Blog Post from the ALS Association

Combating Malnutrition for People with ALS: It Takes a Team

Nutrition is not just important, but essential for every living being. For humans, how we nourish our bodies plays a vital role in growth and our ability to live a healthy life. While it is important for everyone to practice good nutritional habits, it is perhaps even more significant for people living with ALS.

This week is Malnutrition Awareness Week, a good time to take a look at the nutritional challenges faced by people with ALS and how, working together, we can combat them.

“Malnutrition is defined as getting too few or too many nutrients resulting in health complications,” said Mary Love, a registered dietitian with experience working with people with ALS. “When we discuss malnutrition and ALS, the concern is undernutrition, which is a lack of macro and micronutrients resulting in unintentional weight loss, muscle wasting and weakness.”

ALS is a progressive disease and so a person that has been diagnosed may see malnutrition at various stages of that progression.”

Among the challenges faced by people with ALS is that their bodies have to work harder than the typical individual. As the nerves that communicate with the muscles begin to break down, the body starts to work overtime to compensate for the breakdown. Called hypermetabolism, this increases energy needs, and this overtime work also causes fatigue, making it even more challenging to get the calories needed.

Because of hypermetabolism, a high-calorie diet is usually recommended for people living with ALS. But getting these calories can be easier said than done as ALS presents challenges with swallowing and chewing (dysphagia), and limb weaknesses can lead to a physical inability to feed oneself.

“There are many ways to combat these complications through the use of adaptive equipment,” said Love. “For example, a person with progressing hand weakness may benefit from a universal cuff to hold a utensil; this allows the wrist to control plate-to-mouth movement rather than relying on the dexterity of fingers. The use of a daily nutrition supplement such as Ensure can also help to maintain weight and fill in the gaps of a decreased appetite.”

There are also many different ways to prepare foods that can help make mealtimes easier. Choosing softer foods like rice, pudding or apple sauce that require little chewing, for instance. Other foods can be pureed in a blender with water, milk, almond milk, or soup. Dry foods can be made easier to swallow using sauces, gravies, dips, and dressings.

Family members and caregivers can assist with combating malnutrition for a person with ALS through learning how to adapt their current environment and routine to meet the needs of the person.”

Another key resource in combating malnutrition is a multidisciplinary care team. “A person with ALS faces many symptoms concurrently, so there is a challenge in managing these symptoms all at once,” Love said. “The multidisciplinary care team can provide tools and solutions to combat these within each expert’s scope of practice. All of these disciplines working together help a person with ALS combat malnutrition from every direction.”

For example, dietitians can conduct nutrition assessments to identify malnutrition, calculating needs and educating individuals on the use of feeding tubes as the disease progresses. A speech language pathologist can conduct swallow studies to assess swallowing ability and make diet modification recommendations, and can also provide education and recommendations on communication tools and devices.

A social worker can help address food insecurity and the individual’s living environment. Physical and occupational therapists can help adapt the environment and provide techniques and tools for energy conservation, and a neurologist can provide medications for symptom management related to excessive saliva, constipation, as well as provide guidance on feeding tube placement.

While family and caregivers will also play a role in assisting with nutritional needs, Love points out that in addition to focusing on the food, they shouldn’t forget to pay attention to the meal as well. “Mealtime should remain a social and pleasurable activity.” Love said. “Food brings us together and can serve as a great way to connect with family and friends.”

Your ALS care team is always available to help you navigate your individual nutritional needs to combat malnutrition. For more information about maintaining proper nutrition and ALS, visit our website HERE.

Additional resources you might find helpful include:

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