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Professor Sharon Abrahams has received funding from the Motor Neurone Disease Association to investigate how cognitive impairments and behavioural change may affect decision-making capacity in some people living with MND.
Up to 50% of people with MND experience changes in cognition and/or behaviour, which in some can have a significant impact on everyday life, including decision-making.
Assisted dying is legal in several European countries, a number of states in the USA, Jersey and the Isle of Man, and was recently debated in Scottish and UK parliaments. This research will determine whether these cognitive changes might affect decision making over this important issue.
The project will also investigate the thoughts and attitudes of people with lived experience of MND (people living with the disease and caregivers), and healthcare professionals toward assisted dying. It will examine factors that may influence these views, including personal experience and moral and religious beliefs. The study will also include the development of an ethical model specific to the needs and interests of people with lived experience of MND.
The findings will help inform government policy, clinical guidelines, and professional practice, supporting patients and families in navigating this complex and sensitive issue and ultimately help people with MND maintain autonomy in any decision. The information gathered will also provide important insight into decision-making on other aspects of disease management.
Sharon Abrahams is a Professor of Neuropsychology and founding member of the Euan MacDonald Centre, and a leading researcher in the cognition in people with MND. She is a practising clinical neuropsychologist, based in the Psychology Department at the University of Edinburgh.
Together with colleagues in the Euan MacDonald Centre (Dr Thomas Bak and Judith Newton), she developed a standardised cognitive assessment for MND, the Edinburgh Cognitive and Behavioural ALS Screen (ECAS). This is a brief assessment tool designed to detect changes in cognition and behaviour in MND and which is now routinely used internationally, translated into 28 languages and incorporated as an outcome measure in clinical trials. The work of her team has helped shape clinical practice through her role as a co-opted member of the NICE MND Guidelines Committee.
The project is conducted in collaboration with Professor Ammar Al-Chalabi (King’s College London, UK), Professor Zach Simmons (Pennsylvania State University, USA), and Professor Michael Cholbi (University of Edinburgh).
Dr Mario Amore Cecchini, a postdoctoral researcher, will run the project. He will be in charge of implementing the project, collecting data and reporting the results. Mario is a psychology researcher with expertise in cognitive and behavioural changes associated with ageing and different neurodegenerative conditions. He also has more than 10 years of experience as a clinical neuropsychologist.
Dr Milena Contreras, now based at King’s College Hospital, will also be collecting data at the London site. She has been working with people with MND for several years and undertook her post-doctoral work with Professor Abrahams investigating decision-making over consent to a feeding tube (gastrostomy).
Relevant links
Profile for Prof Sharon Abrahams
MND Association funding article (external website)
Edinburgh Cognitive and Behavioural ALS Screen (external website)
Profile for Dr Mario Amore Cecchini (external website)
Profile for Dr Milena Contreras (external website)