2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease
Ethics aims to reflect and deliberate on the basic conditions of leading a good life and on responsibilities towards other people: How can we achieve individual and collective wellbeing and flourishing, also under conditions of impairment, disease and disability? How can we ensure that others, especially vulnerable people, are treated well and are respected and supported in living a meaningful life? This is especially relevant in healthcare, as people in need of care are particularly vulnerable. That is why they have rights and are protected by the law. However, laws alone do not guarantee that people in the area of healthcare are adequately supported and treated fairly. Ethical reflection is needed to gain insight into the consequences of (changing) definitions of disease on being diagnosed and offered treatment or care. If a person is diagnosed with a disease, this may enable him/her to receive proper attention by professional caregivers and other people, which may support him/her in living life in a meaningful way. Being diagnosed with Alzheimer’s disease (AD) may make one’s forgetfulness and other possible symptoms understandable and provide a basis for adapting to the situation. However, a diagnosis may also lead to a person being perceived as different from others (as of course can also happen with diagnoses of other medical conditions) and hinder his/her participation in normal life (e.g. perhaps resulting in driving restrictions, which may or may not be justifiable in individual cases, or discrimination in the workplace or with regard to various insurances). Such possible consequences call for ethical reflection and deliberation.
This paper starts with a brief explanation of the recent changes in terminology surrounding Alzheimer’s disease (AD) and AD dementia. This is followed by an exploration of the concepts of health and disease and a call for a critical reflection about terms related to AD in view of their ethical implications and consequences. We then reflect on the possible ethical implications of these changing definitions on the individual and on his/her life and relationships with others. This leads on to a discussion about the potential impact of the changing definitions on diagnosis, treatment and health/social care in terms of needs and provision, followed by a discussion about the ethical implications of the new definitions in the context of research. Finally, we focus on broader societal issues such as citizenship and equal value/opportunities in society and possible implications for politics and policies, as well as for the media and public awareness.
Some degree of detail is necessary to enable readers to understand the concepts we are discussing, the context in which they were developed and the ethical issues we would like to raise. Nevertheless, we have tried to limit the use of scientific jargon to help ensure the accessibility of the document to a broad audience. We have also included a glossary (see section 8) containing straightforward explanations of some of the scientific terms, which may be unfamiliar to some readers.
Last Updated: Friday 10 February 2017