03/1998 on Alzheimer’s disease