EDEM

ABSTRACT

The main aim of the Ethics in Dementia (EDEM) COST Action is to reduce burnout and moral distress among caregivers and promote the dignity, autonomy, and quality of life of people with dementia.

Dementia is a health challenge on the rise. The overall number of people with dementia in Europe is expected to almost double from 1.57% of the population in 2018, to 3% in 2050. There is no effective treatment for any of the 200 known dementia diseases. It is not possible to halt or reverse the cognitive decline caused by dementia.

This makes care the most important health intervention for people with dementia. However, there are profound ethical difficulties involved in caring for people with dementia. Their gradual cognitive loss complicates retainment of autonomy and agency, and causes a number of ethical care dilemmas, including: balancing safety with freedom, deciding what is in their best interests and recognising that the needs of the person with dementia may sometimes conflict with the needs of others who also deserve consideration. Legal frameworks and guidelines are helpful in guiding practice and decision-making, but they need to be interpreted and applied to specific situations.

EDEM addresses this challenge. By involving a multitude of stakeholders in developing an ethical framework, recommendations and an educational toolkit available for use across Europe, EDEM aims at improving dignity, autonomy and quality of life of people with dementia, as well as reducing burnout and moral distress among caregivers.