WHO: “The impact of dementia on caregivers, family and societies can be physical, psychological, social and economic.” [Neil Moralee / Flickr]
This article is part of our special report Is Europe ready for Alzheimer’s?.
The European Union is stepping up efforts to combat dementia, but is being urged to do more, as 18.7 million EU citizens are expected to suffer from the illness by 2050.
The World Health Organisation (WHO) says dementia develops slowly and is caused by a variety of diseases and injuries that affect the brain, such as Alzheimer’s disease, and strokes.
Alzheimer’s is a type of dementia that causes problems with memory, thinking and behaviour. Symptoms usually develop slowly and get worse over time, becoming severe enough to hamper individuals from performing everyday activities. However, consciousness is not affected.
Practically, patients with dementia have an increased level of dependency.
“The impact of dementia on caregivers, family and societies can be physical, psychological, social and economic,” the WHO notes.
Policymakers emphasise there is often a lack of awareness and understanding of dementia, resulting in stigmatisation and barriers to diagnosis and care. They are calling for global action.
Another aspect of dementia is its high cost. According to a 2015 report by Alzheimer’s Disease International (ADI), the total estimated cost of dementia in 2015 was €750 billion and projections forecast that it could reach €1.83 trillion by 2018.
Dementia in the EU
In 2015, the number of people with dementia was approximately 10.5 million in Europe. The projections are alarming, as the number of affected people is predicted to increase to 13.4 million by 2030 and to 18.7 million by 2050.
According to the European Commission, the most common causes of dementia in the EU is Alzheimer’s disease (about 50-70% of cases) and the successive strokes which lead to multi-infarct dementia (about 30%). Other causes are Pick’s disease, Binswanger’s diseases, Lewy-Body dementia, and others.
Member states are responsible for the organisation and delivery of health services, including care for dementia. In December 2015, the EU Council of Ministers adopted a policy framework to help people living with dementia by improving care policies and practices.
Several member states have already adopted a national strategy to address the situation.
In an interview with euractiv.com, the Director of Alzheimer Europe, Jean Georges, stressed that the number of countries with such plans in place has continued to grow. There are now dementia or neurodegenerative disease strategies in place in Austria, Belgium, Cyprus, Czech Republic, Denmark, Greece, Ireland, Italy, Luxembourg, Malta, the Netherlands, Norway, Slovenia, Spain, Switzerland and the UK (with separate strategies for England, Northern Ireland and Scotland).
However, there is still much to do to fully implement plans, and in many countries, to put a plan in place, analysts explain.
EU Commission action plan
European Commission spokesman Enrico Brivio told euractiv.com that in recent years dementia has become a priority for more and more member states.
There is a huge investment in research on dementia and other neurodegenerative diseases under the EU research programs, he said.
“The interest of the topic for member states is also manifested during the Presidency of the Council of the European Union,” the official stressed, adding that the Commission works closely with the member states through the Group of Governmental experts on Dementias.
“The support for the implementation of the Council conclusions will be discussed in cooperation with the member states,” he stated.
The executive also supports work to address dementia by supporting member states via the EU Health Programme.
Following the completion of the first Joint Action on Dementia (ALCOVE Joint Action), a second Joint Action on dementia under the EU-Health Programme was launched in March 2016. The initiative focuses on post-diagnostic support, crisis and care coordination, and the quality of residential care and dementia-friendly communities.
Brivio said there was huge investment in research on dementia and other neurodegenerative diseases under the EU research programs.
“The Commission further supports the European Innovation Partnership on Active and Healthy Ageing, which is facilitating the exchange of good practices in prevention of frailty, integration of care and age-friendly environments, areas which highlight the importance of early diagnosis and screening for physical and cognitive decline, coordination of health and social care and support to patients and carers,” Brivio said.
Nurses: Commission is out of touch
Contacted by EURACTIV, the European Federation of Nurses Associations (ENF) said the Commission’s planned joint action with member states on dementia excluded stakeholders like the ENF.
“They miss out 3 million nurses,” said Paul De Raeve, the EFN’s general secretary. “Iit is high time the European Commission respects frontline actors, dealing every day with dementia.”
According to De Raeve, EU politicians write policies but they have never seen or taken care of a dementia patient in real life. This is visible in EU Council recommendations, which he said includes empty sentences and contains no concrete actions to take account of the experience of frontline people working and caring for dementia patients.
“Look at Horizon2020. Millions are spent on dementia, nothing changes in daily practice. What about implementing the research findings?” he asked.
The WHO also focuses on the impact of caregiving, such as the deterioration of the caretaker’s physical and mental health and lost productivity when carers are forced to abstain from work.
In 2010, informal care costs stood at roughly at €230 billion, according to the WHO, which claims that “e-health” solutions could be effective.
I-Support is an e-programme that the WHO is currently developing with the goal of supporting family members and friends taking care of people living with dementia.
Available via personal computers, tablets and smartphones, iSupport offers a training program through which caregivers learn about the basics of dementia, how to take on their role, how to cope with the emotional stress associated with caregiving, and the importance of self-care.
Special attention is also paid to challenging behaviours associated with dementia, such as aggression, depression, and wandering.