A University of Sheffield study, supported by people who took part through our Remote Research Platform, suggests apathy in motor neuron disease isn’t caused by a loss of motivation but forms from everyday tasks becoming too difficult to attempt.
Apathy affects an estimated 30% to 70% of people living with MND but is poorly understood and often mistaken for low mood or a lack of willingness. New research shows that for many people, it’s neither, but a response to activities that now take far more effort than they used to.
What the study found
The study, published in the Journal of Health Psychology, was carried out by researchers at the University of Sheffield and Sheffield Teaching Hospitals. The team surveyed 69 people living with MND and 54 of their family members or carers, including in-depth interviews with eight people living with the condition.
People took part either through the Sheffield MND Care and Research Centre or through our Remote Research Platform, the UK MND Research Institute’s platform connecting people living with MND to research opportunities.
The researchers found that a frustrated sense of competence, feeling unable to do things despite wanting to, was one of the strongest factors linked to apathy overall, and a significant factor in its emotional and initiation forms.
What people said and what this means
In interviews, people living with MND often described their own experiences using words like ‘laziness’ even while describing feelings that closely matched clinical descriptions of apathy. Many hadn’t discussed these feelings outside their own household; if at all, some hadn’t spoken about it with anyone.
What came through instead were accounts of ordinary tasks becoming disproportionately effortful. One person described a short trip to a coffee shop requiring the best part of half an hour of preparation. The researchers read this as a rational response to a much higher cost of doing things, not a lack of willingness. Routine and forward planning helped some people manage it.
This research helps us understand apathy in MND as a consequence of the everyday cost of getting things done, not a lack of willingness. That distinction matters; it means clinicians and families can look for practical ways to make daily tasks more manageable, rather than assuming someone has lost interest.
— Professor Chris McDermott, Co-Director, UK MND Research Institute
Why this matters
Apathy in MND is linked to lower quality of life and more strain on carers. Because there’s little shared language for describing it, it often goes unrecognised by the person experiencing it, by families, and in clinical care.
By understanding these themes, we may be able to develop ways to better assist people with MND and the people who care for them. Rather than treating apathy as a lack of willpower, future support could focus on rebuilding a person’s sense of confidence in themselves or reducing the everyday obstacles that make activities feel too costly to attempt.
Get involved
This study was made possible in part by people living with MND who took part through our Remote Research Platform, which connects people living with MND to studies like this one
About the UK MND Research Institute
The UK MND Research Institute is the national coordination infrastructure for MND research in the UK, bringing together researchers, clinicians, patients, and industry partners across the UK’s leading institutions.
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In more depth
Bailey F, Eun MW, Hobson E, McDermott C, Knox L. ‘Understanding apathy in people with amyotrophic lateral sclerosis using motivational theories.’ Journal of Health Psychology, published online 19 June 2026 (https://doi.org/10.1177/13591053261454342)
The study used a cross-sectional design, combining validated questionnaires, including the Dimensional Apathy Scale, General Self-Efficacy Scale, and Basic Psychological Need Satisfaction and Frustration Scale, with semi-structured interviews. It drew on two motivational frameworks: social cognitive theory and self-determination theory.
Constructs from both theories significantly predicted apathy and its three sub-domains, explaining between 32% and 64% of variance depending on the sub-domain. Frustration of the psychological need for competence was highlighted by the authors as a consistent and prominent predictor of apathy, alongside self-efficacy, though its role varied by sub-type: it did not significantly predict executive apathy or the caregiver-rated (proxy) measure.
The study builds on earlier related work involving members of the same research group, including the 2024 COMMEND trial and the MiND Toolkit for carers. The authors suggest ACT may work in part by addressing the same psychological mechanisms identified here.
Limitations: the cross-sectional design means the study captures a single point in time rather than change over years, so it can’t establish cause and effect. The qualitative interview sample (n=8) was small. The authors call for longitudinal research, and for future work to include the perspectives of carers and healthcare professionals directly.
