Background:

Amyotrophic lateral sclerosis (ALS) is an incurable and disabling progressive neurodegenerative disease, where the caregiver plays a key role in meeting the patient’s needs.

Objective:

To analyze the association between caregivers’ sociodemographic and professional characteristics and their burden and between the sociodemographic and clinical characteristics of individuals with ALS and caregivers’ burden.

Methodology:

Descriptive-correlational study. Sample of 30 patients and 30 caregivers. The Informal Caregiver Burden Assessment Questionnaire was used. Parametric and non-parametric tests were used for data analysis.

Results:

The sample of patients had a mean age of 66.4 ± 11.17 years and homogeneous gender distribution. The majority of caregivers were women, spouses, with moderate levels of burden (56.7%), less affected by “reactions to demands” and more affected by “efficacy and control mechanisms” (mean 25.67 ± 21.76 and mean 66.39 ± 21.50). The caregiver’s sociodemographic characteristics, the patient’s functional status, the number of care hours, and the use of non-invasive ventilation were associated with burden levels (sig < 0.05).

Conclusion:

Caregivers have moderate levels of burden, highlighting the importance of proximity care.

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