Apathy in MND

This project will investigate the real-life impact of specific types of apathy on people living with MND, and their families.

Background

As the most prevalent and debilitating behavioural symptom for people living with MND, apathy is a lack of motivation that can affect people in three areas:

  • being unmotivated to plan/organise/attend to finishing tasks
  • lack of motivation in thinking of new ideas
  • being emotionally indifferent or neutral to what is going on around them.

Ratko and Prof Sharon Abrahams at the University of Edinburgh have developed the Dimensional Apathy Scale (DAS), which assesses these different types of apathy independent of physical disability. They have also shown that some people living with MND show a characteristic lack of motivation for thinking of new ideas, known as ‘Initiation apathy’, which relates to problems in thinking or cognition in some people living with MND.

The project

The aim of this collaborative, multi-centre project is to investigate the real-life impact of specific types of apathy on people living with MND, and their families, through the course of their illness. In particular, how apathy impacts on quality of life and caregiver burden, through repeated interviews over the course of a year.

Also, the secondary aim is to establish the use of a brief DAS (b-DAS) through collaboration with an ALS specialist clinic in Pennsylvania, USA and the University of East Anglia, to allow quick assessment and increase awareness of this complex behaviour.

Why is this important?

This is important as the impact of different types of apathy on a person’s everyday living, quality of life and interaction with their carers/families has not been explored, and such demotivational problems are rarely assessed in clinical practice. Determining how motivation changes over time, in combination with establishing how it relates to quality of life and burden will help guide intervention and symptom management techniques to improve the care and the lives of people living with MND and their families.

You can contact Ratko Radakovic at r.radakovic@uea.ac.uk

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“The need for further research in the field of MND is only growing. Thanks to the generosity of MND Scotland’s supporters we are able to continue innovative research that can be positively and practically applied in the clinic, care environments and the everyday lives of people living with MND. In particular, I truly want to increase awareness of the motivational challenges that arise in MND. This will make a difference and help people better cope by improving the quality of their lives and their families’ lives.”

Dr Radakovic | University of Edinburgh

Dr Radakovic | University of Edinburgh

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