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Explainer: Sleep and MND

Getting enough sleep can help us feel rested in mind and body, and generally feel better as we get through each day1.

But what happens to sleep for people living with motor neurone disease (MND)? Can the symptoms of MND be better managed to help with sleep?
 
Research finds that getting enough sleep can be very important for people living with MND. Sleep helps to provide relief and improve quality of life with MND2.
 
MND may make sleep difficult, however. For many people with MND, as the disease and consequent muscle weakness progresses, they experience problems that disrupt their sleep3, 6. Waking up frequently or having trouble getting to sleep then creates other sorts of strains and pressures, adding to the burden of the disease4.
 
Problems with sleep from MND affects carers and loved ones, too. Studies show that sleep plays a major role in the wellbeing and support needs of family, loved ones and others caring for someone living with MND5.
 
With the New Year well and truly underway, in our first blog for 2021 we looked at the evidence of what might help with sleep for people affected by MND. We provide some ideas and strategies for, hopefully, getting more rest and relief.
 

How MND affects sleep

Every person living with MND experiences the disease differently, and there are many ways that its various symptoms can affect the quality of sleep. What prevents, or helps, sleep for one person living with MND may not be the same for others.

Despite the individual nature of MND, scientists and clinicians have conducted research suggesting that that there are two major groups of symptoms from the disease that can disturb sleep:

  • the physical degeneration of motor neurones and the associated weakness in muscles; and,
  • the impact on mental health that may occur as a result of living with MND2.

Muscle weakness

Muscles weakness throughout the body generally gets worse as the disease progresses. Muscle weakness usually makes breathing difficult and causes a range of other problems, all of which can affect sleep, including muscle fasciculations (more commonly known as muscle twitches), cramps, pain and immobility2, 3

Muscle twitches are involuntary and occur when tiny muscle fibres shrink and relax. Muscle cramps, like twitches, are also involuntary, but are different in that they are painful spasms of a muscle. For many people living with MND, cramps are more likely to affect lower limb muscles and get worse during the night4.

In addition to twitches and cramps, movement during sleep may become increasingly difficult2. For example, changing position in bed could require more help from carers. In some cases, restlessness in the legs is a problem with MND3.

With the difficulty in moving muscles and cramps during sleep, some people with MND may experience pain in various parts of the body. If pain disrupts sleep, the lack of sleep may in turn worsen pain2.

Sleep-related breathing problems with MND occur mainly due to the weakening of the respiratory muscles. As a result of nerve degeneration and weakness in the diaphragm and intercostal muscles, breathing may become shallower during sleep and carbon dioxide (CO2) can build up in the body2. The increase of CO2 causes frequent wakening and disturbed sleep.

Sleep apnoea, which is the temporary stopping of breathing while asleep, may be a problem for some people with MND as well6. Many people with MND have assistance for breathing overnight (e.g. non-invasive ventilation through a mask) to help them sleep well (see What can help). 

Mental health

The psychological symptoms associated with MND are another major area of MND symptoms that can disrupt sleep2, 7. Fear about the future, persistent feelings of sadness and worry, recurrent grief and similar stresses can all make the body agitated. When the body is agitated, it remains aroused and alert, and has difficulty relaxing.

Both the physical and psychological symptoms of MND that disrupt sleep tend to do this by affecting the amount and quality of sleep, or what is also known as sleep disruption2. Sleep disruption with MND generally refers to instances where there is:

  • concern about how well or how much sleep a person is getting
  • difficulty falling or staying asleep
  • waking up early and not being able to get back to sleep.

The sleep disruptions can lead to sleepiness during the day, increased fatigue and a reduced quality of life2. Headaches may also occur but are generally a more serious sign of CO2 build up in the body and should be checked as soon as possible by a health professional.

As a result of the problems associated with sleep disruptions, people living with MND experience a greater burden from the disease. The burden reinforces the need for people living with MND to work closely with a clinical team about ways of best managing their sleep (see What can help).

Carer experiences of sleep and MND

Carers, loved ones and others who support and help people living with MND have reported difficulties from sleep disruption associated with MND, for the people they provide care to, and for themselves2, 5. These difficulties can make it harder for carers to manage their own health and well-being.  

Care is critical to people living with MND. Most people will be receiving support from their health care team to manage their symptoms and disability and aged care services to support them with personal care. However, it is family carer, family and friends who will be supporting people living with MND on a day to day basis and overnight from diagnosis through to end of life5

Providing care means also helping to manage sleep disturbances. People living with MND may need their carer to assist them with the use of medications, movement in bed, and the fitting of masks and other equipment used to help with breathing. The increased fatigue from lack of sleep may also mean that the person requires more support from their carer during the day. Some carers might find they need to provide help throughout the night, making it hard for them to get the sleep they need as well. 

Carers tend to experience increasing levels of strain and distress as MND progresses5. People living with MND increasingly lose the ability to move, breathe and easily communicate, and often rapidly. The burden on carers providing support as MND progress may be significant, affecting their emotional and physical health. Anxiety, grief and depression can lead to insomnia and other sleep disturbances for carers, in addition to the physical fatigue and exhaustion they may feel.

What can help?

Sleep disturbances with MND are common, and as with all symptom management, research suggests it is important for people living with MND to have regular assessments. Optimal symptom management and a palliative coordinated multidisciplinary team approach to care are crucial in managing the physical and psychological impacts of MND associated with sleep disturbances2.

For people living with MND, it is important to speak with their neurologist, palliative care physician, physiotherapist, occupational therapist and other members of their health care team about what may help manage their sleep6. It can help to talk about:

  • having regular respiratory assessments
  • use of non-invasive ventilation (a type of assisted ventilation, where a machine boosts air flow in and out the lungs, normally through a mask held on by straps around the head)
  • use of aids and equipment to support their comfort and movement in bed 
  • saliva management (e.g. preventing drooling or the mouth becoming dry during sleep)
  • medications (e.g. opioids for managing pain and benzodiazepines for reducing anxiety)
  • meditation and relaxation techniques 
  • managing fatigue (e.g. getting plenty of rest following physical activity and in the later stages of MND, including things like washing, dressing or using a hoist, and using aids and equipment).

Carers also have valuable options for support. Evidence suggests8, 9 that it can help carers to:

  • find ways of talking openly with the person they are caring for about their feelings, needs and how to work best as a team
  • check in with a GP or other health professional about what may help when providing care and planning ahead
  • try and keep doing recreational and social activities and spending time with friends and other loved ones
  • attend support groups and information sessions, including those to help with understanding grief
  • access support and information online, including Carers Australia, CarerHelp, CareSearch and CarerGateway.

More research will also help. Scientists have recommended that we look to future studies for a better understanding of sleep and MND, and to shed light on the ways MND affects motor control and the respiratory system, and the way they disrupt sleep2.

More information

Breathing and MND: medications and non-invasive ventilation

Planning ahead

Aspects of Care for the Primary Healthcare Team

This article was reviewed by the following expert: Professor David Berlowitz, Chair of Physiotherapy, University of Melbourne and Austin Health, Victoria.

References

1. Kyle, S. D., Espie, C. A. and Morgan, K. 2010. “‘...Not just a minor thing, it is something major, which stops you from functioning daily’: quality of life and daytime functioning in insomnia.” Behav. Sleep. Med. 8 (3): 123–140. doi: 10.1080/15402002.2010.487450.
2. Boentert, M. 2020. “Sleep and Sleep Disruption in Amyotrophic Lateral Sclerosis.” Curr Neurol Neurosci Rep 20 (7): 25–25. doi: 10.1007/s11910-020-01047-1.
3. Congiu, P. et al. 2019. “Sleep cardiac dysautonomia and EEG oscillations in amyotrophic lateral sclerosis.” Sleep 42 (11) Oct. doi: 10.1093/sleep/zsz164.
4. D’Cruz, R. F., Murphy, P. B. and Kaltsakas, G. 2018. “Sleep disordered breathing in motor neurone disease.” J. Thorac. Dis. 10 (Suppl 1, Jan): S86–S93. doi: 10.21037/jtd.2017.12.19.
5. Aoun, S. M., Bentley, B., Funk, L., Toye, C., Grande, G. and Stajduhar, K. J. 2013. “A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions.” Palliat. Med. 27 (5): 437–446. doi: 10.1177/0269216312455729.
6. MND Australia, 2017. “Aspects of care for the primary health care team,” MND Australia, Canberra, 2017. Accessed: Feb. 25, 2021. [Online]. Available: https://www.mndaust.asn.au/Documents/Information-resources/MND-Aspects-of-Care-2017-FINAL-(1).aspx 
7. Boentert, M. 2019. “Sleep disturbances in patients with amyotrophic lateral sclerosis: current perspectives.” Nat. Sci. Sleep 11: 97–111. doi: 10.2147/NSS.S183504.
8. MND Association of England, Wales and Northern Ireland, 2016. “End of life care: A guide for people living with MND,” MND Association of England, Wales and Northern Ireland, United Kingdom.
9. Mohanty, I., Niyonsenga, T., Cochrane, T. and Rickwood, D. 2020. “A multilevel mixed effects analysis of informal carers health in Australia: the role of community participation, social support and trust at small area level.” BMC Public Health, 20(1): 1801. doi: 10.1186/s12889-020-09874-0.

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