2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
The new definitions of AD imply a continuum, starting with a preclinical phase, in which biomarkers indicate the disease, passing through a second phase of prodromal AD (IWG) or MCI due to AD (NIA-AA) and leading to a third phase of AD dementia. These definitions have been developed in a research context with the aim of being used in research for preclinical AD and in clinical practice for MCI due to and AD dementia, but they also have relevance for diagnosis, treatment and societal views of AD. In this paper, we focused on ethical aspects of the new definitions in all these domains. Three issues stand out.
First, the new definitions may give rise to new societal views on AD. As more and younger people will be diagnosed with (early stages of) AD, the current stigma related to dementia may gradually diminish. However, it is also possible that the stigma might remain and be extended to more people, influencing their self-esteem and possibilities for social participation. Such problematic aspects of the new definitions should be investigated and possible negative consequences should be addressed by actively promoting counter-frames and counter-stories. The changing definitions of AD call for reflection and action by individuals and societies (e.g. restrictive confidentiality regulations regarding disclosure of AD) to ensure that people with AD are empowered as citizens, equally valued and have the same opportunities as other members of society.
Second, the new definitions may lead to shifts in research and care. Policy makers have an important role to play in helping ensure that the focus on biomedical research into the early stages of AD does not jeopardise social science research aimed at improving the quality of life of people with AD dementia. The focus on people in an early stage of AD may also lead to less attention being paid to improving care for people in the dementia stage. This raises questions concerning the fair distribution of resources in health care and social care. On the other hand, if AD dementia can eventually be prevented or its onset delayed, this would have an impact on the availability of funds for care as well as for prevention. Researchers are currently exploring the socio-economic implications of a possible preventive measure for AD dementia. Meanwhile, polices are needed to promote an equal distribution of research funding and care provision between various socio-economic groups, at national level and between countries worldwide. Research and care must meet the needs of all people with AD.
Finally, the previous definition of AD was linked to some degree of uncertainty, but the new definitions also give rise to possible uncertainties and misunderstandings. People who are asked to participate in research, because biomarkers show they have the first or second phase of AD, may not be able to completely grasp the situation. They may think they have dementia, or will certainly develop dementia, whereas they are in fact merely at risk. This may hamper informed consent, which is a prerequisite for ethical research. Similar misunderstandings may arise in the clinical setting, leading to less than fully informed decisions being made by patients which are not fully informed . In order to deal with these ethical challenges, the importance of pre-diagnostic counselling and post-diagnostic support must be recognised. In addition, every effort must be made to train researchers and healthcare professionals and explain the new definitions to other members of society.
In sum, the new definitions of AD are not ethically neutral. Although they promise research developments which will be positive for people with AD and hopefully lead to a reduction in the number of people with AD dementia, the possible negative aspects, such as misunderstanding, unfair distribution of resources, and stigmatisation, require full attention and action, in order to really improve the lives of people with AD.
Last Updated: Friday 10 February 2017