Research assistant Faith Hodgins answers questions about Motor Neurone Disease (MND) and the Edinburgh Cognitive Behavioural ALS Screen (ECAS) in light of the launch of the ECAS website
Psychology Professor Sharon Abrahams and Dr Thomas Bak developed the Edinburgh Cognitive Behavioural ALS Screen (ECAS) with colleagues from the Euan MacDonald Centre. It was created to help healthcare professionals assess patients with Motor Neurone Disease (MND) for changes in cognition and behaviour. MND is also known as Amyotrophic Lateral Sclerosis (ALS).
This year, a new ECAS website for health professionals and researchers was launched.
The website includes information about the ECAS, links to download ECAS materials, information about how to access training, as well as all the latest ECAS news and publications. MSc Science Communication intern Alex Perry asks Research Assistant Faith Hodgins about MND and the potential impact of the ECAS.
What are the common symptoms of motor neuron disease (ALS/MND)?
Motor Neurone Disease is a progressive neurological disorder. In some people, early physical symptoms occur in the legs or arms- such as weakening, twitching or cramping of muscles. Others may notice increasingly slurred speech or difficulty swallowing. Cognitive and/or behavioural symptoms may be present even before the onset of physical symptoms.
What additional cognitive or behavioural problems could a patient with ALS/MND have?
Cognitive and/or behavioural changes occur in roughly 50% of people with MND. People who experience these changes may have difficulties with executive functions (e.g. decision making, planning, organising, weakened inhibition). They may also have issues with language functions (e.g. difficulty with comprehension, spelling and naming), and social interaction. The most common behavioural change is apathy which comes across as a lack of interest, motivation or concern.
Around 15% of people with MND also have frontotemporal dementia.
How may a patient benefit from participating in the ECAS?
The cognitive and behavioural changes associated with ALS/MND can have an impact on patient adherence to life-prolonging interventions, affect relationships and increase caregiver burden. These changes can be difficult for healthcare professionals to identify as they may be masked by the physical symptoms of the disease. The ECAS helps healthcare professionals assess cognition and behaviour. If changes are identified, then the patient and care team will be better informed when it comes to making decisions about their care. In addition, it may be possible to offer the patient psychological interventions that may improve their quality of life and that of their carer(s).
Is it possible that a patient with severe symptoms may have difficulties participating in the ECAS?
The ECAS is designed to accommodate physical symptoms such as speech or writing difficulties. Patients can choose whether to answer questions by speaking or writing. They could also use computer-assisted speech devices such as tablets, as long as the ‘predictive text’ function is switched off!
If the physician was unsure about the ECAS results, where would they go for a second opinion?
Healthcare professionals using the ECAS should have access to supervision from a clinical neuropsychologist or clinical psychologist. Clinical neuropsychologists and clinical psychologists have the expertise to interpret the ECAS results and may be able to offer advice, further neuropsychological assessment, and intervention.
Watch Faith talk about the project in the video below or visit the ECAS website.