Giving care to a person living with motor neurone disease (MND) can mean having to learn a lot quickly.
Getting the right information at the right time can make a big difference. Knowing what support is available can also help.
You may not think of yourself as a carer. You might think of yourself as a partner, family member or friend. However you see yourself, you still play an important role in caring for a person living with MND.
The tools and information on this page are for anyone who supports a person living with MND – family members, friends and carers. This includes professional carers and support workers.
On this page:
Early signs of motor neurone disease can be hard to notice, and vary from person to person. Symptoms may occur at a different rate, or in a different order.
Healthcare professionals can help the person you care for to manage discomfort, pain, mobility, and other aspects of MND.
To find out more, the Newly diagnosed page is a good place to start.
You can also visit Managing day to day for general information on ways to manage common challenges in daily life. These include:
Cramps and pain
Staying mobile
Managing fatigue
Physical activity
Over time, the person living with MND will need more help with daily life. This means the support you provide may also change.
Your State MND Association gives advice and local support to people living with MND, their family and friends.
support to find and access healthcare, NDIS and My Aged Care
MND information and education
equipment advice and loans (assistive technology or AT)
support groups, including groups for carers
Call the MND Info Line on 1800 777 175 (9am to 4.30pm Monday to Friday) to link with local support.
Caring for a person living with MND can involve arranging and attending medical appointments with a lot of healthcare professionals.
Sometimes, the person may need urgent care outside of clinic hours. This may involve an ambulance, or going to the emergency department (ED) at hospital.
The information and tools below help you prepare for health appointments, and make going to hospital less stressful.
Preparing for health appointments
On this page you will find useful information to help you:
get the information you need
make and keep track of appointments
support a person living with MND to get to their appointment safely
support a person to ask questions and record answers
provide emotional and practical support.
Planning for emergency care
On this page you will find useful information to help you:
prepare for emergency care
get help in an emergency
get extra support in an emergency department.
Communicating needs
Practical tools to help a person living with MND make others aware of their needs, wants and preferences.
My Care Needs: A 2-page interactive and printable pdf form with space to record a person’s specific needs with MND.
MND Hospital Bedside Alert: This 1-page interactive and printable A4 lets medical staff know about your high priority care needs with MND. It can be posted on the wall above your bed, or at the bedside.
Other useful links
Over time, the person living with MND will need more help with daily life. This means the support you provide may also change. You may find yourself doing tasks or extra work around the home.
Additional support is available to assist with household care, equipment and home modifications (eg. custom-built changes like ramps that help a person access and use parts of the home). Getting support early can improve day-to-day life for the person living with MND, and reduce the load for the people who care for them.
See these pages to find out more:
Equipment and home modifications: Aids and equipment can help people living with MND stay independent for longer. Home modifications can help people to stay at home. Government funding may be available. State MND Associations also offer equipment loans.
Government support and benefits: An overview of the main forms of government support, including:
Types of help at home: Help at home includes domestic support, personal care and respite. Find out more from your state MND Association.
When speech changes with MND, carers play a big role in making conversations easier, calmer, and less tiring.
See Carer Guides: Speech and communication in MND for detailed information about caring for a person with changes in speech (dysarthria).
Topics include:
Practical tips, advice and support
Communication tools and technology options
Who can help
How to repair conversation breakdowns
How to use PAS (partner assisted scanning)
How to stay connected when speech gets harder
How to talk to someone using eye-gaze
Daily checklists and more
You can also watch these videos to help prepare for changes, and find out what you can do as speech gets harder.
Family members and carers may be involved in supporting breathing, making decisions about ventilation and in helping with the everyday use of NIV.
If you support a person using NIV, ask your healthcare team what support and training are available.
To find out more about supporting breathing and NIV visit the pages below:
You can also watch this video: NIV and impact on carers
MND can affect the muscles in the mouth and throat. This can cause problems with swallowing. When a person’s ability to swallow changes, it can lead to problems with eating, drinking, coughing and saliva control.
Early signs of swallowing problems include:
coughing or choking when eating
dribbling saliva, and
problems with chewing and swallowing.
If it is harder to eat and drink, a person may lose weight, have less energy or not get enough fluids. Drinking less, moving less and taking certain medicines can also contribute to constipation.
There are ways to help prevent and manage these changes. Considering a feeding tube when meals get harder or more tiring can help. Having a feeding tube fitted early can make the operation safer, and help maintain weight and nutrition.
A speech pathologist or dietitian can advise about food choices and preparation to make swallowing easier and discuss when a feeding tube should be considered. Your healthcare team can also help you manage constipation.
To find out more about supporting swallowing, nutrition and bowel health visit the pages below:
Preventing and managing constipation (coming soon)
A collection of guides you can download to read offline or print. Print copies of some guides are also available from your State MND Association.
Guides include: