Caregivers

Learn Care Skills

Hands-on care should be taught and practiced with the ALS team or another qualified professional who understands the person’s current abilities and equipment.

Breathing and respiratory equipment

Ask the respiratory therapist or ALS team to demonstrate the person’s prescribed equipment, interfaces, cough-assist or suction routine when applicable, cleaning and supply questions, backup-power plan, and what changes require a call.

Do not change ventilator settings, add oxygen, or improvise a respiratory plan from general online instructions.

Open Breathing and ALS

Sources: Care Worker Module · Caregiver Resources

Feeding and swallowing

A speech-language pathologist and dietitian can teach safe positioning, texture or consistency recommendations, fatigue planning, feeding-tube care when relevant, and what signs should be reported. Choking, coughing with meals, dehydration concerns, or weight change deserve prompt clinical attention.

Open Eating & Swallowing

Sources: Caregiver Resources · Care Worker Module

Communication

Communication may use speech, writing, alphabet boards, phone tools, voice banking, message banking, eye-gaze, switches, or other AAC. Ask a speech-language pathologist about a plan that works when the person is tired, short of breath, or unable to use their hands.

Open Communication and AAC

Sources: Caregiver Resources · Care Worker Module

Transfers, mobility, and positioning

A physical or occupational therapist should assess transfers, bed mobility, falls, seating, pressure protection, and equipment. A caregiver should not be expected to manually lift a person when the task exceeds safe capacity; a transfer aid or mechanical lift may be safer when prescribed and taught.

Open Mobility and Transfers

Sources: Care Worker Module · Caring and MND: Support for You

Personal care

Bathing, toileting, dressing, skin care, and repositioning can change as strength and fatigue change. Ask occupational therapy, nursing, or a trained aide to demonstrate the safest setup and to identify when another person or equipment is needed.

Open Equipment and Home Adaptations

Sources: Care Worker Module · Caregiver Resources

Training questions

  • Can I demonstrate this task back to you?
  • What should I do if the person becomes tired, frightened, short of breath, or unable to participate?
  • What is the backup plan if equipment fails or a second caregiver is unavailable?
  • When should the task be reassessed as strength or function changes?

Sources: Care Worker Module

Sources & Further Reading

These source cards link directly to the original material. External websites open in a new tab.

Caregiver information is educational and does not replace individualized instruction from the ALS team, a licensed clinician, an employer or benefits professional, or an emergency response system.

Caregiver information last reviewed: 09-30-2026

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