COVID-19 related life changes for family caregivers of persons with Lewy body disease

ABSTRACT

Background: Coronavirus disease 2019 (COVID-19) affected individuals' physical and mental health. Protective measures such as closures, social-distancing, masking, and isolation resulted in increased feelings of loneliness and isolation. This study aimed to investigate life changes associated with COVID-19 for family caregivers of persons with Lewy body disease (LBD). Method(s) Data were analyzed from an existing LBD caregiver needs and concerns study that took place between January 2021 and February 2021. A mixed methods approach was used to describe how 20 caregivers' lives changed as a result of the COVID-19 pandemic. Items from the Bakas Caregiving Outcomes Scale (BCOS) were adapted for COVID-19 and rated on a response scale ranging from 1 = changed for the worst to 7 = changed for the best, with 4 = did not change. Qualitative data were collected as participants expanded upon their responses to the scale items. Result(s) Caregivers experienced both positive and negative life changes as a result of COVID-19. On average, positive changes included increased use of the internet to order items (Mean = 4.35), videoconferencing to connect with others (Mean = 4.55), and improved financial well-being (Mean = 4.35). Negative changes included reduced social (Mean = 1.7) and family (Mean = 2.05) activities and decreased ability to cope with stress (Mean = 2.60). Most responses ranged from 1 to 4, with some items having wider ranges from 1 to 7 showing that individual caregivers were impacted differently by the COVID-19 pandemic. Qualitative comments were consistent with quantitative responses. Some caregivers expressed concerns that limited family and social contact contributed to a more rapid decline in the person with LBD. Caregiver health and well-being were negatively affected as well, with caregivers noting decreased level of energy and worsened physical health. Conclusion(s) Family caregivers of persons with LBD experienced both positive and negative life changes as a result of COVID-19. Responses indicated that caregivers were affected in a variety of ways and an individualized approach is recommended in dealing with caregiver life changes resulting from the COVID-19 pandemic. Copyright © 2022 the Alzheimer's Association.