All About ALS Home Care

Home care for ALS patients is a type of care that is provided in the patient's home by trained professionals. It includes a variety of services, mainly:

• Assistance with activities of daily living (ADLs), such as bathing, dressing, toileting, and eating
• Skilled nursing care, which includes wound care and pain management
• Respiratory care
• Physical therapy

Home care is essential for people with ALS, as it allows them to remain in their homes and communities for as long as possible.

Why ALS Home Care is Preferable 

There are several reasons why ALS home care is gaining traction (Jakobsson et al., 2017).

• Patient preference: Most people with ALS prefer to remain in their homes. Home care allows them to do this while still receiving their needed care.
• Quality of care: Home care provides high-quality care tailored to the patient. Home care providers also build relationships with their patients and families, which can lead to better care outcomes.
• Cost-effectiveness: Home care is often more cost-effective than long-term care facilities. That is especially true for patients who need only a few hours of daily care.

Categories of ALS Home Care

The following are the main categories of ALS home care (Gordon, 2011):

Nursing Care

Registered and licensed practical nurses, specialize in home health care and provide nursing care. They can help with a variety of tasks, including:

• Managing a tracheostomy and ventilator
• Providing nutrition via a feeding tube
• Assisting with communication devices
• Managing bowel programs
• Assisting with mobility and energy conservation
• Administering medications and treatments
• Educating patients and their families about ALS

Assistive Care

Assistive care is non-medical assistance with activities of daily living when the disease has made it difficult to manage everyday tasks on your own (Creemers et al., 2014). Home health aides, certified nursing assistants, homemakers, and companions provide this type of care. They help with tasks such as:

• Dressing and grooming
• Bathing and toileting
• Safe walking, repositioning, and transferring
• Meal preparation, eating, and nutrition
• Light housekeeping
• Shopping and errands
• Medication and appointment reminders

Therapeutic care

Therapeutic care includes occupational therapy,  physical therapy, speech-language pathology, and respiratory therapy (Mathis et al., 2017). These services can help patients manage their condition safely at home and increase their independence and comfort.

Hospice

Hospice offers a gentle, respectful, and peaceful end to the ALS journey. Hospice services include:

• Medical care and symptom and pain management
• Emotional and spiritual support to both patients and their loved ones.

15 Key Services Provided by ALS Home Caregivers

Assistance with Mobility

ALS caregivers can help ALS patients with mobility by:

• Transferring them between bed, wheelchair, and other surfaces
• Repositioning them to prevent pressure sores and muscle contractures
• Assisting them with walking, using a cane or walker, or getting in and out of a vehicle
• Providing them with emotional support and encouragement as they face the challenges of mobility loss

Personal Care

Caregivers can help ALS patients with personal care by:

• Bathing them
• Help them dress and groom
• Assisting them with toileting
• Oral hygiene
• Providing them with privacy and respect

Meal Preparation

ALS caregivers can help patients with meal preparation by:

• Preparing nutritious meals that are easy to swallow and digest
• Accommodating the patient's dietary needs and preferences
• Making the mealtime experience enjoyable and relaxing

Feeding Support

Caregivers can help patients with feeding by:

• Assisting them with using utensils
• Providing them with adaptive feeding devices
• Helping them maintain a healthy weight

Medication Management

Caregivers can help ALS patients with medication management by:

• Reminding them of medications on time
• Help them take their medications correctly
• Monitoring their medication side effects

Respiratory Care

ALS caregivers can help patients with respiratory care by:

• Monitoring their respiratory function
• Assisting them with the use of oxygen therapy or other respiratory devices
• Providing them with education and support on respiratory care

Communication Support

Caregivers can help patients with communication support by:

• Help them use alternative communication methods, such as communication boards or devices
• Advocating for their communication needs
• Providing them with emotional support and encouragement
• Emotional and Psychological Support

Caregivers can help ALS patients with emotional and psychological support by:

• Providing companionship and listening
• Help them cope with the emotional challenges of ALS
• Connecting them with resources and support groups

Pain Management

ALS caregivers can help patients with pain management by:

• Repositioning them to reduce pain
• Administering pain relief measures as prescribed by medical professionals
• Providing them with emotional support and comfort

Safety Measures

ALS caregivers can help ALS patients with safety measures by:

• Removing hazards from the home environment
• Installing mobility aids, such as grab bars and ramps
• Making necessary adjustments to the home to accommodate the patient's changing needs

In addition to the tasks listed above, ALS caregivers can also help patients with other activities of daily living, such as:

• Shopping
• Laundry
• Housecleaning
• Transportation

What to Look For in a Paid Caregiver

Choosing the right caregiver or agency is essential for ALS patients and their families. It is worth doing your research. Moreover, conduct a thorough interview process to find the best match.

Here are some tips for finding a paid caregiver for an ALS patient:

• Ask for recommendations. Talk to your ALS clinic, local ALS organization, family, and friends to see if they can recommend any caregivers or agencies.
• Look for experience. Find a caregiver who has experience working with ALS patients. ALS can be a complex disease, and caregivers need to be familiar with the unique challenges that ALS patients face.
• Interview multiple candidates. Once you have a few potential caregivers or agencies in mind, interview them to learn more about their experience, qualifications, and approach to care. Be sure to ask questions about how they would handle specific tasks, such as transferring the patient, managing medications, and providing emotional support.
• Check references. Once you have narrowed down your choices, check references from previous clients. That will help you gauge the caregiver's or agency's reputation and quality of care.

Here are some specific questions you can ask the caregiving agencies during the interview process:

1. What's Your Approach to ALS Patient Care?
2. How do you ensure your caregivers are well-prepared to assist ALS patients?
3. Do the caregivers have enough physical strength necessary for transfers?
4. What is your communication strategy with the patient's family?
5. Do you have specific hourly or weekly visit requirements?
6. How do you manage the assignment of regular caregivers?

Ultimately, you will want to choose a caregiver or agency that takes the time to understand your needs, really cares, has good communication skills, and pays attention to detail.

Additional tips:

• Discuss your budget with the caregiver or agency upfront.
• Ask about the caregiver's or agency's cancellation policy.
• Have a written contract in place before hiring a caregiver or agency.
• Communicate your needs and expectations to the caregiver or agency regularly.

As we navigate the challenges of ALS, it is essential to be informed about the available care options and to make choices that align with the individual's specific requirements. The dedication and expertise of home healthcare professionals ensure that ALS patients receive the support and care they require.

Ultimately, the collaboration between patients, caregivers, and healthcare professionals in home healthcare serves as a beacon of hope, enabling those affected by ALS to live with dignity, comfort, and the assurance of compassionate care.

References
Creemers, H., Beelen, A., Grupstra, H., Nollet, F., & Van den Berg, L. H. (2014). The provision of assistive devices and home adaptations to patients with ALS in the Netherlands: patients’ perspectives. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15(5-6), 420-425.
Gordon, P. H. (2011). Amyotrophic lateral sclerosis: pathophysiology, diagnosis and management. CNS drugs, 25, 1-15.
Jakobsson Larsson, B., Ozanne, A. G., Nordin, K., & Nygren, I. (2017). A prospective study of quality of life in amyotrophic lateral sclerosis patients. Acta Neurologica Scandinavica, 136(6), 631-638.
Mathis, S., Couratier, P., Julian, A., Vallat, J. M., Corcia, P., & Le Masson, G. (2017). Management and therapeutic perspectives in amyotrophic lateral sclerosis. Expert Review of Neurotherapeutics, 17(3), 263-276.