introduction introduction

Apathy is a lack of motivation towards goal directed behaviours and has been reported as occurring in up to 50 per cent of people living with motor neurone disease (MND). Apathy is a complex syndrome that is composed of different subtypes of demotivation. Our previous research showed Initiation apathy (a lack of motivation for generation of thoughts) is characteristic in MND and associates with performance on certain neuropsychological tasks. However, the effect of apathy subtypes and how they translate into functioning in everyday life and wellbeing in MND, for both the patients and their families, are seldom explored. Therefore, this multicenter, multidisciplinary study primarily aims to explore apathy subtype trajectories throughout the progression of the disease and its associations with quality of life, well-being and caregiver burden in MND. Furthermore, determining to what extent apathy subtypes are associated with quality of life will help inform the design of behavioural interventions using domains where patients do not have motivational difficulties, linking to the MND research program and the development of the MiND Toolkit project at the University of East Anglia and the Clinical Audit Research Evaluation-MND (CARE-MND) platform at the University of Edinburgh.

key research questions key research questions

  • How do the levels of different types of apathy change over time in people living with   MND?
  • What impact do apathy subtypes have on wellbeing, quality of life and caregiver burden in people with MND and their families?

research design and outputs research design and outputs

This research is of a cross-sectional design looking at associates of apathy subtypes in people living with MND and a further longitudinal design, with people with MND and their families being asked to take part in four repeat interviews every three months for a year exploring any changes in motivation, behaviour, cognition, quality of life and well-being.

the research team and funding the research team and funding

Dr Ratko Radakovic (PI at the University of East Anglia)

Prof Sharon Abrahams (PI at the University of Edinburgh)

Dr Zachary Simmons (Collaborator at Pennsylvania State University)

Prof Eneida Mioshi (Collaborator at the University of East Anglia)

Kaitlin Dudley (Research Associate at the University of East Anglia)

Funding: MND Scotland

Visit Apathy in MND for further details.