More data and awareness needed to fight Alzheimer’s disease, Czech experts say

Experts estimate that the number of people with dementia could be much higher – even 142,000– because there are still people with dementia who were not officially diagnosed with this disease. IHIS has found that 72% of cases are diagnosed. [Shutterstock/perfectlab]

This article is part of our special report Alzheimer’s disease tests EU readiness.

Low public awareness and the fact that many patients consider dementia symptoms as signs of ageing are among the main obstacles of Alzheimer’s disease diagnoses in Czechia. The government has already adopted an action plan aiming for a change.

The number of patients diagnosed with Alzheimer’s disease is constantly rising in Czechia.

According to the Czech Institute of Health Information and Statistics (IHIS), around 102,000 people with diagnosed dementia were living in the country in 2017, while 60% of them were officially diagnosed with Alzheimer disease. 

Experts estimate that the number of people with dementia could be much higher – even 142,000– because there are still people with dementia who were not officially diagnosed with this disease. IHIS has found that 72% of cases are diagnosed.

However, most cases are detected at a later stage when it is too late to offer patients effective treatment and slow down the progression of the disease. 

Despite the alarming numbers, there is still a lack of data about Alzheimer disease in Czechia. 

“We face a lack of information about the incidence, diagnostic processes and we do not know in which phase doctors detect the disease,” said Martina Mátlová, director of the Czech Alzheimer’s Society.

“We know nothing about regional disparities, thus nothing about potential inequalities in healthcare access,” she told EURACTIV.cz.

EU unprepared to tackle Alzheimer’s disease as new treatments progress

European Union countries are still lagging behind in tackling Alzheimer’s disease despite calls by the World Health Organisation for urgent action as cases in the European region are expected to double.

Czech scientists hoping for available blood tests

However, the situation “is improving” when it comes to diagnosis, Mátlová said.

In 2017, the Czech Alzheimer Society joined an EU research project led by non-profit organisation Alzheimer Europe, which focuses on the diagnosis of dementia and experience of informal carers across five European countries: Czechia, Finland, Italy, the Netherlands and Scotland.

“Almost half of the Czech respondents said it would be better to make the diagnoses earlier,” Mátlová noted.

And what are the barriers to earlier diagnoses? According to carers, the main problem is the low awareness about dementia and the fact that many patients consider dementia symptoms as signs of ageing. Moreover, patients are often not willing to find help. 

“We can learn from the UK, the Netherlands or Nordic states. Besides early diagnoses and enhancing public awareness, it is important to provide post-diagnostic support, which is currently insufficient,” said Mátlová. 

Early diagnosis of the disease is vital for potential effective treatment. Czech scientists hope that tests that could detect the disease from blood samples could be available in Europe soon. 

Until then, Czech scientists are trying to improve the diagnostic capacities of general practitioners and pharmacists.

Aleš Bartoš, head of Memory Clinic and Department of Cognitive Disorders at the National Institute of Mental Health, emphasised that Czechia is unique in how it engages pharmacies in Alzheimer’s diagnostic processes. 

“A big advantage is the pharmacy environment,” said Bartoš adding that patients are simply used to go to pharmacies, and they feel more comfortable there than in doctor’s offices.

“Therefore, it is more likely that they will examine their memories there (in pharmacy),” Bartoš explained.

“Pharmacists are professionals who are used to communicate with seniors daily. That’s why patients feel more comfortable, and it is not so stressful for them,” Bartoš added.  

More research, better diagnosis: what France can improve in the fight against Alzheimer

Although associations and scientists are pleased that France has taken up the issue of Alzheimer’s with several consecutive plans, they regret that the momentum has since been lost.

Action plan will support research and carers

In April 2021, the Czech government approved the National Action Plan for Alzheimer’s Disease and Related Illnesses.

According to the Czech Health Ministry, the plan was created in cooperation with the Labour and Social Affairs Ministry in response to the increasing prevalence of dementia.

The plan for the period 2020-2030 should also react to the need to actively support education and availability of early diagnosis and health and social support for people living with dementia and their carers.

“The main shortcoming is the low level of awareness in the general population, as well as the low availability of educational programmes focused on dementia for non-medical professions, but especially for informal carers,” the document reads.  

The plan contains specific measures, such as establishing a permanent position of National Coordinator for Dementia.

It also includes pilot studies on risks factors, including the creation of a network of monitoring centres to gather data about risks faced by people living with dementia – for example, monitoring escapes from home.

New technologies like automatic reminders of medication use that could help people with dementia will also be supported.

A new online portal will be established together with a campaign to raise awareness about Alzheimer disease. The portal will serve as a source of information to various target groups, including general practitioners, social workers or carers. 

The Czech health ministry told EURACTIV.cz that the implementation of the plan is expected to cost €25 million.

However, there is no dedicated budget associated with the plan. “Funding will initially be dealt with on a project basis,” the ministry said. 

Germany urged to boost early testing to tackle Alzheimer’s disease

Germany has already launched numerous initiatives to combat Alzheimer’s disease but needs to catch up in early detection, which could become essential for future medical treatment, researchers and medical experts told EURACTIV.de.

[Edited by Frédéric Simon]

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