Anxiety high in ALS patients, family members in months after diagnosis

Severity tends to ease with time for patients but not relatives, often caregivers

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Anxiety is common among people newly diagnosed with amyotrophic lateral sclerosis (ALS) and their family members, a small study from Sweden reports.

However, symptoms of anxiety tended to ease about six or so months later for patients, while they continued to affect relatives, many who are caregivers, two years after the diagnosis. Depression was less common, but its symptoms held stable for affected patients and relatives, underscoring the importance of ongoing support and attention to mental health.

“A better understanding of and knowledge on the prevalence of anxiety and depression from the time of diagnosis and over time … will probably contribute to better and more efficient care during the disease trajectory,” the researchers wrote.

The study, “Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory,” was published in the Journal of the Neurological Sciences.

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Anxiety evident in 43% of ALS patients, 58% of relatives soon after diagnosis

ALS damages nerve cells in the brain and spinal cord, making it difficult to control muscle movement. As the disease progresses, a patient’s ability to perform basic tasks, such as walking up steps, getting in and out of bed, or speaking audibly, become more and more impaired.

Being diagnosed with ALS and watching how it affects daily life can be taxing. Because patients usually retain their cognitive skills, they are aware of their progressive physical loss, and the distress and mental health challenges that brings both them and their relatives.

To learn more, researchers with Uppsala University followed 33 newly diagnosed patients — 28 with limb-onset and 5 with bulbar-onset disease — and 33 of their chosen family members for two years. Among relatives, 25 were a patient’s spouse, six were a patient’s children, one was a parent, and one a sibling.

Participants were asked to fill out the self-reported Hospital Anxiety and Depression Scale (HADS) shortly after the diagnosis and again at six, 12, 18, and 24 months later. This two-part test assesses the presence and severity of anxiety and depression in the past week, and total scores for each part range from zero (no distress) to 21 (maximum distress).

Assessments taken between one and three months after a diagnosis showed symptoms of anxiety in almost half of patients (45%) and a majority of their relatives (58%), indicating that anxiety at this stage “is relatively common,” the researchers wrote.

Patients’ average level of anxiety severity decreased significantly, starting around six months after diagnosis. But scores remained stable at high levels among family members, suggesting that “the disease affected the relatives’ psychological well-being more,” they wrote.

Depression was less common than anxiety in these groups, affecting 13% of patients and 29% of relatives in the initial months. In both groups, the average score of its severity was similar (4.6 vs. 5.2 points) and did not change significantly over time.

“Relatives are often involved in the patient’s care, taking great responsibility for them and dedicating many hours to help,” the researchers wrote. However, “few relatives received antidepressant and/or anxiolytic [anti-anxiety] treatment.”

Disease’s progressive toll not tied to an increase in anxiety or depression

Physical function was assessed using the revised ALS Functional and Rating Scale (ALSFRS-R). While scores significantly decreased over the two years of follow-up, patients’ increasing physical difficulties did not link with more symptoms of anxiety or depression.

“It could … be that during the disease trajectory, the patient adapts to the disease and the changes that result [from it], which may explain the decrease in symptoms of anxiety despite the increased physical impairment,” the researchers wrote.

While the number of people involved was small, study “results showed that many patients and relatives suffered from symptoms of anxiety quite soon after the diagnosis, and that many relatives had symptoms of anxiety during the disease trajectory,” the researchers concluded.

“This highlights the need to continuously measure symptoms of anxiety/depression in patients but also to pay attention to symptoms among relatives,” they added.