This is blog number 8 in our ‘Symposium Blogathon’ – counting down to the 32nd International Symposium on ALS/MND. Numbers in bold green type correspond to the code in the abstract book. Click on the number to be redirected to the full abstract (the page might take a minute to load).
Up to half of people with MND experience changes to how they think and behave, and these affect people in different ways. For some they will have little effect on daily life, while others will need significant day-to-day support. In a small number of cases, people with MND develop frontotemporal dementia (FTD).
People with MND may experience changes to their thinking and learning, language and communication and behaviour and emotions. It may become more difficult to make and carry out plans, process information and solve problems. They may find it harder to recognise words when reading or writing, have difficulty spelling or find it hard to follow conversations. They might also begin to lack enthusiasm, find it difficult to manage emotions and behave inappropriately in social situations.
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Guide
Changes to thinking and behaviour with MND
If a person is affected by FTD they will experience symptoms similar to those already described but with greater severity. With FTD, memory is not usually affected although it may appear that it is due to difficulties with concentration and taking in new information.
Accessing the right support, at the right time, is crucial to helping people living with MND, and their carers, manage changes in behaviour and cognition.
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Blog | 18 September 2018 | Martina Slapkova
MND and the mind – who is affected?
Plenary speaker Professor Sharon Abrahams from the University of Edinburgh is a founding member of the Euan MacDonald Centre for Motor Neurone Disease Research. Her research focuses on cognitive, behavioural, psychiatric and cerebral changes in MND and neurodegenerative disease.
Prof Abrahams was part of the team that developed the Edinburgh Cognitive and Behavioural ALS Screen (ECAS) which is now routinely used worldwide and is incorporated as an outcome measure in clinical trials. Her talk is about ‘Measuring cognitive change in ALS/MND’ (C21) and will look at the importance of measuring cognitive impairment based on the purpose of the assessment.
In her oral presentation, Dr Emma Devenney, from the University of Sydney, explores ‘Non-motor impairment across the ALS-FTD spectrum: Factors that influence disease severity and progression’ (C23). The idea of MND has changed dramatically over recent decades from one that was traditionally considered a pure motor disorder, to what is now deemed a multisystem neurodegenerative condition. The overlap across MND and FTD has been studied extensively but the extent of similarities (or differences) across this spectrum in terms of non-motor impairment remains less documented. Dr Devenney’s study aimed to identify the pattern of non-motor impairment (including neuropsychiatric symptoms, sleep and mood disorders) across people with MND with behavioural and cognitive changes compared to behavioural-variant FTD (bvFTD – not associated with MND) to determine the overlapping non-motor features across MND and FTD, and confirm the extent of the ALS-FTD spectrum. The findings support the current concept of the spectrum and further highlight the impact of non-motor symptoms in both the disease course and quality of life for people living with MND, and she will discuss these further in her talk.
In recent years, diabetes mellitus (DM), high cholesterol and being overweight have been studied to ascertain their disease-modifying affects in MND. It is now known, however, if these vascular risk factors increase the cognitive burden in people with MND. A team of researchers from China looked at the medical histories of 870 patients and found that vascular risk factors, particularly DM and high cholesterol, showed protective effects on cognitive decline in MND. Further research is needed to see if these observations might open new routes to potential MND therapeutics (COG-08).
Researchers in Italy have looked at the consequences of loneliness on mental and physical health. In people with MND these have been found to be related to poor psychological health. However, the effects of loneliness on behaviour and cognition in MND have not been fully investigated. Loneliness was measured using the UCLA Loneliness Scale in 206 people with MND, along with other cognitive and behavioural assessments. In this group, 126 patients reported no loneliness. Seventy were classified as low/moderately lonely and ten felt highly lonely. UCLA scores were significantly associated with depression, anxiety and quality of life but not with cognitive abilities, including social cognition. Motor functional status and disease duration were not related to loneliness.
These findings indicate that satisfaction with the social environment is associated with a sense of wellbeing that is not affected by functional status. Depression, anxiety, disinhibition, and apathy were higher in lonely people. Paying attention to social isolation in people with MND will help clinicians to intervene at an early stage (COG-23).
The issue of mental capacity is particularly relevant in people with MND given that up to 50% experience changes in cognition and/or behaviour. The life-limiting nature of MND means that important and difficult decisions are required to be made throughout the course of the disease. Healthcare professionals (HCPs) must therefore judge patient’s capacity to make specific decisions. It is not known, currently, how capacity assessments are used in the clinical care of people with MND in the UK.
Researchers from Edinburgh investigated HCPs current practices of using mental capacity assessments in clinics in the UK. Of those who were involved in capacity assessments of people with MND (49/86), about 90% had encountered people with MND who lacked capacity to make specific decisions, such as those relating to gastrostomy and non-invasive ventilation (NIV). Assessment methods varied from a general conversation with the person with MND and/or their caregiver to the use of a standardised assessment/tool. When asked if life-prolonging interventions would still be offered to those with cognitive impairment, around a third said yes, with the remaining HCPs stating it would depend on the nature and degree of cognitive impairment (COG-24).
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