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:
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 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.
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 firstname.lastname@example.org
Dr Radakovic | University of Edinburgh