How best to support the person living with MND and their family

MND Academy webinar

During this webinar you will gain an understanding of how a diagnosis of MND impacts the person and their family. You will hear about strategies that may aid discussion and be signposted to resources that will help.

• Rebecca will discuss the most appropriate psychological support needed by people with MND and their family
• Rebecca will highlight the latest research in psychological support in MND

Summary

In this webinar, Professor Rebecca Gould, shared her expertise on managing the key symptoms experienced by people living with Motor Neurone Disease (MND). Drawing on both the latest evidence-based guidelines and her clinical experience, Professor Gould provided practical advice and strategies aimed at improving quality of life for people with MND and their families.

Key points discussed:

Managing dysphagia (difficulty swallowing):
Dysphagia is one of the most challenging symptoms in MND, as it can lead to choking, aspiration, and malnutrition. Professor Gould noted, “One of the key strategies is to modify the texture and consistency of food and fluids to reduce the risk of choking.” She also emphasised the importance of alternative feeding methods like percutaneous endoscopic gastrostomy (PEG) tubes, stating, “For some, PEG tubes become a necessary option to maintain adequate nutrition when swallowing becomes too difficult.”

Respiratory impairment management:
Respiratory issues, such as breathlessness, fatigue, and sleep disturbances, are common in MND. Professor Gould explained that, “Non-invasive ventilation, such as BiPAP or CPAP, can be highly effective in managing these symptoms and even prolonging survival.” She stressed the importance of early discussions about ventilation options and regular monitoring of respiratory function, “It’s essential to start these conversations early, so patients and families can make informed decisions before the symptoms become severe.”

Muscle cramps, spasticity, and fasciculations:
Muscle-related symptoms such as cramps, spasticity, and fasciculations are frequently reported. “These can be managed through a combination of medication, physical therapy, and assistive devices,” said Professor Gould. She highlighted the importance of maintaining good posture and range of motion, “By focusing on posture and movement, we can help prevent contractures and further disability.”

Cognitive and behavioural changes:
“Up to 50% of people with MND experience some degree of cognitive impairment,” stated Professor Gould, with around 15% developing frontotemporal dementia. She stressed the importance of early identification of these changes, noting, “Cognitive and behavioural changes can affect decision-making, communication, and a person’s ability to manage their own care. Early recognition is key to providing appropriate support.”

Pain and fatigue management:
Pain and fatigue are common symptoms that can significantly affect quality of life. Professor Gould discussed the use of both pharmacological and non-pharmacological approaches, such as “heat or cold therapy, massage, and transcutaneous electrical nerve stimulation (TENS) for pain relief.” She also recommended strategies for managing fatigue, including “energy conservation techniques, pacing activities, and regular rest periods.”

The evidence base:

Professor Gould referenced the NICE guidelines on the assessment and management of MND, explaining that they provide “a comprehensive, evidence-based framework for symptom management.” These guidelines emphasise the role of the multidisciplinary team (MDT) in MND care, ensuring that all aspects of a patient’s needs are addressed. She also encouraged attendees to access resources from the MND Association, including factsheets and guides, adding, “The MND Association offers a wealth of practical advice for both patients and families, and I highly recommend exploring these resources.”

Conclusion:

In her closing remarks, Professor Gould underscored the importance of working closely with the multidisciplinary team to provide effective symptom management: “By utilising evidence-based strategies and collaborating with the MDT, we can help alleviate distressing symptoms and empower people to live as fully as possible, despite the challenges of MND.” The webinar provided valuable insights into the practical aspects of symptom management and emphasised the importance of a proactive, holistic approach.

Key takeaways:

• Dysphagia: Modify food textures and consider PEG tubes to ensure adequate nutrition.

• Respiratory issues: Early intervention with non-invasive ventilation can improve survival and comfort.

• Muscle symptoms: Medications, physical therapy, and posture management are key to reducing discomfort.

• Cognitive and behavioural changes: Early detection and ongoing management are critical for effective care.

• Pain and fatigue: Use a combination of pharmacological and non-pharmacological strategies to improve quality of life.

Action points:

• Utilise the NICE guidelines and MND Association resources for evidence-based symptom management.

• Regularly assess cognitive and behavioural changes in people with MND.

• Advocate for the inclusion of psychologists and other specialists as part of the multidisciplinary care team.