Until there's a cure ... there's care

A/Prof Gail Robinson, headshotBy Associate Professor Gail Robinson, PhD, Consultant Clinical Neuropsychologist, NHMRC Boosting Dementia Research Leadership Fellow, UQ Neuropsychology Research Clinic

Neuropsychology is focused on the cognitive (or thinking), behavioural and emotional changes that arise due to alterations in the brain or central nervous system. We now know that changes in cognition, behaviour and emotion can occur in as many as 50% of those diagnosed with MND. At the University of Queensland (UQ) the focus of our neuropsychology research is to understand more about specific changes in cognition, behaviour and mood, especially in relation to different types of MND, and the effect on family, friends and carers.

First, identifying the pattern of neuropsychological changes in MND, and differences between MND types, will refine what we understand about the range of cognitive and behavioural changes. In order to do this we invite everyone who receives a diagnosis of MND to have a detailed neuropsychological assessment that targets specific cognitive domains (e.g., language, memory, executive functions, emotional processing) and behaviours like disinhibition or apathy. As changes are frequently quite subtle, it is family or carers that often notice changes, rather than the individual with MND. Therefore, we also ask family and carers to fill in questionnaires about changes as well as individuals with MND. From the pattern of cognitive testing and the information from questionnaires, we compile a neuropsychological profile of strengths and weaknesses for every individual. This informs our research and is the basis for feedback to families, carers and the individual with MND. In addition, we recognise that MND affects not only the individual with MND but also their family, friends and carers. One component of our research is to detail the burden of care for those involved in order to determine what is needed to support those affected, including the main carer. This will inform the health system more broadly about MND-specific care needs.

Second, with the support of the MND Research Institute of Australia, we are currently developing an online version of a carer’s behaviour rating scale, the Online Carer’s Questionnaire (OCQ). The OCQ is designed to measure behavioural and cognitive changes that are observed by carers and it involves filling in a questionnaire via the internet at home (rather than coming to a hospital clinic). The OCQ is based on a widely-used screening tool in MND, the Edinburgh Cognitive and Behavioural Screen, which was developed by Prof Sharon Abrahams and colleagues in Edinburgh (UK). We will first validate the OCQ with the help of individuals attending the Brisbane MND clinic, which is led by neurologists Dr McCombe and Dr Henderson.

Once we are confident the OCQ is useful in assessing changes in behaviour and cognition, we will make it available to use by anyone with MND across Australia (i.e., in rural, regional and city settings) and then by the international ALS research community. Our research is a collaboration between the Brisbane MND Clinic and MND researchers at UQ, including genomic expert Prof Naomi Wray who leads the sporadic ALS Australia Systems Genomics Consortium (sALSA-SGC). Our research team includes international ALS experts Prof Abrahams (Edinburgh) and Prof Al-Chalabi (King’s College London), which will enable us to validate the OCQ in the UK and then make it available to the international ALS community. As MND is a complex and heterogeneous disease, we are aware that a good standardised and validated online measure of behaviour and cognition like the OCQ is urgently needed to contribute to defining the biological basis of MND, along with genetic data that is now being collected world-wide via biological samples (e.g., saliva and blood).

MND research at UQ in Brisbane is highly collaborative and focused on detailed research studies of clinical neurological features, genetic characteristics, neuropsychological features, brain MRI neuroimaging studies, and metabolic studies, among others. In the last 5-10 years, there has been exponential growth in the Brisbane MND research community, with increased collaboration and organisation starting to see MND research flourish. We are committed to understanding the complexity and nuances of this disease in order to continue the search for the so far elusive cure. At the same time, quality of life and support for both the individual with MND and family, friends and carers are high priorities. We are motivated and spurred on by the courage and determination of the many individuals we meet - we have been inspired and will do our best in this endeavour.

UQ MND Clinical Neuropsychology Team: Gail Robinson – Head; Amelia Ceslis – current Registrar; Rosemary Argall – past Registrar; Amelia Hobson – Doctor of Psychology student.

Neuropsychology clinic, outside of building Neuropsychology department sign

A/Prof Gail Robinson's research is funded by MND Victoria through the Mavis Gallienne and Graham Lang Research Grant - your fundraising and donations to MND Victoria have made this research possible!


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