The quality of life and depression in primary caregivers of patients with amyotrophic lateral sclerosis is affected by patient-related and culture-specific conditions

Abstract

Objective: To analyze the quality of life (QoL) and frequency of depression in primary caregivers of patients with amyotrophic lateral sclerosis (ALS) in two neighboring European countries. Methods: a cross-sectional study performed in 164 dyads of ALS patients and caregivers followed at clinical ALS centers in Poland and Germany between 2015 and 2018. The quality of life (Anamnestic Comparative Self-Assessment - ACSA, Quality of Life in Life-Threatening Illness - Family Carer Version - QOLLTI-F) and depression (ALS-Depression-Inventory 12-Items - ADI-12) of the caregivers was assessed and correlated with caregivers- and patient-related factors. Patient’s clinical status was assessed by ALS Functional Rating Scale – revised and the Behavioral Score of the Edinburgh Cognitive and Behavioral ALS Screen. Results: the caregivers reported a positive QoL associated with functional and behavioral status of the patient, disease duration and caregivers’s depression The most impaired domains of the QoL differed depending on the country of provenance, cultural background and/or social support of the caregivers. Depression was present in 1/3 of the caregivers and was significantly more frequent in the Polish group. It positively correlated with female gender, disease duration, sleep disturbances and functional decline. Both QoL and mood were significantly lower in the caregivers more burdened with the functional care of the patients. Conclusions: the wellbeing of caregivers of ALS patients is affected by patient-related and culture-specific conditions. Understanding the needs and background of psychological adaptation of the caregivers from various countries may translate into better QoL and local patient care.

Keywords:

• Amyotrophic lateral sclerosis
• caregivers
• quality of life
• depression
• wellbeing

Acknowledgements

The authors thank the patients and caregivers from Germany and Poland for participating in this study.

Declaration of interest

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This is an EU Joint Programme – Neurodegenerative Disease Research (JPND; 01ED1405) project. The project is supported through the following organizations under the aegis of JPND – www.jpnd.eu, e.g. Germany, Bundesministerium für Bildung und Forschung (BMBF, FKZ), Sweden, Vetenskapr å det Sverige, and Poland, National Center for Research and Development (NCBR). This work was additionally supported by the Center for Research and Development (NCBR; ERA-NER-E-Rare-3/IV/Maxomod/11/2020) and Deutsche Forschungsgemeinschaft (LU 336/13-2 BI 195/54-2) and the BMBF (#01GM1103A).