Caregiving Experiences during the COVID-19 Pandemic

ABSTRACT

Background: Caring for a family member with cognitive impairment can be emotionally and physically exhausting. Caregiver challenges have been exacerbated by the COVID-19 pandemic. This qualitative study examined caregiving experiences during the pandemic, exploring what caregivers perceived as most important in their caregiving experience while navigating through the pandemic. Method(s) We enrolled 158 adults (non-Hispanic White (NHW) 66%;Latino 16%;Black 9%;Asian 8%) caring for a family member with MCI, mild cognitive impairment, (35%) or dementia (65%). Approximately 37% were recruited from an Alzheimer's Disease Research Center (ADRC) and 63% from the community. Caregivers completed demographic questionnaires and open-ended questions about their experience during the pandemic. They were asked (1) what was the most important thing to them in terms of providing care;(2) if they felt that they had enough support to help them provide care;(3) how the COVID-19 pandemic has impacted them and the care they provide;and (4) what strategies have they used to help them provide care. Responses were open-coded by 2 teams of 2, who met several times with the principal investigator to discuss and refine the themes. Result(s) Several themes emerged from the analyses, including (1) caregivers managing their own physical health and safety, or that of their care recipient;(2) changes in relationship dynamics and familial support;(3) fluctuations in availability of formal support;(4) focus on wellness;and (5) employment/financial concerns brought upon by the pandemic. Conclusion(s) The pandemic has filled the lives of caregivers with more adversities and struggles, which can exacerbate the stress of caregiving and call attention to the need for more formal support. These findings highlight the urgent need for more online and at-home caregiving resources that can continue beyond the pandemic. Copyright © 2022 the Alzheimer's Association.