the NeuRA blog

Motor neurone disease (MND), as discussed in previous posts, is not a disease of pure motor symptoms. MND can also affect one’s ability to perform complex judgments (e.g. financial decision-making) and leads to changes in behaviour (e.g. a person once very active and driven can become apathetic). These non-motor symptoms and behavioural changes often go unrecognised and underdiagnosed. In a recent study we investigated how these symptoms affect carers when compared to the more well-known motor symptoms of MND.

Not surprisingly, 48% of carers involved in our study reported high levels of carer burden. This is understandable because MND is a devastating disease with a very short prognosis. However, and more importantly perhaps, we found that non-motor symptoms were the major causes of carer burden, with the best predictor being abnormal behaviour, followed by the carer’s own stress. Our investigation also included classic MND motor symptoms, but these were not found to be the main reasons behind carer burden.

Importantly, our study demonstrated that carer burden is complex and multidimensional in MND. This is in line with a previous study by our group, which identified that carer burden in frontotemporal dementia, a disease related to MND, is also partly explained by carers’ own characteristics, and not only the symptoms exhibited by the patient.

Understanding the burden on carers is important, especially for a disease as debilitating as MND.

Studies like this demonstrate to health professionals the impact of these non-motor symptoms on carer burden in MND. Crucially though, our study highlights a major gap in what happens to the families of people with MND. Non-motor symptoms such as cognitive deficits and behavioural changes are not accounted for in the current diagnostic criteria for MND, yet these symptoms aggravate carer burden substantially.

There is important evidence that MND services based on multidisciplinary approaches prolong a patient’s life. However, these services are based on the current description of the disease and do not cater for non-motor symptoms. Until we include these symptoms in diagnostic criteria, many professionals are likely to under-recognise them, and will therefore not be able to advise carers accordingly. This means that carers will not know these behavioural changes are common symptoms, rather than actions personally directed towards them by the person with MND.

In our opinion, the burden and difficulties experienced by people caring for loved ones with MND would surely be improved if they at least had warning of these non-motor symptoms from the time of diagnosis. In short, it’s time the clinical diagnostic and clinical guidelines for MND were reviewed and updated.

Eneida Mioshi is a NHMRC Postdoctoral Research Fellow with the Kiernan Group. She is interested in how the behavioural and cognitive changes caused by disease, affect disease progression, prognosis and care.

Patricia Lillo, is currently an assistant professor of neurology at the University of Chile. She completed her PhD with the Hodges Group at NeuRA in 2012.