Investigating how possible cognitive and behavioural changes in MND may impact a person's ability to make a decision about assisted dying.
Principal investigator: Prof Sharon Abrahams
Lead Institution: University of Edinburgh
MND Association Funding: £236,035
Funding dates: October 2025 - September 2028
About the project
Legislation over assisted dying is currently being debated in the UK and USA, and all bills have included a statement on the person needing to have the capacity to make an informed decision. Previous research has shown that up to 50% of people with MND experience cognitive and/or behaviour changes and in some people these changes are severe enough to be diagnosed as a frontotemporal dementia (FTD). This project will investigate how these cognitive and behavioural changes may impact a person's ability to make a decision over assisted dying. It will also explore the views of people with MND and healthcare professionals on assisted dying legislation and consider ethical issues surrounding assisted dying which may be specific to this disease.
We remain neutral about any change in the law around assisted dying.
What could this mean for MND research?
The project could help to guide and support people with MND, their families and caregivers, policy makers and clinical professionals through the decision process for assisted dying. It could also highlight some of the ethical considerations to address for assisted dying in MND.
Our policy on assisted dying
The Motor Neurone Disease Association supports all people with MND, their families and carers. We are a membership organisation, and our members hold a wide range of views on assisted dying. We take a position of neutrality towards any change in the law on assisted dying.
We always work within the law and do not provide encouragement or assistance to people wishing to pursue assisted dying.
Surveys of people living with MND show that the end of a person’s life is something that they often want to discuss with both their family and healthcare professionals. We provide information and support to help people have these difficult conversations. We also campaign for access to appropriate, high quality, end of life care for everyone with MND.
People with MND, their families and friends can contact the MND Association’s helpline MND Connect by calling 0808 802 6262 or emailing mndconnect@mndassociation.org
August 2025
Project code: 965-794