Psychological Factors, Experiences Affect ALS Caregivers’ Self-Reported Burden, Study Shows

Joana Fernandes, PhD avatar

by Joana Fernandes, PhD |

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Psychological factors and subjective experiences play a central role in the burdens felt by people who care for patients with amyotrophic lateral sclerosis (ALS), a new study says.

The study, titled “Caregivers of Patients With Amyotrophic Lateral Sclerosis: Investigating Quality of Life, Caregiver Burden, Service Engagement and Patient Survival,“ appeared in the Journal of Neurology.

Caregivers are crucial in dealing with a disease. They can provide intimate knowledge of a patient’s well-being, serve as legal and medical guardians, make decisions that affect a patient’s health and provide emotional support. Yet few studies have investigated caregiver burden and its association with patients with ALS.

An Irish study sought to determine the extent to which patient factors such as disease severity, site of onset, trajectory and level of clinical care influence caregivers’ experience of burden, and whether factors intrinsic to the caregiver also contribute to that burden.

The study enrolled 84 ALS patients and their primary caregivers. While patients were assessed with physical and cognitive measures specific to ALS (such as the Amyotrophic Lateral Sclerosis Functional Rating Scale, ALSFRS-R), caregivers were analyzed in terms of anxiety, depression, caregiver burden and quality of life. Researchers interviewed patients and their respective caregivers about their use of health services.

Caregivers were divided into two groups — 43 high-burdened caregivers and 41 low-burdened ones — according to the burden severity reported by each caregiver. The analysis revealed no significant differences between the two groups in several parameters including disease-specific characteristics, onset of bulbar or spinal ALS, disease duration or patient survival.

However, the study found differences in measures of anxiety, depression, distress and quality of life between the two groups. These results show that while ALS patient-related parameters have little impact on caregiver burden, psychological burden may play a crucial role on caregivers’ own health and quality of life.

“Based on these findings, we speculate that resilience, coping style, premorbid personality and support networks are important considerations in the provision of protective factors safeguarding low-burdened caregivers,” said researchers, noting that their results show that managing caregiver burden requires interventions directed at anxiety management, resilience-based strategies and certain mechanisms known to improve quality of life in both patients and caregivers.