Up to 80% of people with ALS/MND may experience difficulty swallowing which can make it difficult to drink and eat. The trouble with swallowing happens gradually for most people with ALS/MND.
Approximately 20-25% of people with ALS/MND experience bulbar onset of ALS/MND. This means that the muscles for speaking, swallowing, and breathing are the first to be affected.
When swallowing is impaired, regardless of the underlying disease, it is referred to as dysphagia. For people with ALS/MND, dysphagia is often a symptom due to the loss of properly working nerves and muscles. This can result in aspiration, which means that the food, liquids, and saliva may enter the airway and result in coughing, choking, or potentially, a bacterial infection in the lungs.
People living with ALS/MND can work with their multidisciplinary healthcare team to continue eating and drinking meals they enjoy safely.
The multidisciplinary healthcare team for nutrition and swallowing can include:
- Speech-Language Pathologist (SLP)
- Registered Dietitian/Nutritionist (RDN)
- Occupational Therapist
- Gastroenterologist
- Respiratory Therapist
- Dentist
This healthcare team can support some common issues that occur with nutrition and swallowing for people with ALS/MND. Common problems include weight loss, poor appetite, swallowing and chewing difficulties, dehydration, constipation, thick saliva, and chest infections. Together, they can implement strategies and management plans to assist with feeding, nutrition, swallowing, and preventing infection.
If a person living with ALS/MND struggles with the above issues, their healthcare team may recommend a feeding tube. Feeding tubes ensure that a person receives adequate nutrients and fluids and can be used in addition to oral intake of food. They can have many benefits for people living with ALS/MND, including maintaining their strength and energy.
For more information on nutrition and swallowing, refer to the resources provided below.
Click on the icon below to visit our playlist of videos related to Nutrition and Swallowing.
The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Nutrition and Swallowing.
What Can a Dietitian Do For You?
The ALS Centrum Nederlands provides information on the role of a dietitian as part of the multidisciplinary healthcare team for people living with ALS/MND.
https://www.als-centrum.nl/kennisplatform/wat-doet-de-dietist/
Language: Dutch
Subject Areas: Multidisciplinary Healthcare Team, Dietitian, Nutrition and Swallowing, For People with ALS/MND, For Caregivers
Adjusting to Swallowing Changes and Nutritional Management
This extensive guide was created by the ALS Association (ALSA). People living with ALS/MND and caregivers can find information on the mechanisms behind swallowing and how the progression of ALS/MND impacts it. This guide provides information on what an individual’s multidisciplinary healthcare team may look like to support swallowing and nutrition through ALS/MND. Additionally, this resource provides a general overview of the importance of nutrition for people with ALS/MND, including meal substitutions and dietary considerations specific to people with ALS/MND.
https://www.neals.org/uploads/blog/doc/Swallowing_Changes_in_ALS.pdf
Language: English
Subject Areas: Swallowing, Navigating Nutrition, Healthcare Team, For People with ALS/MND, For Caregivers
Eating and Drinking with MND
This extensive guide was developed by the MND Association (MNDA) in the UK. It provides in-depth information on all aspects of swallowing and nutrition. People with ALS/MND can learn more about what changes to expect regarding food and eating. There is information on who to contact as part of your multidisciplinary healthcare team, as well as different tools and strategies that make eating easier and more enjoyable. This resource also provides various recipes catered to the nutritional needs and adjustments for people with ALS/MND.
https://www.mndassociation.org/app/uploads/Eating-and-drinking-guide-2020-V1.pdf
Language: English
Subject Areas: For people with ALS/MND, For Caregivers, Nutrition and Swallowing, Recipes for ALS/MND, Multidisciplinary Healthcare Team, Tools and Strategies for Eating
Dysphagia
This is a resource provided through ALS Schweiz for people with dysphagia and healthcare professionals. It supplies information on all stages of dysphagia. These include identifying signs and symptoms of dysphagia, strategies for eating, talking, and swallowing with dysphagia, and external resources that may be of further benefit.
https://www.dysphagie.ch/deutsch/infos-f%C3%BCr-fachleute/links-leitlinien/
Language: German, French, English
Subject Areas: Swallowing, Speech, Dysphagia, For people with ALS/MND, For Caregivers, For Healthcare Professionals, Education
What to do When Choking
A collection of information and educational videos that demonstrate what to do when a person with ALS/MND has trouble swallowing or is choking is provided by the ALS Centrum Nederland. This resource is a good reminder or refresher for caregivers and healthcare professionals of the steps to take when a person with ALS/MND is choking.
https://www.als-centrum.nl/kennisplatform/filmpjes-over-verslikken-bij-als/
Language: Dutch, English
Subject Areas: Swallowing and Nutrition, Choking, For Caregivers, For Healthcare Providers
Tube Feeding
The MND Association (MNDA) created an informative resource for people living with ALS/MND and caregivers about feeding tubes. This resource can help answer common questions for people with ALS/MND. This resource provides details on what a feeding tube is and how they work. It also discusses when a person may need to consider a feeding tube and the changes that may occur when fitted with a feeding tube.
https://www.mndassociation.org/app/uploads/2021/01/7B-Tube-feeding.pdf
Language: English
Subject Area: Nutrition and Swallowing, Feeding Tubes, Healthcare Professionals, For People with ALS/MND, For Caregivers, Education
myTube
This resource may help individuals with ALS/MND learn more about feeding tubes, how they are fitted, and what life may look like after a feeding tube has been fitted. There is also a section for caregivers to learn more about feeding tubes and their role. Additionally, this resource shares people’s stories with ALS/MND from both people living with ALS/MND and caregivers.
Language: English
Subject Area: Nutrition and Swallowing, Feeding Tube, Education, For People with ALS/MND, For Caregivers
Maintaining Good Nutrition
The ALS Association created this guide to provide an excellent summary on nutrition and swallowing for people living with ALS/MND and caregivers. Topics include the fundamentals of nutrition and nutritional aspects that people living with ALS/MND should consider. There are also tips and strategies for common issues that people living with ALS/MND may face when preparing, eating, and swallowing food.
https://www.als.org/sites/default/files/2020-04/Maintaining%20good%20nutrition%20with%20ALS.pdf
Language: English
Subject Areas: Nutrition and Swallowing, Dietitians, For People with ALS/MND, For Caregivers
Recipes For ALS/MND
A list of easy recipes for breakfast, lunch, dinner, and snacks for people living with ALS/MND.
https://www.als.org/navigating-als/resources/fyi-high-calorie-and-easy-chew-recipes
Language: English
Subject Areas: Nutrition and Swallowing, For People with ALS/MND, For Caregivers
Culinary Care for ALS – A Nutritional Kit
The ALS Society of Quebec is proud to offer you its nutritional kit entitled “Culinary care for ALS”. Aimed at people with ALS, their caregivers and healthcare professionals, it includes specialized content to help families meet changing nutritional needs during their journey with ALS.
https://www.als.org/navigating-als/resources/fyi-high-calorie-and-easy-chew-recipes
Language: English
Subject Areas: Nutrition and Swallowing, For People with ALS/MND, For Caregivers
ALS & Nutrition
Good nutrition and hydration are very important for people living with ALS. People living with ALS burn more calories because of the increased energy used in breathing, moving and muscle twitching. You may have challenges with low energy, maintaining weight and decreasing muscle mass. Proactively addressing your challenges can result in greater energy, strength and independence. If you are having trouble eating, drinking, or taking medicine on your own, you may not be able to get all of the nutrition your body needs. This can lead to weight loss, infections, and other health problems down the road. This guide walks you and/or your caregivers through proactive strategies to maintain weight.
https://lesturnerals.org/wp-content/uploads/2021/10/Nutrition-Guide-Final.pdf
Language: English
Subject Areas: Nutrition and Swallowing, or People with ALS/MND, Care and Support Guides and Manuals