2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
Recent and ongoing developments in the field of science into the causes and development of Alzheimer’s disease (AD) have led to new ways of understanding this condition. Over the last decade, researchers have been developing a new model of AD and gaining knowledge about the role of various biomarkers in the disease process. They now suggest that AD should be considered as a continuum, ranging from an at risk state through to a dementia state. We congratulate the researchers involved in these scientific developments, as well as the participants and the funders, who have made this research possible. In so doing, they have contributed towards greater precision and clarity in identifiying people’s possible relationship to AD, especially in terms of underlying pathological changes and the likelihood of developing AD dementia. We welcome continued work towards a better understanding of AD, resulting in the possibility of preventive measures, effective treatments and good quality care.
The aim of this discussion paper was to reflect on the ethical implications of the new AD model and the definitions associated with it to try to ensure that these definitions have a positive impact on people who already have or may later have AD, that their rights and wellbeing are promoted and that broader society ensures that they are adequately supported, fully respected and fairly treated. In the position below we have summarised some of the key issues which we feel are important and should be addressed.
- Careful consideration should be paid to the possible social, psychological and practical impact of the new definitions of AD on personal identity, relationships and citizenship (e.g. in relation to personhood, dignity, social exclusion, discrimination and/or stigma). Every effort should be made to prevent any negative impact by attention to the words used, the stance taken by researchers themselves and by encouraging positive social attitudes
- Research should be carried out into the possible impact of the new definitions and to understand better how lay people and healthcare professionals understand the terminology surrounding the new model of AD.
- When assessing potential benefits of diagnosing what is currently defined as prodromal AD (IWG) or MCI due to AD (NIA-AA), there should be a focus on issues which are of relevance to patients.
- Politicians, the media and the general public should be provided with information about the new definitions and the new AD model to promote informed debate, avoid creating or perpetuating stigma and contribute towards more inclusive attitudes towards people with AD.
- Efforts should be continued to reduce negative stereotyping (i.e. which focuses on very advanced symptoms and on an absence of quality of life) of AD dementia.
- There should be an open and informed public debate about the prioritisation and public funding of research, treatment, care and support.
- People with AD (including those who do and do not have dementia) should be given a voice in the abovementioned debate. Alzheimer Europe, national Alzheimer associations and working groups of people with dementia need to consider how to ensure that this happens.
- The findings of such research should be used to develop awareness-raising programmes targeted at the general public and appropriate educational and communication materials to be used by healthcare professionals and researchers when communicating with patients and research participants.
- Policies and legislation should be developed to ensure the protection of the rights of people with AD (e.g. in relation to confidentiality, decision making, access to service and support and discrimination) to ensure that they can continue to play an active role in society and remain valued citizens and members of their communities.
- Careful attention should be paid by researchers to terminology surrounding what is currently defined as pre-clinical AD and to its possible impact on research participants and the general public. For example:
- Researchers should use the term “disclosure of risk status” rather than “diagnosis”, and “people” or “participants” rather than “patients” in all communication with research participants who are classified as asymptomatic, at risk for AD. This may change in the future if, with increasing knowledge, the at-risk state comes to be more clearly linked to the future disease state (as is the case with pre-symptomatic AD).
- People classified as being in the asymptomatic, at-risk-for-AD group should be described as being at risk of AD rather than as having pre-clinical AD.
Last Updated: Friday 10 February 2017