Informal caregiving in amyotrophic lateral sclerosis (ALS): a high caregiver burden and drastic consequences on caregivers’ lives
Creators: name: Schischlevskij, Pavel
name: Cordts, Isabell
name: Günther, René
name: Stolte, Benjamin
name: Zeller, Daniel
name: Schröter, Carsten
name: Weyen, Ute
name: Regensburger, Martin
name: Wolf, Joachim
name: Schneider, Ilka
name: Hermann, Andreas
name: Metelmann, Moritz
name: Kohl, Zacharias
name: Linker, Ralf A.
name: Koch, Jan Christoph
name: Stendel, Claudia
name: Müschen, Lars H.
name: Osmanovic, Alma
name: Binz, Camilla
name: Klopstock, Thomas
name: Dorst, Johannes
name: Ludolph, Albert C.
name: Boentert, Matthias
name: Hagenacker, Tim
name: Deschauer, Marcus
name: Lingor, Paul
name: Petri, Susanne
name: Schreiber-Katz, Olivia
Publisher: name: Universität Ulm
Year: 2021
Subjects: subject: amyotrophic lateral sclerosis (ALS)
subject: informal caregiving
subject: caregiver burden
subject: functional status
subject: decreasing autonomy
subject: health-related quality of life
subject: socioeconomic status
subject: psychological support
subject: DDC 610 / Medicine &amp; health
subject: Amyotrophic lateral sclerosis
subject: Caregivers; Psychology
subject: Depression
subject: Anxiety
subject: Comorbidity
subject: Quality of life
subject: Myatrophische Lateralsklerose
subject: Pflegeperson
subject: Angehöriger
subject: Lebensqualität
subject: Depression
subject: Sekundärkrankheit

description: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p &lt; 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p &lt; 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p &lt; 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p &lt; 0.001, n = 234), anxiety (rp = 0.550, p &lt; 0.001, n = 234), and poorer physical condition (rp = −0.362, p &lt; 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p &lt; 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.