Owen Miller, Policy Officer at Alzheimer Europe, details the care and policy landscape around dementia and Alzheimer’s disease in the EU.
Dementia remains a significant public health concern, affecting millions of people, including people diagnosed with the condition, their carers and families. With no disease-modifying or curative treatment, as well as the progressive nature of the disease, the care and support needed to manage the condition is substantial, particularly towards the later stages of the condition. This is usually at significant cost to the individual, carers and to the state.
Despite this, dementia is not afforded the political priority commensurate with the seriousness and scale of the problem, either at a national or European level. In the following article, Alzheimer Europe will outline some of the key challenges presented by dementia and the actions we wish to see from the EU to address these issues.
Prevalence of dementia
One of the most striking aspects of the challenge posed by dementia is the prevalence of the condition throughout Europe and how this number is expected to rise in the years ahead.
In 2019, Alzheimer Europe published its Dementia in Europe Yearbook, providing updated prevalence estimates for the number of people living with it in Europe. By analysing and applying prevalence estimates (calculated from studies gathered through a literature review) to the UN’s 2018 population figures, the number of people living with the condition in European countries represented by AE members was 9,780,678. In addition, our analysis showed that women continue to be disproportionately affected; with 6,650,228 women and 3,130,449 men living with dementia in Europe. There was a trend towards a reduction in the prevalence among all age groups except for women aged 75 to 79, when compared to estimates conducted by the European Collaboration on Dementia (EuroCoDe) a decade before.
Despite this reduction, the number of people living with dementia in Europe is projected to double by 2050, rising to 18,846,286 in the wider European region (assuming consistent rates of prevalence amongst age groups). This is due to the continued ageing of Europe, which will see significant increases in the older age groups in the coming decades. As our understanding of the diseases underlying mechanisms improves, it is becoming possible to improve the diagnostic process, to the extent that the specific type of dementia and underlying disease can be diagnosed, including identifying persons at a prodromal stage of the disease.
It was evident during our work on the subject that studies estimating the prevalence have not yet caught up to these developments, therefore attaining accurate figures in relation to the number of people with a specific type of dementia, the stage of dementia and young people with dementia, was difficult to establish.
Mortality of the condition
In December 2020, the World Health Organization (WHO) published figures for the updated mortality figures for 2019, showing that for the first time, Alzheimer’s/dementia was in the top ten for global causes of mortality. In line with the higher rates of prevalence, women are disproportionally affected, with 65% of the global deaths from Alzheimer’s and other forms of dementia occurring in women.
More specifically, for the European region (as defined by WHO), Alzheimer’s disease and other forms of dementia were recorded as the third most common cause of death.
In 2017, the WHO published its Global Action Plan on Dementia for 2017-2025, which is currently being implemented by countries across the world and against which good progress has been made in Europe. However, many gaps remain in relation to strategies, diagnosis rates, and the collection and submission of data to the Global Data Observatory and others, which must be addressed.
Despite these issues, WHO Europe’s recent appointment of an Advisory Panel on non-communicable disease does not include a focus on Alzheimer’s or dementia, which Alzheimer Europe finds disappointing and perplexing given our findings on the prevalence of dementia, the UN’s future demographic projections and the WHO’s own figures on dementia as one of the leading causes of mortality.
Care and treatment of people with dementia
Alzheimer Europe will this year publish its Dementia Monitor 2020 report examining the status of policy and practice, within and between the countries in which we have member organisations.
This includes examining both the availability and affordability of care services within countries, as well as the legal provisions and mechanisms to support people with dementia and their carers. Additionally, the Monitor examines policy and research areas such as national dementia strategies and participation within research projects at a European level.
Alzheimer Europe worked with its national members in gathering this information, particularly in relation to services. Since 2017, the last time Alzheimer Europe carried out this exercise, a mixed picture has emerged in relation to services and support. While there has been an increase in the number of countries reporting that they are sufficiently available, a majority continue to report that most services are insufficiently available or do not exist at all within their countries. The majority of services continue to receive at least some level of funding from the state, in the majority of countries; and most services have shown an increase in those countries where some level of funding is provided.
However, the overall level of services and support for people with dementia remains highly variable across the EU and within countries themselves. In addition, we are aware from our engagement with members and with national governments that diagnosis rates still remain low, even in countries with strong track records on the conditions policy and services. As such, there is a demonstrable need for dementia to be prioritised both at a national and EU level, with a co-ordinated approach to support health systems improve how they diagnose, treat and support people with dementia throughout the course of the illness.
Dementia and COVID-19
The COVID-19 pandemic has had a devastating effect on people with dementia and their carers. From the available data and research (much of which can be found on https://ltccovid.org) and the work of our member organisations, we see that people with dementia and their carers have been more profoundly impacted by the pandemic, including:
- People with dementia accounting for around 20-30% of all COVID-19 deaths;
- Reduced levels of care and support as a result of service closures, such as the cessation of day services;
- Isolation and loneliness of people with dementia, including in residential care facilities where visitation has been severely restricted;
- People with dementia experiencing decline in cognition and greater behavioural and psychological symptoms; and
- Increases in the workload of informal carers, resulting in increased anxiety, stress and exhaustion.
Despite the heightened risk to people with dementia, few countries have specifically addressed the needs of people with dementia or identified them within their ‘at risk’ groups, which would entitle them to additional levels of support.
The pandemic has created news gaps in the provision of health and care services for people with dementia and their carers but has also exacerbated existing and long-standing gaps within health and social care systems.
Future EU action
This is not to say that here has not been any work undertaken at an EU level in recent years in relation to dementia. A number of programmes and projects have been supported, including the Joint Actions on Dementia, as well as EU research programmes which have made vital dementia research projects possible.
Recently, Alzheimer Europe published ‘Dementia as a European priority: a policy overview’, setting out some of the key examples of how the EU institutions have provided political backing to help prioritise dementia in recent years, whilst also identifying remaining challenges that should be addressed within future EU programmes, including EU4Health and Horizon Europe. Furthermore, the report sets out a number of recommendations across the domains of health, research and social policy, including:
- Prioritising dementia in EU research (including Horizon Europe), providing a fair allocation of resources and funding for existing programmes and better co-ordination between programmes;
- Prioritising dementia within policies relating to chronic diseases, mental health and ageing, both at an EU and national level;
- Supporting Member States to work towards the implementation of the World Health Organization’s Global Action Plan on Dementia 2017–2025; and
- Recognising dementia as a disability and including dementia with disability policies.
This work will form the basis of Alzheimer Europe’s public affairs activities in the coming months and years as we continue to push for this serious public health issue to be given the level of attention it deserves.