Ethical difficulties in the care of dementia

This year, Dementia Awareness Week runs from Monday May 15 to Sunday May 21, 2023. This dedicated week aims to help improve the lives of people with dementia and their families. In this context, COST examines the ethical difficulties surrounding this condition.

The International Classification of Diseases defines dementia as “an acquired brain syndrome characterized by a decline from a previous level of cognitive functioning with impairment in two or more cognitive domains”.

Dementia is a collection of progressive neurological disorders that affect cognitive function, behavior and the ability to carry out daily activities. As the disease progresses, people with dementia may experience stigma, loss of autonomy and decision-making capacity, which may raise ethical questions related to their care.

Additionally, the term “dementia” is used to describe a person’s experience. This means that each person is unique, biography, physical health, social circumstances and personality. It is therefore important to highlight this not only through the prism of neurological impairment.

The World Health Organization reports that approximately 55 million people worldwide are living with dementia, with 10 million new cases per year.

The increasing aging of the European population means that the total number of people with dementia is likely to continue to increase significantly. Dementia is currently the seventh leading cause of death and one of the leading causes of disability and dependency among older people worldwide.

Still no treatment to date

Dementia is a growing health problem. There is currently no effective treatment for the neurodegeneration of dementia. It is not possible to stop or reverse the cognitive decline caused by dementia. Because of these unresolved issues, care and support is currently the most important health intervention for people with dementia.

However, profound ethical difficulties remain in the care of people with dementia. Progressive cognitive loss makes it difficult to maintain autonomy and leads to a number of ethical dilemmas in caregiving. This includes: balancing safety and freedom, deciding what is in their best interests, and recognizing that the needs of the person with dementia can sometimes conflict with the needs of others who also deserve consideration.

Legal frameworks and guidelines are useful for guiding practice and decision-making, but they must be interpreted and applied to specific situations.

The European Union has undertaken a number of actions in favor of people with dementia in recent years, highlighting the need for an ethical discussion of the dilemmas in the care of people with dementia. It has been taken up by the Alzheimer’s initiative of the European Commission. Common reflection on the ethics of dementia was highlighted as one of the priority areas for European collaboration.

Ethics in dementia

Ethics in dementia raises questions about how to refer to the principles and values ​​that guide decision-making for people with dementia and their families, as well as the healthcare professionals who care for them.

The initiatives help raise the profile of dementia and provide practical guidance to policy makers developing and implementing strategies. The Joint Research Center has also published an overview of dementia via the Health Promotion and Disease Prevention Knowledge Gateway – a point of reference for public health decision-makers with reliable, independent and up-to-date information on topics related to dementia. promotion of health and well-being.

However, there is little homogeneity and uniformity across the European healthcare system in how to address ethical issues in the care of people with dementia. Current efforts to implement country-specific strategies are focused on non-Central and Eastern European countries. Unfortunately, in some countries, no dementia plan is yet available.

Caregivers and health professionals lack the tools and skills to delve into these areas on a scientific basis. Therefore, it is necessary to mobilize researchers to develop new universally applicable approaches.

Presentation of the EDEM COST action: to explore new dimensions

A collaborative network of researchers addressed this issue and created a COST action called Ethics in Dementia (EDEM). This network explores the ethical issues of dementia care in different European contexts, highlighting the importance of mapping principles to address these issues within an ethical framework. EDEM has set up a network of international professionals around the world to open dialogue and discussion between stakeholders in order to explore new dimensions.

EDEM represents a significant step forward in promoting ethical and inclusive care environments and facilities, as well as dementia-friendly initiatives that can help people with dementia and their families overcome the challenges they face. confronted. We will do this, among other things, by identifying basic needs and developing ethical frameworks and educational tools to meet them. »

Dr Sigurd Mørk Rønbøl Lauridsen, president of the EDEM action

EDEM differs in scope and organization from existing networks and institutions such as Alzheimer Europe, Alzheimer´s Disease International, Interdem, The Hastings Center or The Nuffield Council on Bioethics. Their scope is to focus exclusively on ethical issues in the care of people with dementia and not through the prism of pharmaceutical, biomedical research or psychosocial intervention.

The EDEM network aims to reduce the burnout and moral distress of caregivers and to promote the dignity, autonomy and quality of life of people with dementia. This new network will add value to existing efforts by encouraging the involvement of stakeholders in the development of an ethical framework and recommendations. It will provide an educational toolkit available for use across Europe for formal and informal carers.

Dealing with ethical issues related to dementia is a challenge. It is important to have open and honest communication between healthcare professionals, family members and the person with dementia when possible to help resolve complex ethical issues.

This action aims to promote the ethical care of dementia by identifying the ethical issues related to the care of dementia in different European contexts and environments. This will promote a broad exchange of knowledge across the network and Europe in general.