Navigating COVID-19 and Long-Term Care: Dementia Caregivers' Challenges and Strengths

Abstract

Persons with dementia living in long-term care settings have been especially affected by the COVID-19 pandemic, and their family caregivers have had to cope with numerous additional stressors during this time. We conducted 20 semi-structured interviews and gathered open-ended survey data from N=104 caregivers participating in an ongoing intervention trial at the start of the COVID-19 pandemic. Open-ended questions explored the difficulties caregivers have experienced in caring for and supporting a relative in long-term residential care. Caregivers provided their perspectives about services and supports that have facilitated coping with uncertainty, anxiety, and loss during the pandemic, and identified resources and strengths they have found helpful in caring for their relatives. Thematic analysis was used to identify themes reflecting the key challenges and supports that have emerged for caregivers, and to highlight caregivers' recommendations for promoting their and their relatives' well-being during this crisis.

Mental health impact of the COVID‐19 pandemic on patients with neurodegenerative diseases and perceived family caregiver burden in Lima, Peru

“…People living with dementia are at high risk of depression, isolation, and behavioral changes, which may have been exacerbated by the COVID‐19 pandemic (Nakanishi et al., 2023). Prior studies have demonstrated that caregiver burden increased during the pandemic among informal caregivers of patients with PD (Hattori et al., 2023; Suzuki et al., 2021) and dementia in studies in India (Mukherjee et al., 2022), Thailand (Wongmek et al., 2023), Hong Kong (Fong et al., 2021), and across the United States (Mitchell et al., 2023; Yan et al., 2023). Caregiver burden increased in many regions of the world due to factors including aggravation of patient's symptoms, increased stress and anxiety, and needing to spend more hours at home given patients were less able to go out of the home during the pandemic (Carbone et al., 2021; Hattori et al., 2023).…”