Improving wellbeing and quality of life

Summary

Aside from finding out the causes of the disease and ways to treat it, it is vital that people who are living with MND receive top-quality care. Current research is looking into ways of how to improve their wellbeing, along with managing disease symptoms. These include physiological changes, such as problems with breathing, weakening of postural muscles, cramps or joint stiffness. Psychological changes may also affect the person’s mood and cognitive or behavioural abilities.

The majority of the research focusing on improving quality of life in MND collects data directly from people living with the disease, their carers and family, using established measures and tests. Sometimes, it is difficult for people with MND to precisely communicate what they are thinking and feeling, due to deteriorating speech. To try overcome this, researchers are investigating new ways to communicate effectively with people who are unable to speak and, in the more severe cases, who are completely locked in their body. They also want to make it easier for both patients and clinicians to track progression of the disease by a remote ‘telehealth’ system, removing the need to visit clinics for assessments.

Physiological symptomsPsychological symptomsCommunication and technology

Respiratory changes are one of the symptoms that lead to a severe disability due to weakening of the breathing muscles; the diaphragm (a large muscle beneath lungs), and intercostals (muscles between ribs). As these are not able to work properly, lung capacity decreases over time. Research in this area is now focusing on predicting survival based on the progression of respiratory scores over time. Previously, there was some focus on improving functionality of the diaphragm itself, but these trials were largely unsuccessful.

MND research is also looking into the treatment of cramps and overall muscle weakness and stiffness. Aside from medication used to relieve the symptoms, physiotherapists might also recommend exercises to prevent early joint stiffening and muscle tightening. Some researchers look at the different exercises people with MND can do and how these might be beneficial.

The neck muscles of some people with MND are too weak to hold their head up straight and so physical support is needed. Collars are currently a part of standard care to overcome this issue, and researchers are looking into ways of how to make these more comfortable and personalised.

The following presentations will discuss respiratory changes and disease management at the Symposium. Find their abstracts using the codes below in Abstracts online:

  • C40: Comparison between slow and forced vital capacities on survival prediction in ALS
  • C44: A US randomized trial of DPS in ALS: The outcome differs from two European trials
  • C74: Trial of resistance and endurance exercise in ALS
  • C75: The 100 collars project: A multi-centre evaluation of the HeadUp cervical orthosis
  • C76: Treatment for cramps in ALS/MND: An updated Cochrane review

More abstracts relating to physiological changes can be found in sessions 6B and 8B.

Up to 50% of people with MND experience some changes to the way they think (cognition) and behave, ranging from very mild to more severe. For many people the changes are subtle and have little or no effect on daily life. For some people, they are more apparent, and intensive support may be needed to manage daily routines. In a small number of cases, people with MND develop frontotemporal dementia (FTD) which can have a major impact on daily life and requires a much higher level of support.

Cognitive and behavioural changes can be assessed by the standardised Edinburgh Cognitive and Behaviour ALS Screen (ECAS) test. This helps clinicians and healthcare professionals to identify patients with cognitive and behavioural symptoms and may help track changes as the disease progresses. There is research looking at the differences in psychological symptoms between people with MND-FTD and people with FTD only. Another area of research investigates language, which has been observed to be significantly affected in people living with MND.

Aside from behavioural and cognitive changes, people with MND were also observed to have significant changes in mood and emotion processing. This can include apathy and emotional liability (inappropriate responses, such as uncontrollable laughing or crying). Researchers are looking into better identifying mood changes in people with MND to design targeted treatments where possible.

The following presentations will discuss psychological changes at the Symposium. Find their abstracts using the codes below in Abstracts online:

  • C97: Cognition in ALS-FTD and incidence of language changes
  • C99: Behavioural changes in FTD and ALS-FTD
  • C101: Development of brief apathy scale

More abstracts relating to psychological changes can be found in session 10B.

People living with MND are best placed to explain how they feel and listening to them is crucial to understand what they would find helpful. Technology is now a big part of this field of research, mainly focusing on frequent tracking of health status of the patient, which can be logged in by the person living with MND at home and fed back to their physician. This reduces the need to travel to the physician’s office and may also reduce costs to the healthcare system. Another way of introducing technology into communication with people with MND is the use of brain-computer interface (BCI). The aim of BCI is to help paralysed patients to move their limbs by only thinking about the movement. While still in development, researchers are on track of bringing this idea to life.

The following presentations will discuss communication and technology at the Symposium. Find their abstracts using the codes below in Abstracts online:

  • C8: Health status perspective in ALS
  • C9: Investigating quality of life of people with locked-in syndrome
  • C16: Will telehealth revolutionise clinical care for ALS patients?
  • C17: BrainGate: towards restoring communication and mobility

More abstracts relating to communication and technology can be found in sessions 2B and 3B.