Improving care for the hidden symptoms of motor neuron disease
Aiming to assist with an often-overlooked side of motor neuron disease (MND), a new Flinders University project is working with people living with MND, and their families, to understand and manage cognitive and behavioral 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 50% of those diagnosed may experience changes to their thinking and behavior 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 behavioral 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 health care 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 optimized 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 health care professionals," says Dr. Francis, from the College of Nursing and Health Sciences.
Health care professionals are also being recruited to the project, to further inform the development of clinical resources.
"These resources will support families to work together with their health care team to navigate cognitive and behavioral changes, in ways that best suit their individual needs and preferences," says Dr. Francis.
Board Chair of MND Australia and MND South Australia Andrew Danson says "Investing in research focused on the care of individuals with motor neuron disease is paramount to advancing the quality of support available to those affected by this condition.
"At MND Australia, we are dedicated to funding groundbreaking research that seeks to enhance the standard of care as well as the very important scientific research. High-quality care not only improves the quality of life for individuals living with MND but also has the potential to prolong life, granting individuals invaluable additional time with their loved ones."
Provided by Flinders University