Cognitive impairment, decision making and mental capacity in Motor Neurone Disease

Cognitive and behavioural impairments are common in motor neurone disease (MND) affecting up to 50% of patients, of which 15% suffer from a behavioural variant frontotemporal dementia (Goldstein and Abrahams, 2013). Furthermore it has recently been established that these changes increase in the later stages of the disease (Crockford et al. 2018). Patients typically suffer from executive dysfunction, which can have an impact on the ability to plan, organise and make decisions. Other impairments include language dysfunction and social cognition deficit. However it is unclear whether these impairments in MND can affect a person’ mental capacity to make specific decisions such as those related to consent for treatment.

Assessment of mental capacity typically involves determining whether a person can understand, retain, weigh up and communicate the information relevant to the specific decision. A core component of a mental capacity assessment is the demonstration of cognitive
impairment. Here at the University of Edinburgh we have developed a quick and efficient way of assessing these changes in MND. The Edinburgh Cognitive and Behavioural ALS screen (ECAS; Abrahams et al. 2013; https://ecas.psy.ed.ac.uk/) is a multi-domain screen developed
for people with physical disability.

In this project we will look at the interaction between the profile of cognitive and behaviour
change in MND, executive dysfunction, decision making in everyday life and mental capacity
to make decisions particularly in regard to medical intervention. This work will be in accord with
the with the new National Institute for Health and Care Excellence (NICE) guidelines on
decision making and mental capacity and on MND.