The US and its healthcare systems are experiencing an unprecedented crisis through the COVID-19 pandemic that is having a major impact on PWD, their family caregivers, and the front- line professional staff who support them. In many communities, death rates from COVID- 19 disproportionately involve older adults and PWD, especially those living in assisted living facilities and nursing homes. Health workers in these facilities, and caring for older adults at home, are also at risk of infection, morbidity and even mortality.Infection control guidelines and mandates have shut down institutional access to visitors and instituted quarantining procedures that further isolate PWD. Lack of structured activities, sheltering in place, caregiver stressors around employment, finances, and risk mitigation all have the potential to exacerbate behavioral issues in PWD. The nature of the pandemic also creates the need for urgent, real-time decision- making, in the face of an evolving infectious disease that is highly communicable, leads to unpredictable and precipitous declines and for which there is no cure or vaccine.
Specific Aims : The goal of this study is to engage family and professional (CNAs,LPNs, RNs) caregivers of PWD across the care continuum (nursing homes, assisted living facilities, and in the community) to study the impact of COVID-19 on the health and well-being of PWD and their caregivers, the caregiving experience and the impact of COVID-19 on patient behaviors and work/family relationships. Through a mixed-methods study involving 600 formal and informal caregivers of PWD residing in the community, in assisted living facilities (ALF) and nursing homes, we will accomplish this goal through the following aims:
Aim 1 : Describe the caregiver lived experience during the COVID-19 pandemic Aim 2: Examine how COVID-19 related factors (including quarantining, isolation, etc.) have affected caregiver stress.
Aim 3 : Explore the role of COVD-19 related factors (i.e., PPE, caregiver stress) on behavior changes and severity in PWD.
Aim 4 : Assess the impact of COVID-19 on caregiver planning and health care decision-making
Patients with Alzheimer's disease (AD) often have severe agitation, and we are currently in the field with a randomized controlled trial of dronabinol (THC) to treat agitation in AD. The COVID19 crisis has exacerbated the burden and stress of caring for patients with AD and agitation, particularly due to the need to be locked-down together during the crisis. We propose to interview ~600 caregivers of AD patients in outpatient and long-term care to better understand changes in caregiver stress and burden associated with agitation and with COVID19 care, both for family and paid caregivers.