How common is depression in motor neurone disease?

A lay summary by Harry McDonough, reviewed by Ian Coldicot and by an MND lay panel.


Motor neurone disease (MND) is a progressive and disabling condition of the nervous system with no current cure. Faced with this diagnosis and outlook, it might be expected that the mood and emotional wellbeing of people living with MND could be affected.

Whilst each individual will process and respond to their MND diagnosis in their own way, some may have more persistent psychological difficulty. Depression is a condition in which there is a persistent change in mood, where individuals may feel sad, anxious, worthless, or lose interest in things previously enjoyed.

Why is the study important?

It is currently uncertain how common depression is in MND. This would be useful and important information for:

  • MND sufferers and their loved ones – to be aware of the signs of depression and discuss with healthcare professionals as needed
  • Healthcare professionals – to know whether to routinely assess for depression and, if required, offer treatment
  • Planning clinical services – to ensure psychological services are available and accessible for people with MND

What did the authors do and how did they do it?

This study aimed to determine how common depression is in MND. The study was part of a wider national study called TONiC (Trajectories of Outcome in Neurological Conditions). TONiC looks at the factors that influence quality of life for people with neurological conditions, including MND.

People living with MND were recruited to the TONiC study. To best determine how common depression was in the group studied, the authors identified cases of depression in multiple ways:

  • Modified-Hospital Anxiety Depression scale (M-HADS-D): a questionnaire commonly used to assess individuals for depression
  • Medications taken by people with MND: was the individual already prescribed an antidepressant medication?
  • Questionnaire of past medical history: this asked individuals if they had already been diagnosed with depression in the past

The researchers also looked at how depression symptoms changed over a period of 2.5 years in the group recruited to the study. To do this, they used computer modelling techniques to identify groups of individuals that followed similar trajectories of depressive symptoms over time.

What are the results?

Depression was found in 23% of the 1120 people living with MND recruited into the study. On average, those with depression were more likely to be younger and have more advanced MND than those without depression. Females were more likely to have depression than males and those with depression reported a worse level of quality of life in comparison to those without depression. The presence of depression did not, however, seem related to how long an individual had had MND.

Depression was more common in people with MND if they

  • Were young
  • Were female
  • Had more advanced MND

The authors looked at when people were diagnosed with depression in relation to their MND diagnosis. They found 23% were diagnosed with depression at the time of or following their MND diagnosis. 5% reported their depression began more than 3 years prior to their MND diagnosis, with the remaining 72% being affected in the 3 years leading up to their MND diagnosis.

The authors studied whether those identified as having depression were on antidepressant medication. They found that 82% of people with MND with depression were on antidepressant medication. Those not on medication were much more likely to be male and at an advanced stage of MND.

The study aimed to categorise people with MND into groups based on their trajectories of depressive symptoms over time. Doing this, the authors found that people fell into 3 different groups. As they studied the groups over time throughout the study, they saw that the level of depressive symptoms stayed stable in each group. The table above describes that depression was more common in people with MND if they were female, young, or had advanced MND.

What do the findings mean going forward for people with the disease?

The study estimates that 23% of people living with MND have depression. Given how common depression would appear to be, the authors suggest MND clinics should routinely and proactively assess people for depression, exploring treatment options, including ready access to psychology services.

Nearly three-quarters of depression cases in people with MND start less than 3 years before MND diagnosis. With this in mind, the authors suggest that depression may be an early feature of MND before the more widely recognised symptoms start. Indeed, depression has been recognised as an early symptom in other neurological conditions, such as multiple sclerosis. It is, however, worth remembering that more than 75% of people with MND in this study did not have depression. Therefore, if depression is an early symptom of MND, it does not appear to be the case for everyone.

Looking to areas for future research, the authors suggest it is important to consider undertaking a trial of treatments of depression symptoms in MND. This study shows that depression is common in people with MND, affects quality of life, yet the effects of treatments for depression in MND are not yet known.

This study can be found at:
Paper title
Prevalence of depression in amyotrophic lateral sclerosis / motor neuron disease: multi-attribute ascertainment and trajectories over 30 months
Author list
C. A. Young, J. Ealing, C. J. McDermott, T. L. Williams, A. Al-Chalabi, T. Majeed, K. Talbot, T. Harrower, C. Faull, A. Malaspina, J. Annadale, R. J. Mills, A. Tennant & On Behalf Of The Tonic Study Group
Publication details including date of publication
Journal: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Year: 2023