Assistive Technologies for ALS Care

Developing Efficient BCIs

• Researchers are developing more efficient, mobile, and auditory-based Brain-Computer Interfaces (BCIs) for individuals with severe paralysis and/or visual impairments.

Nutritional Support

• Nutritionists can teach individuals and caregivers how to plan and prepare small meals throughout the day that provide enough calories, fiber, and fluid.
• They can also advise on how to avoid foods that are difficult to swallow.
• Suction devices can be used to remove excess fluids or saliva and prevent choking.
• Feeding tubes may be inserted to reduce the risk of choking and pneumonia.

Breathing Support

• Noninvasive ventilation (NIV) can be delivered through a mask over the nose and/or mouth to improve the quality of life and prolong survival for people with ALS.
• NIV may only be necessary at night initially, but may eventually be used full-time.
• Mechanical ventilation (respirators) may be used as the disease progresses, which involves a machine inflating and deflating the lungs.
• A breathing tube may be inserted through the mouth or surgically created through a tracheostomy.

Nursing Management

• Comprehensive nursing care with holistic elements can help positively impact patients with ALS at the end of life.
• Holistic care can provide comfort during disease progression, especially during the end-of-life phase.

Complications of ALS

Breathing Problems

• ALS eventually paralyzes the muscles used to breathe.
• Breathing devices, such as bilevel positive airway pressure (BiPAP) devices, may be used to help with breathing at night.
• Some people with advanced ALS may choose to have a tracheostomy for full-time use of a respirator.
• Respiratory failure is the most common cause of death for people with ALS, occurring on average within 3 to 5 years after symptoms begin.

Speaking Problems

• Most people with ALS develop trouble speaking, which starts as occasional, mild slurring of words and becomes more severe.
• Speech eventually becomes difficult for others to understand, and people with ALS often rely on other communication technologies.

Eating Problems

• People with ALS can develop malnutrition and dehydration from damage to the muscles that control swallowing.
• They are also at higher risk of getting food, liquids, or saliva into the lungs, which can cause pneumonia.

Physical Effects

• Unused muscles may cause contractures, which can lead to rigid, painful, and sometimes deformed joints.
• Weakness in swallowing muscles can cause choking and greater difficulty eating and managing saliva.
• Weakness in breathing muscles can cause respiratory insufficiency, especially when lying down.
• Some people experience bouts of uncontrolled and inappropriate laughing or crying (pseudobulbar affect).

Late Stages of ALS

Muscles

• Most voluntary muscles are paralyzed.
• The muscles that help move air in and out of the lungs are severely compromised.

Physical Effects

• Mobility is extremely limited, and help is needed in caring for most personal needs.
• Poor respiration may cause fatigue, fuzzy thinking, headaches, and susceptibility to pneumonia.

End Stage of ALS

• The vast majority of deaths in ALS are the result of respiratory failure.
• Medications can relieve discomfort, anxiety, and fear caused by respiratory insufficiency.
• Less common causes of death in ALS include malnutrition, pulmonary embolism, cardiac arrhythmias, and pneumonia as a result of aspiration.