‘24/7’ Caregiving: A Qualitative Analysis of an Emerging Phenomenon of Interest in Caregiving

Abstract

The COVID-19 pandemic has exacerbated the difficulties faced by caregivers who have to provide continuous ‘24/7’ care to persons with dementia with minimal formal and informal support. While caregivers have reported heightened levels of caregiving distress and burden during the pandemic, there remains a dearth of research pertaining to their lived experiences of providing continuous care with little respite and the corresponding physical, psychosocial and emotional impacts of caregiving ‘24/7’. The present study uses data obtained from interviews with dementia caregivers (N = seven) that were collected as part of a larger study on Carer Matters, a hospital-based holistic caregiver support program held during COVID-19, to conduct a secondary thematic analysis. The findings revealed three themes that defined the shared experiences of ‘24/7’ caregivers: (1) A World Overturned, which refers to the increase in caregiving intensity and burden due to the pandemic; (2) Burning on Both Ends, which refers to the impossible balance between caregiving and their personal lives; and (3) At Wits’ End, which refers to an overwhelming sense of hopelessness and helplessness over their caregiving situation. These findings highlight the challenges and unsustainability of ‘24/7’ caregiving and the detrimental impact that round-the-clock care wields on caregivers’ physical and mental well-being. Implications and recommendations are discussed in accordance with the cultural particularities of the study’s Asian context (Singapore), with calls for greater caregiver support to be better integrated into society and the community, especially at the neighborhood and grassroots level, to alleviate caregiving burden and safeguard their well-being.

Navigating the Caregiving Pathway: Understanding the Contextual Influences on Sense of Coherence Among Family Caregivers

“…Caregivers' incapability of supporting the care recipient may be associated with feelings of failure, anxiety, guilt, and unmet needs. These feelings can be a significant part of the caregiving experience and can be detrimental to both the caregiver and the care recipient - a "burning at both ends" situation marked with feelings of helplessness and hopelessness [ 5 ].…”