How COVID-19 Has Affected Caregivers’ Burden of Patients with Dementia: An Exploratory Study Focusing on Coping Strategies and Quality of Life during the Lockdown

Abstract

COVID-19 has caused a public and international health emergency, leading to isolation and social distancing. These restrictions have had a significant impact on the caregivers of people with dementia, increasing the burden of patient management. The purpose of this study was to investigate the stress perceived by caregivers of patients with Alzheimer’s disease (AD) during the pandemic. We used a cross-sectional survey design to evaluate the caregivers’ psychological responses and coping strategies. Eighty-four caregivers of patients with a diagnosis of AD were involved in this study by completing an online questionnaire. They presented a high perception of stress (the Perceived Stress Scale mean ± DS: 33.5 ± 4.5), and their high burden in caring was mainly related to physical difficulties (Caregiver Burden Inventory–Physical Burden mean ± DS: 15.0 ± 2.1) and perception of loss of time (Caregiver Burden Inventory–Time-dependence Burden mean ± DS: 16.5 ± 1,4). Moreover, caregivers perceived their quality of life as very low (Short Form-12 Health Survey Physical mean ± DS: 13.5 ± 2.7; Short Form-12 Health Survey Mental Health mean ± DS: 16.4 ± 4.2). Finally, we found that participants mostly used dysfunctional coping strategies, such as avoidance strategies (Coping Orientation to Problem Experiences–Avoidance Strategies mean ± DS: 39.5 ± 7.1), but these strategies did not affect the stress level of caregivers. Given that caregivers present a high burden and stress, innovative tools could be a valuable solution to investigate and support their emotional and behavioral status during difficult periods, such as the COVID-19 pandemic.

Association between the COVID‐19 pandemic, caregiving burden, and quality of life of caregivers of people with dementia: A cross‐sectional study

“…The results indicated that HRQoL was lower in PwD CGs with higher levels of stress and anxiety related to COVID-19, which is consistent with the findings of previous studies. Previous studies have reported that QoL decreases as the COVID-19 pandemic is prolonged (Maggio et al, 2021;Tuijt et al, 2021). A qualitative study regarding the experiences of CGs under lockdown and social restrictions during the pandemic reported that CGs suffered negative impacts of restrictions, changes in living arrangements, increased cognitive and psychological difficulties, and lack of social engagement (Tuijt et al, 2021).…”

“…Additionally, a study involving PwD and their CGs found that PwD's physical health deterioration, along with CGs' changed lifestyle and reduction of healthcare services during the COVID-19 pandemic, was a factor for decreasing HRQoL in CGs (Maggio et al, 2021), supporting the results of a previous study indicating that more caregiving burden was associated with longer disease duration and more behavioral and psychological problems (Tan et al, 2019). Therefore, public health policy decision-makers need to ensure the continuity of delivery of public health interventions for family careers of PwD to reduce caregiving stress.…”

“…This deteriorated the QoL of CGs and impaired their ability to care for PwD (Borelli et al, 2021). In other words, during the COVID-19 pandemic, changes in daily life and the resulting anxiety and interruptions in healthcare resources for CGs of PwD induced caregiving burden and stress in CGs (Boutoleau-Bretonnière et al, 2020), which are highly likely to act as factors for lowering their HRQoL (Maggio et al, 2021).…”

“…Furthermore, governments' stay-at-home orders, abrupt suspension of medical support, and restriction of access to healthcare facilities elevated the CGs' burden (Alzheimer's Association, 2020), thereby aggravating feelings of stress, triggering distress, anxiety, and depression (Fong et al, 2021;Vaitheswaran et al, 2020), and deteriorating the health-related quality of life (HRQoL) of CGs (Maggio et al, 2021). Some studies have investigated the effects of COVID-19-specific stress and anxiety on CGs' burden and HRQoL (Maggio et al, 2021).…”

Impact of the COVID-19 Pandemic on Global Diseases and Human Well-Being

“…A study has been published in our editorial that evaluates the psychological responses of caregivers of individuals with dementia during the COVID-19 pandemic lockdown; a cross-sectional survey using an anonymous online questionnaire was used [ 15 ].…”