Ethical values in dementia care reveal shared principles – but also differences across the EU

Which values shape decision-making when EU countries develop plans for how people with dementia should be met, treated, and supported? Do concepts such as dignity, autonomy, justice, equality, and participation play a central role – and are these concepts understood in the same way across countries?

An international team of researchers has analysed the official national dementia strategies of 17 EU countries, adopted by national governments or parliaments. The study maps which ethical principles are included, how they are described, and how much emphasis they are given.

The study has just been published in the scientific journal Journal of Aging & Social Policy and is the first to examine how international ethical recommendations on dementia are translated into concrete policy across the EU.

Researchers from the Danish National Institute of Public Health are leading the study.

“Dementia strategies play a major role in shaping how people with dementia and their relatives are met within the healthcare system and society more broadly. If values such as dignity, autonomy, and equal access are only mentioned in broad terms – but understood differently or not translated into practice – this may have consequences for both the quality of care and people’s rights,” says Frederik Schou-Juul, Assistant Professor at the Danish National Institute of Public Health.

The aim of the study is to provide policymakers, civil servants, and organisations working in the field of dementia with an overview of where values are shared across Europe and where there is disagreement or lack of clarity.

Emphasised in different ways

The study concludes that ethics play a prominent role in European dementia strategies – but in very different ways. Almost all countries highlight values such as person-centred care, dignity, and autonomy.

According to the researchers, this reflects a shared ambition to view people with dementia as whole persons with rights, preferences, and lives of value.

“However, a closer look shows that the same terms do not mean the same thing from one country to another. In some strategies, ethical values are used in very general terms as guiding principles or visions, without clearly specifying how they should be translated into practice,” explains Frederik Schou-Juul.

In other strategies, fewer values are articulated, but they are described more precisely and more clearly linked to concrete actions and the organisation of services.

Lack of a common foundation

The study also points to a lack of a shared European foundation regarding which ethical principles should carry the greatest weight and how they should be balanced when resources in dementia care are limited and ethical dilemmas arise.

“In practice, this may make it difficult to ensure that people with dementia are met with the same basic respect and rights regardless of which country they live in,” Frederik Schou-Juul notes.

He believes the study can serve as a basis for developing clearer, more coherent, and more rights-based dementia strategies, both nationally and across countries.

An important point, however, is that Europe may not necessarily need a single, common hierarchy of ethical principles in dementia policy, as ethics are often closely tied to culture and context.

“Nevertheless, the study can be used to map and compare how ethical principles are actually interpreted and prioritised across national dementia strategies, thereby highlighting blind spots and opportunities for greater coherence in future strategies or guidelines,” says Frederik Schou-Juul.

In total, 22 researchers from a wide range of European countries contributed to the study.

Contact: Assistant Professor Frederik Schou-Juul, Phone: +45 6550 7747, Email: fsch@sdu.dk, Danish National Institute of Public Health, SDU