Decision making and mental capacity in MND

People with motor neuron disease (pMND) have to make important decisions throughout their illness, including whether to engage in clinical trials and specific medical treatments, which may prolong survival. Cognitive and behaviour changes are found in up to 50% of pMND. This includes executive and language dysfunction, social cognition difficulties and apathy. Mental capacity involves the ability to understand, retain and appreciate, weigh up and communicate a specific decision. Judging whether some has mental capacity has legal implications and may affect care and financial decision and is important for the person and their family members.

This research aims to investigate the impact of changes in cognition and behaviour on their mental capacity to make decisions about clinical trial participation and medical treatments by answering: Is mental capacity to make specific decisions affected in pMND? Is there a relationship between different cognitive/behavioural impairments and difficulties with particular steps of the capacity assessment? Are there types of support, which can ameliorate difficulties and help individuals maintain capacity to make treatment decisions?