Prevention is the best option

Health tips for respiratory care in patients with amyotrophic lateral sclerosis (ALS)

Cures d'esclerosi lateral amiotròfica (ELA) a Vall d'Hebron

Amyotrophic lateral sclerosis (ALS) causes muscular degeneration that can affect motor autonomy, oral communication, swallowing and breathing, but the senses, intellect and eyes muscles remain intact. It can therefore affect the respiratory muscles, which is why respiratory care is essential for patients’ quality of life.

Description

What do you need to bear in mind if you have amyotrophic lateral sclerosis or you are caring for someone who does?

In order to improve the respiratory difficulties in patients, ventilation therapy can be used through non-invasive ventilation.

Ventilation therapy refers to breathing support using a ventilator, usually at night during sleep, to achieve:

  • A decrease in respiratory effort (feeling of fatigue)
  • Improved quality of life for patients with ALS  

Ventilation is carried out non-invasively, by means of a patient-adjusted mask (nasal or full face) connected by a tube to the ventilator or respirator.

When patients need this therapy, the place and time it is started, whether outpatient or hospital admission, is planned in a personalised way with the consent of the patient and the person caring for them.

Education for the patient and their main carer should begin as soon as possible, both from the point of view of managing secretions and the resulting care, as well as the emotional support they need to receive. This means that during the patient’s admission or outpatient visit, the patient and their carer will be trained in:

  • Correct use of a respirator  
  • Fitting and adjusting the mask  
  • Care to prevent possible skin sores
  • Hygiene 
  • Looking after the respirator 

The patient and the carer must take care to keep the airway in good condition to allow secretions to be managed. It is important to preserve the ability to cough where possible, but if coughing is no longer effective, the patient and carer will need to start learning how to use mechanical aids (cough assist or mechanically assisted cough). In certain cases secretion suction may also be used.

To improve the quality of life of patients it is important to follow the advice below:

  • Nocturnal ventilation: to be carried out daily, but gradual adaptation should be permitted until the patient is able to sleep through.
  • After eating, wait between one and two hours before ventilation.
  • Assisted cough should be done every day in order to maintain the skills learned by the patient and their carer, which will facilitate quick resolution of the situation if required.
  • All scheduled appointments should be attended where any doubts raised will be resolved.
  • Possible infections should be prevented: with flu and pneumococcal vaccinations according to medical advice, by going out in the sunniest hours of the day during the winter and the least sunny in the summer, and contact with people with respiratory infections should be avoided.
    • If signs or symptoms of respiratory infection appear (fever, increase or change in secretions, breathlessness, etc.) you should consult the healthcare team immediately.

 

Other related health information

  • Emotional support to patients and carers in ALS
  • Advice for preventing sores
  • Advice for patients with a tracheotomy
  • Advice for patients with problems swallowing
  • Documenting the patient’s wishes
   
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World ALS Day at Vall d’Hebron
World ALS Day at Vall d’Hebron
21.06.2017