Definition of dementia

The International Classification of Diseases (ICD-11) defines dementia as 'an acquired brain syndrome characterised by a decline from a previous level of cognitive functioning with impairment in two or more cognitive domains (such as memory, executive functions, attention, language, social cognition and judgment, psychomotor speed, visuoperceptual or visuospatial abilities)'(WHO 2018).

The cognitive impairment ‘interferes significantly with performance of activities of daily living’ (WHO 2018) (ADLs). The syndrome is not a part of normal ageing and even though it is most common in people over the age of 65 (late onset dementia), it also occurs in people under the age of 65 (younger onset or working-age dementia).

Dementia is an “umbrella term” used for describing the characteristic set of symptoms listed above, in a variety of diseases. Available evidence suggests the attribution of different causes to the neurological impairment, which can affect the brain either primarily or secondarily (Table 1) (WHO 2018)(WHO 2019).

Primary dementia describes irreversible forms of dementia, which take a chronic, degenerative and progressive course. The origin is located directly in the brain where neurological or medical conditions or trauma, affect the nerve cells (WHO 2019).

Secondary dementia describes potentially reversible forms of dementia, caused by exogenous factors, such as anaemias, tumours or infections (WHO 2019, Guidelines). Pseudo-dementias (or depression-related cognitive dysfunctions) mimic symptoms associated with dementia. Psychological disorders, such as depression or schizophrenia, but also delirium can cause this phenomenon in older adults (WHO 2015, WHO 2017).

Generally, the course of the dementia syndrome is categorised into an early, a middle and a late stage (Table 2) (WHO 2019). The early stage is often overlooked due to its gradual onset (WHO 2019, Dementia Key facts). In middle stage dementia, signs and symptoms progress and become increasingly restricting and obvious (WHO 2019, Dementia Key facts). Late-stage dementia includes complete dependence on others, inactivity, serious memory disturbances and overall physical signs become more distinct2.

Table 1: Overview and categorisation of a selection of different types of dementia 

Table 2: Overview of the three stages of dementia and the most common symptoms 

Prevalence of dementia in the EU

The World Health Organization reports that about 50 million people worldwide live with dementia in 2019, with 10 million new cases per year (WHO 2019, Dementia Key facts) implying a new case diagnosed every three seconds World Health Organization (WHO 2018, Reference Guide (pdf)). In 2010 in the WHO European Region (comprises 53 countries including all EU Member States) about 10 million people were affected by dementia (WHO 2020, Dementia).

In the EU, dementia prevalence in people over 60 increased from 5.9 million in 2000 to about 9.1 million in 2018 (OECD/EU 2018). The OCED estimates 13.4 million people with dementia for 2030 (OECD/EU 2018), and about 18.7 million cases in Europe in 2050 (OECD 2012).

Table 3: Estimates of dementia prevalence rate per 100 000 among older adults 

Risk factors, determinants of dementia

Non-modifiable risk factors for dementia include age (WHO 2019, Guidelines), gender (overall more women develop dementia than men (WHO 2017) and genetic predisposition.

As for the modifiable risk factors (see Table 4), Alzheimer’s Disease International proposes four key domains:

1. early life and development;
2. psychological and psychosocial;
3. lifestyle and
4. cardiovascular (ADI 2017 (pdf), ADI 2014 (pdf)).

Physical inactivity, tobacco use, unhealthy diets and harmful use of alcohol are examples of the modifiable risk lifestyle factors (WHO 2019, Guidelines).

Hypertension, diabetes, hypercholesterolemia, atherosclerosis, obesity, and depression are, in turn, modifiable factors related to medical conditions and belong to the cardiovascular and psychological/psychosocial domains (WHO 2019, Guidelines).

'The existence of potentially modifiable risk factors means that prevention of dementia is possible through a public health approach' (WHO 2019, Guidelines).

Table 4: Factors related to dementia risk as described by international and national health-related organisations 

Disease and socio-economic burden related to dementia

Considering the ongoing demographic changes in European countries – low birth rates paired with an increase in the proportion of people living longer/living into very old age – the challenge of dementia is set to grow. It burdens individuals, families, communities and nations (WHO 2019, Guidelines). Furthermore, dementia leads to a loss in productivity for economies and has a ‘serious impact on the financial sustainability of national health and social systems’ .

Disease burden related to dementia

Dementia is one of the main causes of dependency and disability among older adults (WHO 2020, Dementia).The 2019 Global Burden of Disease Study estimated 303 thousand deaths and more than 4 million Disability-Adjusted-Life-Years (DALYs) in the EU in 2019 to be attributable to dementia. However, it is important to note that dementia is often misdiagnosed, diagnosed too late, or not diagnosed at all (Alzheimer Europe 2018). Accordingly, the World Alzheimer Report 2016 estimates that only 50 to 60% of people with dementia receive a diagnosis (ADI 2016 (pdf)).

View visualisation: Disability Adjusted Life Years attributed to dementia map

View visualisation: Mortality attributed to dementia map 

Socio-economic burden related to dementia

In 2015, the World Alzheimer Report (ADI 2015) estimated the global societal cost of dementia at around €750 billion (or USD 818 billion), with 40% coming from informal care, 40% from social care, and 20% from medical care. (World Alzheimer Report 2015 (pdf), ADI 2018 (pdf)).

In 2008, the costs linked to dementia disorders in the EU were about €160 billion (sensitivity analysis: range of €111 – 168 billion), whereof €88.6 billion (56%) were attributed to informal care and €71.7 billion (44%) to direct care costs (Alzheimer Europe 2009). By 2030, about 13.4 million people in Europe will be living with a form of dementia, creating costs over € 250 billion.

Reported costs of dementia per case vary depending on the source and country (Table 5) (Alzheimer Europe 2009). In 2008, the European Brain Council reported a cost per person of USD 11 766; Alzheimer Europe reported costs of USD 17 526 and estimates based on the Dementia Worldwide Cost Database were around USD 12 022 (Alzheimer Europe 2009).

Alzheimer’s Disease International (ADI) reported an annual societal cost (including indirect costs due to unpaid caregiving by family or friends, and direct costs, made up of medical cost and social care costs (Alzheimer Europe 2009, ADI 2010 (pdf)) of USD 32 865 per person with dementia, suggesting that an increase in early detection and diagnosis of dementia could lead to savings of USD 10 000 per person across the disease course (ADI 2010 (pdf)). The estimate of the required investment in early diagnoses (prior to dementia onset) by the ADI 2010 is USD 5 000.

Table 5: Cost per person and total costs of dementia in Europe in 2010 

Caregivers' burden related to dementia

When it comes to care systems and dementia, informal caregivers (e.g. family members, friends) take over an important part of the support. A great majority of all the people living with dementia around the world is cared for by family members ( WHO 2012 ). The quantification and monetisation of the extensive amount of unpaid informal care remains challenging (ADI 2018 (pdf)). Informal dementia carers might face a financial burden through the loss of earnings due to reduced working hours, additional costs for travel, expenses due to adaptions in their living spaces (or the living space of the person with dementia), increased phone bills, childcare costs or an increase in any other extra cost associated with care and support (Alzheimer's Society 2019) .

Alzheimer's Disease International estimated an annual global number of informal care hours provided to people with dementia living at home of around 82 billion hours (supervision and support with activities of daily living) in 2015 (Alzheimer Europe 2009). Per case this would equal to 2,089 hours of work per year or 6 hours per day31. In other terms, the estimated work provided by informal caregivers in 2015 was equivalent to the labour of 40 million full time workers (Alzheimer Europe 2009).

Informal care efforts have an effect on the personal and professional life, as well as on the physical and mental health of the family caregivers. Meta-analyses from 2017 found that dementia family carers are significantly more stressed, have a higher prevalence of depressive and anxiety symptoms/ disorders and more physical problems than non-dementia caregivers, and they are at higher risk for cardiovascular diseases (especially hypertension).

Policy recommendations for dementia prevention

A European Parliament Resolution from 2011 called to make dementia a health priority and invited all Member States to address dementia as a national priority (ADI 2016 (pdf)). In December 2015, the EU Council of Ministers adopted the Council of the European Union’s conclusions 'on supporting people living with dementia: improving care policies and practices' (EU 2015).

Dementia shares similar risk factors with many other non-communicable diseases (WHO 2019, Guidelines). Therefore, 'key recommendations can be effectively integrated into programmes for tobacco cessation, cardiovascular disease risk reduction and nutrition' (WHO 2019, Guidelines).

Primary prevention of dementia should focus on mitigating identified modifiable risk factors, namely: improving access to education and countering risk factors for vascular disease, including diabetes, midlife hypertension, midlife obesity, smoking, and physical inactivity. Several countries have linked dementia prevention to other existing prevention strategies, such as strategies on physical activity, non-communicable diseases strategies, brain health promotion or healthy ageing (WHO 2015). Furthermore, several plans or policies focus on dementia risk reduction by targeting lifestyle behaviours (e.g. tobacco, alcohol, physical activity) or addressing general health and well-being.

At the same time, efforts to improve the quality and availability of care, and to seek for cure, should be coupled with urgent investment in primary prevention measures.

Table 6 summarises examples of recommendations for policies and strategies for the prevention of dementia and its deterioration.

Table 6: Examples of policy recommendations for dementia prevention 

Implemented policies on dementia prevention

Various national policies and action plans are in place for the prevention of dementia and mainly involve measures for early diagnosis, quality care promotion and caregivers’ support.

Table 7 lists policies and support actions undertaken by European countries and international health organizations with a focus on dementia prevention.

Table 7: Examples of implemented policies addressing dementia 

References

Overview of the references to this brief