Understanding Depression and ALS

While it can be common for people to have depressed reactions about being diagnosed with amyotrophic lateral sclerosis (ALS) or to have emotional responses to physical setbacks or worsening of ALS symptoms, this is different from clinical depression.

Clinical depression is a serious condition that can significantly impact quality of life and physical health. It can, in turn, affect ALS symptoms.

While there are not many studies exploring the prevalence of depression among people living with ALS, the existing studies show a significant amount of people living with both conditions. Treating both is essential for overall wellness and optimal quality of life.

A 2022 study found that approximately 25% of people living with ALS also had depression. Both are serious conditions that necessitate treatment. It’s important that treatment teams screen for depression and other mental health conditions when treating illnesses and not minimize them as a typical response to a new diagnosis.

This article will explore the connection between ALS and depression and how one diagnosis can affect the diagnosis and treatment of the other.

The Connection Between ALS and Depression

A diagnosis of ALS can be emotionally overwhelming, and a person may experience depression and/or anxiety about what is to come, plus any other unknowns. As the disease progresses, the loss of functioning can impact quality of life, causing depression. If social support is lacking, one can become isolated, further increasing the risk of depression.

Symptoms of ALS, like fatigue or loss of appetite, can also mirror depression symptoms.

Latest Research

Depression has been associated with a higher risk of developing ALS, particularly for those over age 65, although it is not known why. It may be a prodromal symptom of the condition, or a result of the stress of testing or subclinical symptoms prior to the actual diagnosis.

People diagnosed with ALS also have a significantly increased risk of developing depression in the first year after diagnosis. One study found a 16.5 times increase in risk.

Emotional well-being was associated with slower disease progression in one study, but more longitudinal studies need to be done on this association.

Complications of ALS and Depression

Depression in itself can interfere with health due to a lack of self-care, reduced appetite, impaired sleep, reduced adherence to treatment plans, and social isolation. When paired with another condition, it can further complicate matters.

Depression has been found to impact the quality of life of people with ALS, including their overall health and mental and emotional well-being. A reduced quality of life has nothing to do with the extent of physical impairment. When quality of life is impaired, the overall effect is negative, further reinforcing things like social isolation, depression, and despair.

Loss of appetite and subsequent weight loss in people with ALS are associated with depression. ALS itself can cause loss of appetite and weight loss. Changes in body weight after diagnosis can impact survival.

Adequate nutrition and caloric intake is important, and depression can interfere with this, causing further complications.

Diagnosis of ALS and Depression

There is no one test that provides a definitive diagnosis of ALS. The symptoms can mimic other conditions, so it’s important to rule out different diseases for an accurate diagnosis. A neurologist is a specialist who explores all of the presenting symptoms, along with a detailed medical history.

Based on this information, they may order a variety of tests to evaluate muscles, nerves, and other systems to further rule in or rule out diagnoses. Tests may be done at various intervals to see whether symptoms are progressing. These tests can include:

• Electromyography (EMG): Detects muscle fiber electrical activity and can help with an ALS diagnosis
• Nerve conduction study (NCS): Looks at the ability of a nerve to send a signal along the nerve to a muscle
• Magnetic resonance imaging (MRI): Imaging technique to get images of the brain and spinal cord
• Blood and urine tests: To rule out other conditions
• Muscle biopsy: Removal of a small piece of the muscle to be analyzed in the lab, can provide information about whether the symptoms are due to another condition and not ALS
  

A general physician or mental health professional can diagnose mental health conditions like depression or major depressive disorder. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, or DSM-5, is used to make and confirm a diagnosis.

Self-Test for Depression

It’s important to get an accurate diagnosis from a healthcare provider or mental health professional, but if you are worried that your symptoms might be more than just initial difficulty with a diagnosis or persistent sadness, a self-test can be a good motivator to get help. An online self-test is not a substitute for a professional diagnosis.

For people with ALS, it’s especially important to get a professional diagnosis because some of the symptoms of depression (like fatigue or changes in appetite) can be caused by the ALS itself. A medical professional can determine whether you have clinical depression, and work with you on appropriate treatment.

If you’re looking for a self-test to get an outside take on your symptoms and to better talk with your healthcare provider about what’s going on, the self-test from Mental Health America is easily accessible. Another self-test is available from Kaiser Permanente.

Treatment of ALS and Depression

ALS is treated by a multidisciplinary treatment team made up of professionals from a variety of areas, including pharmacists, therapists (occupational, physical, and speech), physicians, psychologists, nurses, and more.

Treatment includes medications for ALS and accompanying symptoms, physical and occupational therapy, communication support, nutritional therapy, and breathing support. Treatment depends on the specific symptoms you are having and what is happening with the disease.

Depression is generally treated with a combination of medication and psychotherapy. The medication and type of therapy may vary, depending on the situation and the person.

Depression may affect ALS treatment because some medications used for each condition may interact with each other and cause serious side effects. Always let your healthcare providers know what medications you are on so they can work with you to find the most appropriate medication for you and your situation.

Medications

Depending on your symptoms and your needs, you may be on different medications for your ALS. Depression is often treated with antidepressants, and there are various kinds. The specific kind of antidepressant may depend on other symptoms that are present. Commonly prescribed antidepressants include:

• Elavil (amitriptyline)
• Remeron (mirtazapine)
• Selective serotonin reuptake inhibitors (SSRIs)

Talk with your healthcare providers about your symptoms of depression, your current symptoms of ALS, and any medication you are on. This way, they can prescribe the appropriate medication for you to minimize any adverse interactions.

Psychotherapy

Psychotherapy can help people with depression adjust their ways of thinking and change their behaviors to help ease their symptoms. There are different kinds of psychotherapies, but two kinds are often used for depression:

• Cognitive behavioral therapy (CBT): This therapy teaches people how to question and change patterns of thinking and behavior that reinforce depressive feelings.
• Interpersonal therapy (IPT): This kind of therapy helps people improve communication skills, develop support networks, and recalibrate their expectations for events in their lives.
  

Coping With ALS and Depression

Living with either ALS or depression can be challenging, but dealing with both conditions at the same time can be even more so. There are ways to cope with the conditions and manage the symptoms. If you are having a difficult time, tell your treatment team(s).

Lifestyle Changes

While these lifestyle changes can be helpful and even help to make symptoms more manageable, both ALS and depression require treatment from a medical professional to get the best outcome and disease management.

Dietary changes may benefit people with ALS and depression, although this should not be used as treatment. One study found that a higher intake of fiber, antioxidants, and carotene from fruits and vegetables was associated with better functioning in people with ALS.

People whose diets are higher in fiber, citrus fruits, and vegetables have also been found to have a lower risk of ALS. Increased meat intake has been associated with a higher risk of ALS, and diets higher in milk and milk-based foods have been associated with worse functioning in ALS.

Healthy diets help with overall health and wellness and have also been shown to help with depression. Diets with lots of fruits, vegetables, lean meats, and fish, and low in processed foods, are associated with a reduced risk of depression.

Support Groups

If you’re looking for in-person support groups for ALS, the ALS Association has a tool for finding local support groups. The patient-led organization I Am ALS offers weekly virtual support groups for people living with ALS and those impacted by the disease. Your treatment team may also know of local support groups, especially those run by the treatment center.

Support groups for depression, either online or in-person, can also be helpful. Mental Health America has an online support forum called Inspire. For those who prefer in-person, Mental Health America’s local affiliates can assist in finding local support groups.

The Anxiety & Depression Association of America search option for support groups by state and support topic may also be useful.

Summary

While it is normal to have an emotional reaction to being diagnosed with ALS, clinical depression is more than that. Depression can cause multiple complications with your health, impact your quality of life, and affect ALS progression.

Clinical depression needs medication and therapy to be effectively treated. Along with appropriate treatment, healthy lifestyle changes like an improved diet and social support through support groups can help people living with both ALS and depression.

A Word From Verywell

Symptoms of depression don't necessarily have to be part of your ALS experience. It is possible to feel better, treat your symptoms, and get support. Talk with your treatment team about what’s going on and what you are feeling. There is treatment available, and you don’t have to do this alone.