Eating and drinking with acknowledged risk

Weight loss is a common symptom in MND, driven by difficulties with eating and drinking, muscle wasting, and increased energy expenditure. It can result in:

• greater muscle weakness and reduced physical strength
• increased fatigue
• impaired immune function
• reduced skin integrity
• discomfort when sitting or lying due to reduced cushioning over bony areas
• reduced quality of life
• reduced suitability for procedures such as gastrostomy insertion.

This can increase carer burden, particularly where additional meal planning, preparation and repositioning are required.

Strategies

• Refer to a dietitian for specialist assessment, dietary advice, and guidance on oral nutritional supplements where appropriate.
• If weight loss is linked to reduced oral intake, consider fortifying meals and snacks to increase nutritional value.
• Encourage small, frequent meals and snacks.
• Include energy- and protein-rich fluids such as smoothies, milkshakes, and oral nutritional supplements.
• Where appropriate, discuss gastrostomy or other non-oral feeding options to supplement intake.
• Offer practical strategies to support food preparation and mealtimes.
• Liaise with a speech and language therapist to ensure the least restrictive texture modification is used.
• Seek input from physiotherapy or occupational therapy for optimal positioning during meals.

Malnutrition is a serious condition that occurs when the body does not receive the right balance of nutrients. It can lead to:

• increased muscle weakness
• reduced immune function
• impaired skin integrity
• greater fatigue
• changes in mood
• slower recovery from illness or injury
• increased carer burden due to additional meal planning and preparation.

Strategies

• Refer to a dietitian for specialist assessment, tailored dietary advice, and guidance on oral nutritional supplements where appropriate.
• Encourage foods that are nutrient-dense and appropriate to individual needs.
• Consider discussions around gastrostomy or other non-oral feeding options to support or supplement oral intake.

Dehydration is a significant concern in MND, often due to swallowing difficulties and reduced ability to maintain adequate fluid intake. Weakness of the muscles involved in swallowing can make drinking more difficult, increasing the risk of dehydration.

Dehydration can result in:

• thickened oral secretions that are more difficult to clear
• increased risk of infection
• changes in bowel function, including an increased risk of constipation
• oral discomfort, including dry mouth (xerostomia) and ulceration.

Strategies

• A dietitian can provide advice on maintaining adequate fluid intake, such as drinking little and often, keeping fluids readily accessible, and choosing nourishing fluids such as milk, smoothies or homemade milkshakes.
• A dietitian can also advise on foods with a high fluid content, such as soups, casseroles, stewed fruit, ice cream and custard.
• A speech and language therapist or occupational therapist can recommend cups, straws or other equipment to support fluid intake and promote independence.
• A physiotherapist or occupational therapist can provide advice on optimal positioning during drinking.
• Consider discussions with the healthcare team about gastrostomy or non-oral feeding to support hydration, nutrition and medication administration where appropriate.

Oral hygiene is the practice of keeping the mouth clean and free from disease through regular care such as brushing and other oral health routines.

While MND does not directly affect oral health, its progressive nature can make maintaining oral hygiene increasingly difficult. Muscle weakness, along with bulbar and respiratory involvement and fatigue, can reduce a person’s ability to carry out effective mouth care. This may lead to dental decay, gum disease, and an increased likelihood of tooth extraction.

Poor oral hygiene can result in:

• difficulty eating and drinking
• increased risk of aspiration pneumonia
• higher risk of infection
• pain and discomfort in the mouth
• reduced mood, confidence, and self-esteem.

Providing mouth care can also become challenging for carers, particularly if there is reduced mouth opening.

Strategies

• Ask the neurologist to review medications and provide advice on secretion management and jaw clamping.
• If using non-invasive ventilation (NIV), the respiratory team can advise on humidification, alternative masks, and cough augmentation strategies.
• Maintain regular mouth care of the teeth, gums, and tongue using a soft-bristled toothbrush. Consider mild or low-foaming toothpaste if the mouth is sensitive or secretions are difficult to manage.
• Ensure regular dental check-ups where possible. Explore access to community dental services if needed.
• Work with a speech and language therapist for advice on alternative techniques or adaptations for oral care, such as smaller or softer toothbrushes and the use of oral suction (following clinical assessment).
• Consider positioning advice from physiotherapy or occupational therapy to support safe and effective mouth care.

Managing dry mouth (xerostomia)

Trial different options based on individual preference, allowing time to assess benefit:

• mouth sprays (for example Saliveze, Oralieve, Biotene, BioXtra)
• pastilles (for example Salivix; Xylimelts). Xylimelts are designed to stick to the teeth or gums and slowly release saliva substitute. Use with caution due to a potential choking risk if they become dislodged, and avoid use overnight.
• oral care products such as alcohol-free mouth rinses, moisturising gels, ultra-mild toothpaste, and lip care products
• applying small amounts of oil (for example coconut or olive oil) inside the mouth for lubrication.

For further information, see our guidance for health and social care professionals: Information for dental teams
 

Fatigue is a common symptom in MND, resulting from progressive muscle weakness and the increased effort required to carry out everyday activities. This can have a significant impact on eating and drinking.

Fatigue can result in:

• higher risk of choking with increased fatigue
• reduced nutrition and hydration intake, increasing risk of weight loss
• increased risk of dehydration
• longer mealtimes and extended food preparation.

Strategies

• A speech and language therapist can advise on modified food consistencies (such as soft or pureed diets) to reduce fatigue associated with chewing.
• Encourage eating earlier in the day when energy levels are higher.
• Promote small, frequent meals rather than three larger meals.
• If weight loss occurs due to reduced portion sizes, refer to a dietitian for advice on food fortification and the use of oral nutritional supplements where appropriate.
• An occupational therapist can recommend adaptive equipment such as specialist cutlery, cups, or mobile arm supports to reduce fatigue during mealtimes.
• Discuss gastrostomy or non-oral feeding options with the healthcare team to support nutrition, hydration, and medication administration. Many people with MND use a combination of enteral feeding and oral intake to reduce the burden of meeting all nutritional needs orally.

Difficulty swallowing can make it increasingly challenging for individuals with MND to take medications safely and effectively. This may require careful consideration and adaptation to ensure optimal symptom management while reducing the risk of aspiration and other complications.

Medications are often initially prescribed in tablet form, which can become harder to manage as swallowing difficulties progress.

Medication access can be affected by:

• impact on symptom control if unable to take medication safely
• increased risk of choking
• fear and anxiety associated with taking medication
• reduced independence due to upper limb weakness requiring assistance
• oesophagitis caused by tablets sticking in the throat
• emotional distress.

Strategies

• Ask the GP to consider alternative formulations where available (such as liquids, patches, gels, or suppositories). A pharmacist can provide advice on suitable options.
• If taking tablets or capsules orally, seek a speech and language therapist's advice on administering medications with an appropriate consistency (for example thickened fluids or puree).
• Discuss medication access with the healthcare team, including the option of gastrostomy or other non-oral routes to support safe and effective medication administration.

Choking occurs when the airway becomes partially or completely blocked, making it difficult or impossible to breathe. In MND, swallowing difficulties increase the risk of choking on food, fluids, or saliva.

There are two types of choking: partial airway obstruction (mild) and complete airway obstruction (severe).

Choking can result in:

• fear and anxiety
• emotional distress
• respiratory distress
• reduced quality of life
• hastened deterioration or death (though death directly attributable to choking is uncommon in MND)
• increased carer burden.

Strategies

• A speech and language therapist can advise on modified food and fluid consistencies (such as soft or pureed diet, thickened fluids) to reduce choking risk.
• A speech and language therapist can also provide guidance on safe swallowing strategies and recommend appropriate cups or equipment to support safer eating and drinking.
• Instrumental swallowing assessments (for example videofluoroscopy or FEES) may be carried out to determine the safest consistencies and management strategies.
• Ask the GP or consultant neurologist to prescribe medications in formulations that are easier to swallow to reduce choking risk.
• Provide carers with education on choking management. The St John Ambulance website offers practical guidance on choking.

See also our information for professionals working in acute, urgent and emergency care.

Pneumonia is inflammation of the lungs, usually caused by an infection (bacterial, viral, or fungal). It leads to a build-up of fluid in the lungs, making breathing difficult and often causing symptoms such as fever, cough, and shortness of breath.

In MND, the risk of pneumonia (particularly aspiration pneumonia) is increased due to swallowing difficulties and reduced cough effectiveness.

Symptoms of pneumonia can develop suddenly or gradually and may include cough (with phlegm), shortness of breath, high temperature, chest pain, fatigue, reduced appetite, and confusion. Find out more about symptoms of pneumonia on the NHS website.

Pneumonia can result in:

• feeling unwell
• reduced tolerance of oral nutrition and fluids
• increased fatigue
• hospital admission
• increased anxiety about eating, drinking, and aspiration risk
• antibiotic resistance with recurrent infections
• increased carer burden.

Strategies

• A speech and language therapist can advise on modified food and fluid consistencies (such as soft or pureed diet, thickened fluids) to reduce the risk of aspiration pneumonia.
• A dietitian can review nutritional intake, hydration status, and the need for supplements.
• Keep vaccinations up to date, including influenza and COVID-19.
• The GP can prescribe antibiotics promptly if pneumonia is suspected and may provide anticipatory (‘just in case’) medications where appropriate.
• The medical team or GP can review medications to ensure they remain appropriate and consider alternative formulations (such as liquid or dispersible) if needed.
• The respiratory team or physiotherapist can support airway clearance and reduce aspiration risk through techniques such as breath stacking or cough assist devices.
• The palliative care team can support symptom management and advance care planning where appropriate.
• Discuss gastrostomy or non-oral feeding options with the healthcare team to support nutrition and hydration and potentially reduce the risk of recurrent aspiration pneumonia.

Laryngospasm is a condition in which the vocal cords suddenly and involuntarily spasm, temporarily closing the airway. This can make it difficult to breathe or speak.

Episodes can be highly distressing for the individual, which may further worsen symptoms. Fear of recurrence can also lead to reduced oral intake.

Laryngospasm can result in:

• increased anxiety
• changes in ability to communicate or call for help
• impact on breathing
• distress for carers, who may feel the need to provide constant supervision due to fear of recurrence.

Strategies

• Provide education to the individual and carers about potential triggers, including oral intake, excess saliva, positioning, strong smells, emotional responses, and changes in temperature.
• Refer to the MND team or palliative care team for assessment and support with secretion management.
• Ask the GP to assess for and manage possible reflux, which may contribute to symptoms.
• Seek assessment from occupational therapy or physiotherapy to optimise positioning.
• The GP or consultant may consider prescribing medication where appropriate (for example benzodiazepines) to help manage symptoms and associated anxiety.

Anxiety is a feeling of worry, tension, or fear, often related to current or future situations. In MND, anxiety can be associated with eating, drinking, and the progression of symptoms.

Anxiety can result in:

• anxiety around eating and drinking
• anxiety related to receiving support from others
• reduced oral intake due to fear or distress
• social withdrawal
• over-modification of diet and avoidance of foods or fluids that may reduce quality of life.

Strategies

• Identify the underlying cause of anxiety to guide management.
• The GP or consultant may consider prescribing medication where appropriate.
• A speech and language therapist can help reduce anxiety around eating and drinking by exploring flexible and personalised approaches, such as adapting intake based on time of day or fatigue levels.
• Consider referral to palliative care or psychology services for additional emotional and psychological support.
• Provide advice on coping strategies, including grounding techniques.

Managing the risks associated with eating and drinking in MND can have a significant emotional, psychological, and social impact. Understanding these challenges can help individuals and carers recognise when support is needed and identify strategies to improve coping and wellbeing.

Difficulties with eating and drinking may lead to anxiety and fear, particularly around choking or aspiration. This can result in avoidance of meals, reduced nutritional intake, and potential weight loss. Changes to diet, increased monitoring, and reliance on others may also contribute to stress, low mood, and reduced sense of independence or dignity.

Socially, eating and drinking are often central to shared experiences. Difficulties in these areas can lead to embarrassment, withdrawal from social situations, and reduced engagement with family and friends. This can also affect carers, who may feel uncertain or overwhelmed in providing support.

These challenges can result in:

• anxiety around eating and drinking
• anxiety related to receiving support from others
• social withdrawal
• increased carer burden
• increased stress and emotional exhaustion
• feelings of isolation.

Strategies

• Encourage open discussion of emotions and concerns with family, carers, and the healthcare team.
• Identify underlying causes of anxiety or distress to guide appropriate support.
• Consider referral to psychological services or counselling for additional support (for example Acceptance and Commitment Therapy (ACT), mindfulness, or other therapeutic approaches).
• The palliative care team can provide support with emotional wellbeing and coping strategies.
• A speech and language therapist can help reduce anxiety by providing education, reassurance, and flexible approaches to eating and drinking.
• Signpost to support organisations such as the MND Connect helpline and relevant peer or carer support groups.
• Encourage use of coping strategies such as grounding techniques to help manage anxiety in the moment.

See also our information on emotions, thinking and behaviour for people with MND.

In MND, some individuals experience changes in cognition and behaviour, which can affect thinking, insight, decision-making, language, and eating behaviours.

Reduced awareness of swallowing difficulties can increase the risk of choking and aspiration. Changes in behaviour and understanding may also affect how a person approaches eating and drinking.

These changes can result in:

• taking large mouthfuls or overfilling the mouth
• changes in food preferences (often a preference for sweeter foods)
• difficulty engaging with recommended swallowing strategies
• increased frustration
• need for supervision during eating and drinking, increasing carer burden.

Strategies

• Arrange a cognitive assessment with an appropriately trained professional (such as a neuropsychologist).
• A speech and language therapist can advise on modified food and fluid consistencies and provide practical strategies to support safer eating and drinking.
• If weight loss is identified, refer to a dietitian for specialist assessment, dietary advice, and consideration of oral nutritional supplements.
• Reduce distractions and adapt the mealtime environment to support focus.
• Provide supervision and use verbal or non-verbal prompts to guide eating and drinking.
• Ensure food and drinks are clearly visible (for example, use clear cups).
• Support initiation of eating, such as placing cutlery in the person’s hand or using hand-over-hand assistance where appropriate.
• Use smaller utensils (such as teaspoons) if large mouthfuls are an issue.
• Cut food into smaller pieces to reduce the risk of overfilling the mouth.

See also our information on cognitive change and frontotemporal dementia. You can direct people with MND to our pages on emotions, thinking and behaviour.

In MND, individuals may experience difficulties with eating and drinking due to reduced hand and arm control, reduced mobility affecting food preparation, and fatigue related to weakness or breathing difficulties. These challenges can make eating and drinking more effortful and may reduce independence.

These difficulties can result in:

• reduced independence and increased reliance on others, affecting quality of life
• reduced nutritional and fluid intake, increasing risk of weight loss
• increased fatigue associated with eating and drinking
• increased carer burden due to the need to assist with food and drink or meal set-up.

Strategies

• A physiotherapist or occupational therapist can provide advice on optimal positioning during mealtimes.
• An occupational therapist can recommend adaptive equipment, such as specialist cutlery, cups, or mobile arm supports, to promote independence and reduce fatigue.
• Consider discussions with the healthcare team regarding longer-term feeding options, including a combination of oral and non-oral approaches where appropriate.

In MND, progressive muscle weakness often affects the respiratory muscles, impacting breathing and cough effectiveness. This can make eating and drinking more challenging, particularly when coordinating breathing and swallowing.

Respiratory function should be regularly assessed by the specialist team. Non-invasive ventilation (NIV) may be recommended to support breathing, typically delivered via a mask.

Changes in respiratory function can result in:

• difficulty coordinating breathing and swallowing
• reduced cough strength
• fear of removing NIV to eat or drink
• longer mealtimes due to increased effort
• increased carer burden, particularly with managing NIV during meals.

Strategies

• A speech and language therapist can advise on techniques to support coordination of breathing and swallowing and may recommend foods requiring less chewing.
• The respiratory team or physiotherapist can introduce airway clearance techniques such as breath stacking or a cough assist device.
• The GP, neurologist or palliative care team can support symptom management including breathlessness, anxiety and secretion management.
• An occupational therapist can provide advice on positioning, including adjustable chairs, postural support and energy conservation strategies.
• If using NIV, the respiratory team can advise on alternative masks or interfaces to support eating and drinking.
• Refer to a dietitian for specialist assessment, dietary advice and oral nutritional supplements where appropriate.
• Discuss gastrostomy or non-oral feeding options with the healthcare team if there is increasing reliance on NIV during the day.

See also our information for professionals on respiratory symptoms in MND. You can direct people with MND to our information on breathing and ventilation.

A range of health and social care professionals may be involved in supporting people with MND who are eating and drinking with acknowledged risk. Support should be tailored to the person’s needs, wishes and symptoms.

Neurologist: a consultant specialising in conditions affecting the brain and nervous system. They support assessment, diagnosis, symptom management and care planning.

Consultants in other specialties: depending on symptoms and needs, support may also be provided by consultants specialising in areas such as respiratory medicine, gastroenterology or palliative care.

Neurology or MND specialist nurse: provides specialist advice, information and support for people living with MND and those involved in their care.

MND care co-ordinator: helps co-ordinate care between the person with MND, multidisciplinary team, community services and the MND Association. This role may be undertaken by a specialist nurse or another professional, such as an occupational therapist or physiotherapist.

Dietitian: supports nutrition, hydration, weight management and decisions around tube feeding.

Speech and language therapist (SLT): assesses and manages swallowing and communication difficulties. SLTs often work closely with dietitians to support eating and drinking decisions.

Occupational therapist (OT): provides advice on posture, positioning, equipment, seating and adaptations to support comfort, safety and independence.

Physiotherapist: supports symptom management, positioning, mobility, respiratory management and appropriate exercise or assisted movement.

Specialist palliative care team: provides support with symptom management, advance care planning, emotional wellbeing and quality of life. This may include hospice care, community support or outpatient services.

Pharmacist: advises on medication management and alternative formulations, such as liquid medicines or patches, where swallowing tablets becomes difficult.

Neuropsychologist: supports assessment and management of cognitive, behavioural and emotional changes associated with MND, and can support adjustment and decision-making.

Dentist and dental team: support oral health, mouth care and management of dental problems that may affect comfort, eating or swallowing.

You can find further guidance on symptom management for professionals in the Management of MND section. You can direct the people with MND in your care to our Living with MND information hub.

Nutrition, hydration and tube feeding

• Swallowing, eating and drinking information for people with MND
• Dysphagia in MND information for professionals
• myTube - explores tube feeding through video and information content.

Choking and emergency management

• Resuscitation Council UK choking algorithm
• St John Ambulance choking guidance
• MND in acute and emergency care
• EmergencySMS service registration