ALS Care Plan

ALS is the most common type of motor neuron disease. It has no known cure, but there are many ways to treat the symptoms.

Many ALS patients will need help caring for themselves as the disease progresses, but with help, this can often be done in the patient's home. In fact, patient outcomes are better when people receive comprehensive and compassionate care in their own homes.

If you have been diagnosed with ALS or are a CDPAP caretaker for an ALS patient, below you can find more information on how the disease progresses and what you can expect from an ALS care plan.

What is ALS?

ALS stands for amyotrophic lateral sclerosis. The disease causes a person's nerves to degenerate and lose their ability to function normally. The neurodegeneration affects the brain and spinal cord and therefore leads to a loss of ability to move the body's limbs, most commonly the hands and feet.

ALS affects a person's mobility and causes progressive muscle weakness. This can eventually lead to difficulty speaking, swallowing, and even breathing, and may paralyze a patient. Unfortunately, the disease symptoms worsen over time, and researchers have not yet found a way to reverse the damage. However, a good home care plan can help lessen and delay the most severe effects.

ALS is also referred to as Motor Neuron Disease (MND) or Lou Gehrig's Disease

What causes ALS?

Both genetics and environment likely play a part in the onset of ALS. Still, scientists do not yet know the specific cause of the disease.

Studies have found specific gene mutations that are common among ALS patients. In many cases, those who suffer from the disease have also been exposed to environmental toxins at some point in their life. However, this is not the case for everyone and there's no known way to avoid the disease entirely.

ALS affects people all over the world, regardless of sex or ethnicity. It can manifest at any age, although it is more common among older adults between the ages of 55 and 75. It does appear to be more common among military veterans, possibly because they are more likely to be exposed to toxins during war. 

Signs of ALS

ALS occurs in stages. Muscle weakness and muscle loss (or atrophy) happen in the earliest stages of the disease. This can cause mobility issues, and patients may experience spastic movements in the hands and/or feet or in an isolated area of the body. However, the symptoms spread throughout the body over time.

Patients may not know they have ALS right away. However, as muscles become weaker and they experience tiredness and loss of balance, they may suspect they need to see a doctor. By the time the patient has trouble speaking (for example, slurring their words) or walking, a doctor will have a good idea that ALS is a possible cause.

In the next stage of the disease, patients will begin to experience whole-body muscle weakness and isolated paralysis. In addition, people with ALS can experience cognitive and behavioral changes and the inability to control reactions such as laughing, crying, or yawning.

While they may be able to carry on many everyday activities, most patients will need assistance when they have trouble swallowing and breathing. This can cause people with ALS to be more prone to accidents, such as falls.

A patient with late-stage ALS will lose the ability to move all of their muscles, including those required for breathing. The level of care they need will increase dramatically in late and end-stage ALS, and the average survival rate for the disease is approximately 2-5 years. While it’s rare, some patients live as long as 10 years after their diagnosis.

Diagnosing ALS

There is no single official test that will tell a person that they have ALS. A doctor will diagnose the disease based on the health history the patient gives them. They will conduct tests to rule out other disorders and perform neurologic tests along the way to gauge the progression of muscle weakness and wasting.

The muscle and imaging tests performed by doctors to assess the progression of ALS include:

-          Electromyography (EMG) to detect electrical activity of muscle fibers.

-          Nerve conduction study (NCS) to evaluate a nerve's ability to send signals to the muscles.

-          Magnetic resonance imaging (MRI) to view detailed brain and spinal cord images.

Complications associated with ALS

If you or a loved one has received an ALS diagnosis, it's important to know what to expect as the disease progresses. This will help you decide how much home care is needed and at what point a person might require a full-time caregiver or hospitalization.

The complications of ALS include:

Breathing issues

When respiratory muscles become affected by the disease, patients lose the ability to breathe comfortably. They may need to use a device at night. This BiPAP is similar to devices worn by those with sleep apnea and will ensure that the brain gets ample oxygen.

Speaking problems  

ALS will eventually attack bulbar neurons, which are responsible for sending signals to the muscles that move the lips, tongue, jaw, and voice box. While speech problems may be mild at first and include slurring, the patient will likely need to use alternate forms of communication in the later stages of the disease.

Problems eating

Because our muscles also control our ability to swallow, when they are damaged by ALS, patients are at risk for malnutrition and dehydration. When ALS patients eat or drink, they also have a higher likelihood of getting food or saliva into their lungs, which can lead to infections such as aspiration pneumonia.

In late-stage ALS, patients will likely require a feeding tube.

Dementia

Some people with ALS develop problems with memory and decision-making. Some patients may be diagnosed with frontotemporal dementia, but it does not happen to everyone with ALS.

Developing a care plan for someone with ALS

A person diagnosed with ALS will eventually need full-time care. Some of the costs may be covered by public or private insurance or VA benefits for veterans.

It will be critical for the caregiver to work with the patient's doctor to develop the care plan that best suits their needs and allows a person with ALS to remain independent as long as possible. The key is maintaining quality of life.

Care plans will generally include the following features

Therapies

The three most common therapeutic approaches to patients with ALS include:

-          Physical therapy to help maintain range of motion and give patients tools that help them adjust to their disabilities.

-          Occupational therapy to teach coping and energy conservation techniques. These may allow ALS patients to adapt to new ways of performing tasks so they can be self-sufficient as long as possible.

-          Speech therapy to instruct patients in methods to slow or articulate their speech and preserve their communication skills.

Support

ALS patients often require nutritional support to maintain weight and sustain their quality of life. Good nutrition and attention to hydration can help extend a patient's life, so acknowledging issues involved with feeding and swallowing are best dealt with immediately. Eventually, a feeding tube or enteral nutrition (aka IV nutrition) may be necessary.

Breathing care has obvious benefits for maintaining an ALS patient's health and energy. Respiratory therapists can teach patients new skills, test their breathing, and help remediate any deficiencies by instructing patients in new breathing techniques.

Both ALS patients and their families (especially caregivers) can benefit from psychological and social support. Finding a therapist or a support group can play a crucial role in accepting new realities and roles within the household.

Nursing management

A nursing care plan can involve administering any of the therapies listed above as well as helping patients and families cope with the realities of ALS. A caretaker can provide nursing features that are both medical and social in nature. 

For example, because ALS patients retain their mental agility, they may help engage them in intellectually stimulating activities to help maintain morale. They can also help teach the patient's family about the course of the disease and what to expect.

Managing ALS patients' care can involve other (potentially unexpected) services. These include engaging the patient in conversations that enhance body image, promoting self-care, and fostering dialogue about coping mechanisms, especially in the face of a poor prognosis.

More formal nursing care involves helping patients maximize their functional abilities and prevent complications from immobility. Nurses will also help assess and ensure adequate nutrition and prevent respiratory complications. They can also teach caregivers how to perform many of these duties.

ALS patients require a comprehensive care team in the later stages of their disease. In addition, their loved ones need to be knowledgeable about what to expect after a diagnosis of ALS. These are just some of the reasons it’s essential to keep the lines of communication open between the family (including caregivers) and the patient's medical team.