Caregiving for People With Dementia or Cognitive Impairment During the COVID-19 Pandemic: A Review

Abstract

The COVID-19 pandemic has been a major source of stress for informal caregivers for people with dementia. Studies show the unique challenges caregivers face, such as social isolation, extended work hours, and adherence to public health guidelines. We conducted a narrative review of factors impacting well-being of informal caregivers of older adults with dementia during the COVID-19 pandemic. Sixty-four papers were identified as published between June 2020 and December 2021. All studies were conducted in the U.S. or other Western countries and were cross-sectional and conducted prior to COVID-19 vaccines. Articles highlighted increasing burdens such as financial and physical stress, as well as worsened psychological well-being from anxiety and depression. Protective factors such as social support and telehealth interventions also emerged. Limitations include lack of longitudinal information to identify broader themes on caregiving during the pandemic. Studies not only identified new, pandemic-related risk factors, but also a heightened effect of pre-existing risk factors (e.g., income, living situation) on caregiver burden.

The impact of a pilot telehealth coaching intervention to improve caregiver stress and well-being and to increase dietary protein intake of caregivers and their family members with dementia – Interrupted by COVID-19

“…In addition to support-group participation, the education levels of most of the FCGs in both groups included a 4-year college degree and many had master’s degrees. Caregiver burden has been found to be lower in those with higher education and more support (Chyu et al, 2022; Mazzi et al, 2020).…”

“…Caregivers of those with dementia have indicated a need for information and support from healthcare professionals to manage their physical and emotional stress (Genentech, 2023). These needs are often unmet and grew considerably during the lockdown associated with the COVID-19 pandemic (Alzheimer’s Association, 2022; National Alliance for Caregiving and the Association of Retired Persons, 2020; Hwang et al, 2021; Chyu et al, 2022).…”

“…The impact of the COVID-19 pandemic created additional stresses and challenges for caregivers of individuals with dementia. Some of these included: an increased concern for self-health and care-recipient health, fear of transmitting the infection, job insecurity, financial worries, food insecurity, loss/closure of adult care centers, loss/closure of meal delivery services, added concern about securing food from stores without being infected, and limitations in available food options associated with manufacturing shortages and online ordering services (Chyu et al, 2022; Hwang et al, 2021). These added concerns extended caregiving activities (and thus work hours) and resulted in feelings of greater isolation, irritability, anxiety, and depression, along with sleep disturbance and appetite changes; all of which further negatively impacted the health of the FCGs (Chyu et al, 2022; Hwang et al, 2021; Mazzi et al, 2020).…”

2024 Alzheimer's disease facts and figures

“…Existing reports indicate that the COVID‐19 pandemic has posed significant social, psychological, emotional and physical challenges to family members and friends who provide care for people with dementia. 655 , 656 , 657 , 658 , 659 , 660 , 661 , 662 , 663 , 664 , 665 Fatigue and burnout among dementia caregivers and their lack of access to services and supports for themselves and for the people for whom they provide care are common themes in research on the wide‐ranging effects of the COVID‐19 pandemic. 666 For these reasons, the pandemic has created a crisis for dementia caregivers.…”

Maximizing the Benefit of Respite for Dementia Caregivers: A Study Protocol Describing the Development & Evaluation of the Time for Living & Caring (TLC) Intervention

“…While not originally planned, the TLC app ended up including a fourth information module that provided caregivers with lists of respite ideas and activities that could be done in the home, oftentimes with the care-recipient present. These ideas were necessary and reflected the unique historical moment in which the TLC app was launched (late spring/summer of 2020), a time when many of the traditional respite providers as well as the informal arrangements made with friends and family to provide shared caregiving became unavailable because of the COVID-19 pandemic [48][49][50][51][52][53].…”