Mouth and dental health

A clean, comfortable mouth supports speaking, enjoying food and drinks, and overall health. Looking after your mouth can also help prevent:

• tooth decay (damage to your teeth)

• gum disease

• mouth sores and

• oral thrush (a fungal infection in the mouth)

• urgent dental treatment.

An oral healthcare team and other healthcare professionals support good mouth and dental care.

Use these tips to keep your mouth healthy:

• Brush your teeth morning and night: make sure you include your gumline (where your teeth meet your gums).

• Ask your oral healthcare team, speech pathologist, or another member of your healthcare team for advice.

• Try using a soft, small-headed toothbrush with a small amount of low-foaming toothpaste (toothpaste that makes less foam).

• Ask about a safe way to clean between your teeth: check with your oral healthcare team or OT to see whether a floss holder or interdental brush (a small brush made to clean between teeth) is right for you.

• Clean your tongue gently: stop if you gag, cough, or feel uncomfortable.

• Loosen sticky saliva and bits of food left in the mouth with a bicarbonate mouth solution (a mild mixture of bicarbonate of soda and water). Ask your oral healthcare team which recipe and method to use.

• Remove and clean dentures (false teeth) daily, and seek advice if they feel loose, are painful, or rub. See Adjusting to mouth changes when you wear dentures [anchor link].

• Check your mouth each day for sores, swelling, bleeding, trapped food, and signs of oral thrush [anchor link].

• Sit in a comfortable position that helps you breathe and swallow. See Swallowing and breathing changes and mouth care [anchor link].

• Stop and rest if you become tired, worried, upset, or breathless.

Stop cleaning if you have pain or heavy bleeding, and speak with your oral health professional.

Mouthwash, gum and other products

If you use mouthwash, gum, or other products, ask your oral healthcare team, pharmacist, or speech pathologist for advice. They can advise you about safely using products that meet your needs.

Good mouth and dental care is supported by an oral healthcare team, which may include the following:

• a dentist – specialist in treating conditions that affect the mouth, teeth, jaw, and gums

• dental hygienist – promotes mouth health and helps to prevent disease

• an orthodontist – specialist in jaw, bite and teeth alignment

• a periodontist – gum specialist

• an endodontist – root canal specialist

• dental prosthetist – makes and fits dentures and mouthguards.

Other specialists, such as a speech pathologist and occupational therapist (OT), can also support mouth and dental care for people living with MND.

Speak to your dentist or another member of your oral healthcare team for dental and mouth care support, including:

• toothache

• broken or loose teeth

• a denture that is loose, painful, broken, or hard to remove

• mouth ulcers

• bleeding or swollen gums

• dry mouth

• repeated thrush

• a mouth problem that affects communication or chosen eating and drinking.

Contact your MND clinic, speech pathologist, occupational therapist or respiratory team if you notice any of the following:

• brushing gets harder

• changes in jaw, tongue or mouth control

• changes in swallowing or saliva

• changes in speaking

• changes in breathing, coughing or the ability to clear your mouth.

Call the MND Info Line on 1800 777 175 to contact your state MND Association [hyperlink]. Your MND Association can give you or your oral health professional information and advice about MND.

Call 000 in the case of an emergency and visit Planning for Emergency Care [hyperlink]

Weakness in your hands or arms may make it hard to hold a toothbrush, lift your arm or squeeze toothpaste.

Some tips that can help make brushing easier are:

• Ask an occupational therapist to help you choose and set up equipment to support your needs, for example, a grip aid or universal cuff (a strap worn around the hand to hold a toothbrush when grip is weak).

• Support your elbow or forearm: Try resting on a stable support while you brush, such as a table or a firm armrest on your wheelchair.

• Use a different toothbrush: Try a battery-powered or electric toothbrush, or a toothbrush with a larger handle.

• Go hands-free: Use a pump toothpaste dispenser or ask someone to put toothpaste on your brush.

• Brush when you have more energy, or do it in smaller sessions, resting in between.

• Seek help early: Ask for help if you need support controlling the toothbrush or denture, or reaching different parts of your mouth.

“I can still use my battery-operated toothbrush, but holding my arm up for that long is tiring. Resting my elbow on something attached to the wall helps.” — Person with lived experience of MND

See Equipment for mouth care [anchor link] on this page for more

Over time, it may get harder to open your mouth, move your tongue, or spit. Food, plaque (a sticky layer of germs), and toothpaste may stay in your cheeks. You may bite your tongue while eating or brushing your teeth. These changes can also affect the way your dentures fit, if you wear them.

Try these tips to help you adjust to changes:

• Use a soft toothbrush with a small amount of toothpaste: Ask your oral healthcare team for suggestions.

• Check your mouth each day: In good light, check the cheeks, tongue, and under dentures for trapped food, bite marks, and sores.

• Try a mouth prop to help keep your mouth open. Ask an oral health professional and speech pathologist for advice.

• Choose the right time of day when you have more energy.

• Ask for support: Positioning and head support can make swallowing and breathing easier and help with brushing.

• Get regular check-ups: Ask your dentist to check for sharp teeth, broken fillings, denture fit, and repeated biting. See Preparing for dental appointments [anchor link] on this page for more.

Adjusting to mouth changes when you wear dentures

MND may affect how your dentures fit and feel. Hand, arm, mouth, or jaw weakness can make dentures hard to handle.

Ask your dentist or dental prosthetist for help early if you notice any of the following changes:

• weight loss

• dentures are loose, broken, or sharp

• dentures feel painful or are rubbing

• it’s harder to control your mouth or head

• it’s harder to insert or remove dentures

• dry mouth

• thicker saliva

• new swallowing or cough problems.

You should also seek advice from a dentist or dental prosthetist before:

• starting or changing a feeding tube (PEG)

• starting or changing non-invasive ventilation (NIV).

Mouth care may be more challenging when swallowing, breathing, or talking gets harder.

You may worry about coughing, becoming short of breath, or choking during everyday mouth care. If talking becomes harder, there are other ways to communicate.

When swallowing and breathing get harder:

• Ask a speech pathologist or OT to show you and your carer a mouth care routine that matches your needs.

• Support your head and body in a position recommended by your healthcare team.

• Use a small amount of water and toothpaste.

• Ask your team whether someone should stay with you during mouth care.

• Take your time and pause if you repeatedly cough, cannot clear fluid or bits of food in your mouth, have trouble breathing, or lose the position that supports your head, breathing and swallowing.

• Ask for a denture review if a denture becomes loose or moves out of place during communication, mouth care, eating or drinking. A loose denture may move towards the back of the mouth if your cough is weak or you cannot clear your mouth.

When you use a feeding tube (PEG)

Oral health and mouth care are important even if you use a feeding tube (PEG) to get the food and fluids you need. Ask your dentist or speech pathologist for advice on caring for your mouth and teeth when you use a feeding tube.

When speech becomes harder:

• Use agreed signals: PAUSE or STOP.

• Agree how you will show pain or discomfort before mouth care starts.

• Keep communication tools close by where they can be reached.

• Ask yes-or-no questions and ask for time to answer.

If you use NIV (non-invasive ventilation)

Dentures and NIV

Dentures can affect how well your NIV mask seals. If you use NIV during sleep, ask your oral health professional and respiratory team whether to remove your dentures.

Dry mouth and NIV

An oral swab is a small sponge or foam head attached to a handle. It can moisten the mouth and remove bits of food when brushing is not possible. It does not remove plaque as well as a toothbrush.

• Ask your dentist, oral health professional, or speech pathologist to recommend a swab and show you how to use it.

• Check that the swab head is firmly attached. Never leave a swab loose in the mouth.

• Moisten the swab. Do not soak it. Gently wipe the cheeks, gums, tongue, and roof of the mouth.

• Keep the swab at the front of your mouth, and avoid pushing it toward the back of your throat.

• Stop if you cough, gag, become breathless, or feel uncomfortable.

Saliva changes are common in MND. Thin saliva may pool or cause drooling as swallowing weakens. Thick saliva may feel sticky or become hard to clear. These changes can affect mouth care.

Thin saliva or drooling

• Use the position and head support your healthcare team recommends.

• Use oral suction as recommended by your team, and only if they have trained you, your dentist, or your carer. Oral suction uses a device to remove saliva, fluid and bits of food from the mouth.

Thick, sticky or frothy saliva

• Follow a gentle mouth care routine as recommended by a dentist, oral health professional or speech pathologist.

• Use a moist oral swab which may help loosen bits of food stuck in your mouth or teeth.

• Use a recommended bicarbonate mouthwash and method approved by your healthcare team. A bicarbonate solution is a mild mixture of bicarbonate of soda and water.

Managing dry mouth

Medicines, saliva treatments, mouth breathing, non-invasive ventilation (NIV) and low fluid intake can cause or worsen dry mouth. Dry mouth increases the risk of tooth decay and oral thrush. It can also make dentures less comfortable or more likely to move.

If you have dry mouth:

• Tell your dentist, oral health professional or a member of your healthcare team.

• Ask your healthcare team to review your medicines and saliva treatments.

• Use recommended mouth gels, sprays or lip moisturisers on advice from your oral health professional or pharmacist.

• Ask about extra fluoride to strengthen teeth and more frequent dental checks.

• Ask for a denture check if a denture rubs or becomes loose.

Identifying and managing oral thrush

Changes in saliva and dry mouth can increase the risk of oral thrush, a fungal infection in the mouth. Dentures, some medicines, and reduced mouth care can also increase the risk. Oral thrush can cause discomfort but can usually be treated.

What to look for:

• white or cream patches that may wipe away and leave a red or sore area

• a red, shiny or burning mouth or tongue

• cracks or redness at the corners of the mouth

• pain, changed taste or trouble wearing dentures

• new discomfort when eating, drinking, swallowing or doing mouth care.

What to do:

• Contact a dentist, GP, nurse or pharmacist as soon as you notice changes. They can check whether it is thrush or another mouth problem.

• Use antifungal medicine only as directed. Antifungal medicine treats fungal infections, including oral thrush. Tell your pharmacist if swallowing tablets, liquids or lozenges is difficult.

“Thrush caused my dad a lot of discomfort. Without Mum’s health experience, he may not have known what was wrong or that it could be managed. He might have thought it was another part of MND that could not be helped.” — Family member

Equipment may make dental and mouth care easier and less tiring. It may also help you control the toothbrush, clear toothpaste and saliva, and maintain a position that supports breathing and swallowing. Ask your oral healthcare team, speech pathologist, or occupational therapist about your options.

Some examples include:

• a battery-powered or electric toothbrush

• a small-headed soft toothbrush

• a built-up handle or other grip aid such as a universal cuff (a hand strap that can hold a toothbrush)

• an arm or elbow support and non-slip mat

• a pump, hands-free or one-handed toothpaste dispenser

• floss holders or interdental brushes (small brushes made to clean between teeth)

• good lighting and a small mouth mirror

• a single-use oral swab [anchor link] (a small sponge or foam head on a handle) recommended by your healthcare team

• a mouth prop (a device that helps keep the mouth open) can be used with guidance from a dentist or oral health professional to confirm that it will not damage your teeth or jaw or affect breathing or swallowing.

Visiting the dentist can be daunting when you are living with motor neurone disease (MND). You may be concerned about getting your healthcare needs met, or you may not feel safe.

Preparing for your appointment before you go can help you get care that suits you. You know your needs and preferences, and your own body better than other people.

Preparing for your appointment

Tell the clinic you have MND when you book your appointment, and let them know about any changes since your last visit.

Ask about access, including options for:

• step-free access

• parking

• door width

• wheelchair space

• accessible toilets.

If you use a wheelchair: ask whether the dentist can treat you in your wheelchair. If not, ask what transfer equipment, space and assistance are available.

If you use NIV: ask whether NIV can stay in place during the appointment. The dentist may need advice from your respiratory and swallowing teams before treatment.

To manage fatigue: Ask about shorter appointment, rest breaks and book at a time of day when you have the most energy.

Getting the right dental care

For people living with MND, finding the right dental care can be hard. For example, not every dental clinic can treat a person while they remain seated in a wheelchair. Some clinics may not be able to support NIV or complex swallowing, breathing, or communication needs. In addition, if you live in a regional or rural area, you may have to travel long distances to get the right care.

Ask about other dental service options if the clinic cannot meet your needs. These may include:

• care at home

• a community clinic

• a dental service for people with complex disability or health needs, or

• a hospital dental service.

If you have concerns about getting the right dental care, speak to your MND advisor or your MND healthcare team about your options.

“I needed to make sure I was aware of parking. Is the access easy? Is there a ramp? Is there a lift if needed? I always had to check on that. I even remember going to one place where they said, “oh, yeah, yeah, we've got a disability toilet”, but the door didn't open enough.” – A family member with lived experience of MND

“I have a dental practitioner who visits my home every two months.” — Person with lived experience of MND

Going to your appointment

Information you may need to bring with you includes:

• details of your medicines and any allergies

• your MND, speech pathology and respiratory contacts

• a completed My Care Needs form.

During your appointment

Some information you may need to share with your dentist or oral health professional could include:

• how you communicate and your YES, NO, PAUSE and STOP signals.

• a comfortable position that helps you breathe and swallow, and any transfer needs

• swallowing and breathing needs, including your saliva, suction, cough-support, and NIV plan

• if you wear dentures, recent changes in fit or comfort, how they are inserted and removed, and which upper and lower dentures you have

• what matters most to you during the visit – as the person living with MND you remain central to decisions, even when a supporter speaks for you.