Strategies to Cope with ALS Need to Address Depression and Anxiety Together, Study Says

Depression and anxiety in amyotrophic lateral sclerosis (ALS) patients, even at low levels, are linked and should be addressed together, a study reports.

Moreover, according to the study, support to caregivers is essential as the patient-caregiver relationship is of key importance in coping with ALS.

The study, “Death Anxiety and Depression in Amyotrophic Lateral Sclerosis Patients and Their Primary Caregivers,” was published in the journal Frontiers in Neurology.

The progressive nature of ALS causes patients to rapidly become either totally or partially dependent on their caregivers. However, how this close contact affects the state of mind of both patients and caregivers remains largely unknown.

So a team of researchers examined this close relationship in terms of depression and anxiety scores to assess how much patients and caregivers are influenced by the mindset of their respective counterpart.

They interviewed 30 pairs of patients (13 women and 17 men, mean age of 60.57) and their primary caregivers (16 women and 14 men, mean age of 57.33) followed at an outpatient clinic specializing in ALS.

Researchers evaluated signs of depression, general anxiety, and death anxiety in both patients and caregivers.

Depression was assessed using the Beck Depression Inventory, a scale ranging from zero to 63, where scores up to 12 indicate a lack of depression, while higher scores indicate increasing severity of depression.

The State-Trait Anxiety Inventory, ranging from 20 to 80, was used to assess anxiety, with scores from 20-39 indicating low anxiety, 40-59, medium anxiety, and 60 and above, high anxiety.

Death anxiety was evaluated with the BOFRETTA-Scale, which contains 25 questions related to attitudes and anxiety about death.

The Caregiver Strain Index, a questionnaire composed of 13 direct questions (requiring only yes or no answers) was used to assess the strain on caregivers and identify its causes, either due to loss of sleep, changes in private life, or bothering behavior.

Results showed that, although the rates for depression, anxiety, and death anxiety were rather low in ALS patients, they all correlated with each other.

In caregivers, depression and anxiety were also low and linked to each other, although the levels of anxiety were higher than in ALS patients.

Results also showed that anxiety in caregivers was not linked to death, but rather to other parameters, like “the development of the loved one’s disease and whether the own person will be able to fulfill the caregiving role further onward,” according to the researchers.

“These concerns should thus be tackled with sufficient support in the form of auxiliary means for the patient and perhaps even the hiring of professional nursing services,” they said.

Disease severity measured via the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised showed no correlation with depression or anxiety in caregivers. However, the researchers found that caregiver strain relates to disease severity.

“Although depression, anxiety, and death anxiety are not particularly common in ALS patients, we found that they widely correlate with each other and should be addressed altogether,” the researchers wrote.

“The relation of patient and caregiver and their respective mind-sets play a significant role in coping with the disease and therefore should be considered in medical and psychotherapeutic interventions,” the study concluded.