Coping and Managing ALS Disease in the Family during COVID-19: Caregivers' Perspective

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects motor neurons, the nerve cells in the brain and the spinal cord that enable voluntary muscle movement. Managing ALS is complex and increasingly requires informal care, most often by the patient's companions/spouses or children. The COVID-19 pandemic posed additional critical issues, particularly the disruption of home care and the increased time caregivers spent on patient care. One aim of this research was to assess caregivers’ health conditions and to understand how the lockdown has affected their lives and the management of their relatives’ illnesses. Another was to observe whether a psychological support intervention for caregivers’ minor children could indirectly impact caregivers. The study involved Italian participants: 26 caregivers (31% males and 69% females) aged between 20 and 69 years (M = 43.85 years, SD = 10.17). The following variables were measured at t0 and t1: reflective functioning with the Reflective Functioning Questionnaire (RFQ), depression with the Beck Depression Inventory-I (BDI-I), hopelessness with the Beck Hopelessness Scale (BHS) and burden of care with Family Strain Questionnaire (FSQ). At t1 only 18 participants also participated in a semi-structured interview to explore the impact of the COVID-19 pandemic, specifically on caregivers of the psychological support participants' children received. The results at t0 showed that caregivers exhibit significant distress symptoms, high stress levels and burden of care. At t1 it was found that the pandemic hurt caregivers' emotions; however, they do not show a worsening but a decrease in hopelessness. The interviews showed that the intervention on their children had a positive effect by allowing containment of the negative effects on well-being. This suggests that it is essential that ALS management also includes a whole-family intervention.

How the coronavirus pandemic affected the lives of people with ALS and their spouses in the UK from spouses’ perspectives: a qualitative study

“…National lockdowns ( 12 ) have resulted in ALS caregivers reporting feelings of isolation, loneliness, and helplessness, among other negative emotions; the greatest difficulty for caregivers of pwALS is the loss of support from healthcare professionals, increasing feelings of helplessness ( 12 ).…”

Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups

“…Social isolation and loneliness emerged as prominent adverse outcomes of the pandemic for ALS patients and their caregivers, becoming primary concerns during lockdown. Additionally, there was a fear of being forgotten and abandoned by healthcare professionals [25,26]. Additionally, a more rapid decline in functional status was observed during periods of restrictive measures [27].…”