Guest blog: New research study on making treatment decisions in MND

The study aims to better understand the difficulties that people with MND may experience when making decisions about their care.

Dr Milena Contreras shares how she became an MND researcher and tells us about her new MND Scotland funded study, designed to help better understand how people living with MND make treatment decisions.

About me

My name is Milena Contreras and I am a psychologist and postdoctoral researcher working at the University of Edinburgh. I am originally from Argentina, where I qualified as a psychologist in 2015, and since then I have been studying and living in different cities and countries. I did my MSc in Spain, where I also worked at a care home for people living with dementia and after that, I moved to London where I worked at another care home. In 2018, I moved to Norwich, where I started my PhD in dementia care at the University of East Anglia. Following this tradition of progressively moving to even colder places, I moved up to Edinburgh after finishing my PhD studies and have been working at the University of Edinburgh since September 2021.

My previous experiences working at care homes made me passionate about working with people living with neurodegenerative diseases and their families. While working on my PhD, my research colleagues sparked my interest in MND, especially the changes in thinking and behaviour which some people may experience. I want to use my clinical and research skills to improve the lives of people affected by MND, and I’m honoured to have the opportunity to work at the University of Edinburgh, which is a centre of excellence for MND research in the UK.

My project

Along with Professor Sharon Abrahams, who developed the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), we are conducting a new research study funded by MND Scotland to understand how people living with MND make treatment decisions.

We know from previous studies that some people living with MND might experience changes in their thinking and behaviour. These changes may include difficulties with planning, organisation and making decisions. However, it is currently unknown whether these could have an impact on the decisions a person makes in their choice of medical interventions and care. We therefore want to explore if the decision-making process involved in consenting to medical treatments is affected in some people living with MND. By understanding the difficulties that some people with MND may experience when making decisions about their care, we may be able to identify the types of support that would be helpful to them.

Get involved

The project started in 2021, and we will recruit 60 people with MND and 60 without MND. The study involves being interviewed by the researcher either via a video call or face-to-face at home or at the University of Edinburgh.

If you are interested in taking part or would like to receive more information please contact Dr Milena Contreras, at m.contreras@ed.ac.uk or 07796 98427.