This year Dementia Awareness Week is running from Monday 15 until Sunday the 21 of May 2023. This dedicated week aims to help improving the lives of people with dementia and their families. In this context COST looks at ethical difficulties surrounding this condition.
The International Classification of Diseases defines dementia as “an acquired brain syndrome characterised by a decline from a previous level of cognitive functioning with impairment in two or more cognitive domains”.
Dementia is a set of progressive neurological condition that affects cognitive function, behaviour, and the ability to carry out daily activities. As the disease progresses, individuals with dementia may experience, stigma, loss of autonomy and decision-making capacity, which can raise ethical issues related to their care.
In addition, the term ‘dementia ‘is used to describe a person’s experience. This means that each person is unique, the biography, the physical health, the social circumstances and the personality. It is, therefore, important to highlight this not just through the lens of a neurological impairment.
The World Health Organization reports that about 55 million people worldwide live with dementia, with 10 million new cases per year.
The increasing ageing population of Europe means that the overall 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 major causes of disability and dependency among older people globally.
Still no treatment to date
Dementia is a health challenge on the rise. There is currently no effective treatment for the neurodegeneration of dementia. It is not possible to halt or reverse the cognitive decline caused by dementia. Due to these unresolved issues, care and support is the most important health intervention for people with dementia at this time.
However, profound ethical difficulties remain when taking care of people with dementia. Progressive cognitive loss makes it difficult to maintain autonomy and causes a number of ethical care dilemmas. It includes: 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.
The European Union has undertaken a number of actions in support of people with dementia in recent years, emphasizing the need for ethical discussion of dilemmas in dementia care. It was taken up by the European Commission’s Alzheimer’s initiative. A common reflection on dementia ethics was highlighted as one of the priority areas for European collaboration.
Ethics in dementia
Ethics in dementia raises questions on how to refer to the principles and values that guide decision-making for individuals with dementia and their families, as well as the healthcare professionals who care for them.
Initiatives help raising the profile of dementia and provide practical guidance for policymakers developing and implementing strategies. The Joint Research Centre has also published a dementia overview through the Health Promotion and Disease Prevention Knowledge Gateway – a reference point for public health policy makers with reliable, independent and up-to date information on topics related to the promotion of health and well-being.
However, there is little homogeneity and uniformity within the European system of care as to how to address ethical problems in dementia care. Existing efforts in implementation of country-specific-strategies are centred in non-Central and Eastern European Countries. Woefully, in some countries no dementia plan is available yet.
Caregivers and healthcare professional lack tools and skills to further these areas on a scientific basis. Therefore, there is a noticeable need to mobilise researchers to develop new and universally applicable approaches.
Introducing EDEM COST Action: to explore new dimensions
A collaborative network of researchers has looked into this question and have created a COST Action called Ethics in Dementia (EDEM). This network is exploring ethical problems in dementia care in different European contexts, which highlights the importance of mapping principles to address these problems within an ethical framework. EDEM has put together a network of cross-national professionals across the world to open dialogue and discussion among stakeholders to explore new dimensions.
“EDEM represents a significant step forward in promoting ethical and inclusive environments and care facilities, as well as dementia-friendly initiatives that can support individuals with dementia and their families in overcoming the challenges they face, This we will do by, among other things, identifying core needs and developing ethical frameworks and educational tools to address them.”
Dr Sigurd Mørk Rønbøl Lauridsen, EDEM Action Chair
EDEM differs in scope and organisation from existing networks and institutions like 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 dementia care and not through the lens of pharmaceutical, biomedical research or psychosocial intervention.
The EDEM network aims to reduce burnout and moral distress among caregivers and promote the dignity, autonomy, and quality of life of people with dementia. This new network will add value in relation to existing efforts by encouraging stakeholder involvement in developing an ethical framework, and recommendations. It will provide an educational toolkit available for use across Europe for formal and informal caregivers.
Dealing with ethical issues related to dementia is a challenge. It is important to have open and honest communication among healthcare professionals, family members, and the person with dementia when possible to help navigate complex ethical issues.
This Action aims to promote ethical dementia care by identifying ethical problems in dementia care in different European contexts and settings. This will foster broad knowledge exchange across the network and Europe in general.
Additional information
If you are interested in the work of the EDEM Action and want to know more there is an open call for applications to participate in the EDEM Training School on Ethics in Dementia that takes place in Lithuania on the 21 and 22 of September. Deadline for applications is the 20 of May. Learn more about the Training School here.