Ethical difficulties in dementia care

This year’s Dementia Awareness Week will run from Monday 15 May to Sunday 21 May 2023. This dedicated week aims to help improve the lives of people living with dementia and their families. In this context, COST focuses on the ethical issues 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 function with impairment of two or more cognitive domains”.

Dementia is a range of progressive neurological conditions that affect cognitive function, behavior and ability to perform daily activities. As the disease progresses, people with dementia may experience stigma, loss of autonomy and decision-making capacity, which can raise ethical issues related to care.

Additionally, the term “dementia” is used to describe a person’s experience. This means that each person’s background, physical health, social situation, and personality are unique. It is therefore important to emphasize this not only through the lens of neuropathy.

The World Health Organization reports that approximately 55 million people worldwide have dementia, with 10 million new cases occurring each year.

Europe’s aging population is increasing, meaning that the total number of people with dementia is likely to continue to grow significantly in the future. Dementia is now the seventh leading cause of death and one of the leading causes of disability and dependence among older people worldwide.

there is still no cure

Dementia is on the rise as a health challenge. Currently, there are no effective treatments for neurodegeneration in dementia. Cognitive decline due to dementia cannot be stopped or reversed. Because of these unresolved issues, care and support are currently the most important health interventions for people with dementia.

However, serious ethical issues remain when caring for people with dementia. Progressive cognitive loss makes it difficult to maintain autonomy and poses many ethical care dilemmas. It involves balancing safety and freedom, determining what is in the person’s best interests, and how the needs of people with dementia can sometimes conflict with those of others who are equally worthy of consideration. It includes recognizing that there is a

Legal frameworks and guidelines can serve as a guide for practice and decision-making, but must be interpreted and applied to specific situations.

The European Union has taken a number of actions in recent years to support people with dementia, highlighting the need to discuss dilemmas in dementia care ethically. This was taken up by the European Commission’s Alzheimer’s Disease Initiative. Common considerations on dementia ethics were highlighted as one of the priority areas for European cooperation.

Ethics in dementia

Ethics in dementia raises the question of how we refer to the principles and values ​​that guide the decision-making of individuals with dementia, their families, and the health professionals who care for them.

This initiative will help raise awareness of dementia and provide practical guidance to policy makers in developing and implementing strategies. The Collaborative Research Center also publishes an overview of dementia through the Health Promotion and Disease Prevention Knowledge Gateway. It is a reference point for public health policymakers that provides authoritative, independent and up-to-date information on topics relevant to promoting health and well-being. .

However, there is little homogeneity or uniformity within the European care system on how ethical issues in dementia care are addressed. Existing efforts in implementing country strategies are concentrated in non-Central and Eastern European countries. Unfortunately, some countries do not yet have dementia plans.

Caregivers and health professionals lack the tools and skills to advance these areas on a scientific basis. Therefore, there is a significant need to mobilize researchers to develop new and universally applicable approaches.

INTRODUCING EDEM COST ACTION: EXPLORE NEW DIMENSIONS

A collaborative network of researchers has explored this issue and created a COST action called Ethics in Dementia (EDEM). This network explores ethical issues in dementia care in various settings in Europe and highlights the importance of mapping principles to address these issues within an ethical framework. EDEM brings together a network of cross-border experts around the world to open dialogue and debate among stakeholders to explore new dimensions.

EDEM represents significant progress in promoting ethical and inclusive environments and care homes, as well as dementia-friendly initiatives that can help overcome challenges faced by people with dementia and their families. . Investigate core needs and develop ethical frameworks and educational tools to address them. “

Dr. Sigurd Mørk Rønbøl Lauridsen, EDEM Action Chair

EDEM differs in scope and organization from existing networks and institutions such as Alzheimer’s Europe, Alzheimer’s Disease International, Interdem, Hastings Center and Nuffield Bioethics Council. Their scope is to focus solely on ethical issues in dementia care, not through the lens of pharmaceuticals, biomedical research, or psychosocial interventions.

The EDEM network aims to reduce caregiver burnout and emotional distress and promote dignity, autonomy and quality of life for people with dementia. This new network adds relevant value to existing efforts by encouraging stakeholder involvement in the development of ethical frameworks and recommendations. It intends to provide an educational toolkit that can be used across Europe for formal and informal caregivers.

Ethical issues related to dementia are difficult to address. To navigate complex ethical issues, it is important to have open and honest communication between healthcare professionals, families and people with dementia whenever possible.

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