Aiming to assist with an often-overlooked side of motor neurone disease (MND), a new Flinders University project is working with people living with MND, and their families, to understand and manage cognitive and behavioural changes associated with the disease.
With two people diagnosed with MND in Australia every day, symptoms typically include muscle weakness and speech and swallowing issues but up to half of those diagnosed may experience changes to their thinking and behaviour as well.
This can include a lack of motivation, trouble concentrating, increased difficulties solving problems and finding the right words for conversations, as well as difficulty expressing emotions.
Recently awarded the MNDSA MND Research Grant from MND Australia, Dr Rebecca Francis and her team will now work to understand how best to support people experiencing this aspect of MND.
"At the moment, most health systems don't have a consistent approach to assessing and managing behavioural changes for people living with MND, which means they're often not openly discussed with families and in some cases, they're not detected at all," says Dr Francis, a speech pathologist and researcher in Flinders' Caring Futures Institute.
"Overlooking these changes can affect a person's ability to make decisions about their care and treatment, as well as impact on family relationships. We want to understand how families who are experiencing MND would prefer to learn about and manage these changes and create a way for their healthcare team to help them through the process."
Now recruiting participants from across Australia and globally, the team - who all currently work in the MND space - are aiming to work directly with those living with MND, and their families, to understand how care can be optimised to meet their needs.
The project will consist of interviews and workshops, where the input of families directly impacted by MND will be crucial to inform the development of new tools.
"Working directly with those with lived experience, we want to develop clinical frameworks and education resources for people with MND, their families and healthcare professionals," says Dr Francis, from the College of Nursing and Health Sciences.
