Ethical issues around the language used to talk about Alzheimer’s disease

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With an increasing global effort and collaboration in developing new treatments and a better understanding of Alzheimer’s disease, it is pertinent to link the progress made in research to how communication around Alzheimer’s disease has evolved alongside the science. As the Centre for Dementia Prevention prepares to open new clinical trials reaching an even greater number of people, we appreciate the nuance of communicating risk status to our trial participants as well as patients in a clinical setting. We are delighted to have contributed our expertise to a new discussion paper debating the ethical issues around the language used to talk about Alzheimer’s disease.

A change in conducting research in Alzheimer’s disease

The paper by Alzheimer’s Europe was co-authored by a multi-disciplinary team of experts in Alzheimer’s research. One of the authors of the paper, a Clinical Research Fellow at the Centre for Dementia Prevention, Dr Hinesh Topiwala (pictured) explains that this discussion paper helps make the new definitions of Alzheimer’s disease more accessible to people from all walks of life including the general public, media and policy makers. Alzheimer’s disease research has evolved greatly from 1906 when Alois Alzheimer first described the condition. We now no longer refer to the disease as something that occurs at a single point in time but view the changes taking place in the brain as a continuum where the very first changes precede the onset of memory problems by decades but do not manifest clinically. Over the years, the description and diagnostic criteria of Alzheimer’s disease has increasingly started relying on biological markers (such as proteins in the cerebrospinal fluid) and MRI brain scans rather than mere clinical manifestation. As such, clinical trials and research has also adapted to the new knowledge of the disease development. The resulting shift in research from primarily involving patients who already experience memory problems to going further back on the continuum by including a preclinical population (an outwardly healthy population of people who may be at risk of developing dementia) has created a need to revise the ethics of conducting clinical trials in Alzheimer’s disease. The most innovative clinical trials in Alzheimer’s disease (such as the PREVENT research programme and the European Prevention of Alzheimer’s Dementia) focus on earlier stages of the disease and will see participants on a longer trajectory.

Applying ethical principles into practice

While the Centre for Dementia Prevention focuses on delivering trials using the latest understanding in disease modeling, there is a huge emphasis on exploring the ethical, legal and social implications when conducting research in Alzheimer’s disease by taking into account the current knowledge of disease continuum. The European Prevention of Alzheimer’s Dementia (EPAD) study, led from the Centre for Dementia Prevention, dedicates a significant amount of work to the ethical challenges in designing research, collecting data from participants and disclosing risk status when developing drugs. Dr Richard Milne emphasised in his talk at the recent Alzheimer’s Europe conference that instead of typical symptoms of Alzheimer’s disease like dementia – Alzheimer’s disease has become defined as a biological continuum mapped by biological markers. In turn this continuum is broken down by distinct stages e.g. preclinical or asymptomatic at risk Alzheimer’s disease, prodromal Alzheimer’s disease, mild cognitive impairment and Alzheimer’s dementia. Richard highlights that in discussing treatment regimen and genetic testing, ethical challenges associated with Alzheimer’s disease research evolve and change alongside the science. And while questions of informed consent and capacity are as important as during the earlier stages of Alzheimer’s research, ethics of clinical trials now encompasses a broader range of questions.

Progressing science by generating a better understanding of terminology

The Alzheimer’s Europe discussion paper on ethical issues around the use of language and terminology that scientists, clinicians and the public use in the light of the progress made in research, conclude that it is important that we are all aware of the possible ethical implications of the changing definitions at the level of the individual, communities and wider society. Hinesh emphasises that careful attention should be paid to the possible social, psychological and practical impact of the new definitions of Alzheimer’s disease. Hinesh concludes that he is hopeful that we, as a society, will all continue to contribute towards Alzheimer’s disease research, resulting in the possibility of preventative measures, effective treatments and good quality care.

Finally, our ability to understand the development of Alzheimer’s disease has been made possible by conducting studies with thousands of volunteers – patients with dementia as well as healthy participants donating their time for research. This is a huge contribution by trial participants, shared so kindly by our Centre’s volunteers. We are grateful our trial participants remain in our studies and devote their time generously, as well as new volunteers continuing to express an interest in getting involved with dementia research. The ethics paper concludes that authors are hopeful that the knowledge gained so far will lead to advancements in the treatment, care and support of people with Alzheimer’s disease and eventually to delaying or preventing the onset of Alzheimer’s dementia.

Alzheimer Europe Reports. (2016). Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease.