No Hugs Allowed: Isolation and Inequity in North Carolina Long-term Services and Supports During COVID-19

Patient Isolation Worsened by COVID-19

In North Carolina and across the country, COVID-19 compounded already existing isolation from family and friends for older adults and those with disabilities cared for across the long-term care services and supports (LTSS) spectrum (i.e., nursing homes, skilled nursing facilities, and home and community-based services) [1, 2]. The risk of infection worsened this isolation as facilities minimized personal contact to reduce exposure to COVID-19. In order to limit the spread of COVID-19, North Carolina’s Department of Health and Human Services (NCDHHS) mandated cancelation of communal activities, group meals, and in-person visitation [3]. Although necessary to preserve the physical health of patients, these policies do not prevent negative mental health effects among LTSS recipients. A more comprehensive approach would include mental health and social-support-focused policies alongside standard disease detection and prevention.

Isolation, already a serious health risk for older adults, has been linked with higher rates of clinical depression, anxiety, and even heart failure [4]. With more than 70,000 long-term care residents and staff dead from COVID-19 nationwide— accounting for 4 in 10 deaths—as of September, lockdowns and isolation have become essential to limiting the spread in these facilities [5]. Walks outside and other physical exercises are restricted for LTSS residents, causing physical deterioration of patients. With many residents unhappy with their lives in lockdown, families grapple with bringing their loved ones back home, potentially placing the burden of care on the families themselves.

Race and Long-term Care in North Carolina

COVID-19 disproportionally affects Black, Indigenous, and people of color (BIPOC) by exacerbating preexisting inequities in income, housing, education, and other social determinants of health [6]. It is imperative to look at how these inequities affect long-term care recipients in the state, where Black individuals, in particular, account for a large percentage of residents in long-term care.

Nursing homes account for over 40% of all COVID-19-related deaths in America; Black individuals in nursing homes and other LTSS facilities may experience a larger incidence of cases and death in North Carolina [7]. As of October 11, North Carolina had 7,358 cases and 1,492 deaths linked to nursing homes [8]. Although accurate demographic data on these cases are not available, it is relatively safe to assume the cases disproportionately include Black individuals. A recent New York Times article supports the assumption—its inquiry into 22 states, not including North Carolina, found that nursing homes with large African American and Latinx populations were twice as likely to be hit with coronavirus as majority-white nursing homes [9]. The former—like other institutions in America—tend to be lower-rated institutions in more urban settings with larger resident populations [9].

These factors all contribute to increased risk of exposure to COVID-19 in LTSS. BIPOC-majority facilities are often lower-rated on the federal star rating system and are experiencing higher rates of infection compared with higher-rated facilities [10]. This combination of lower quality of care with heightened risks for minority populations in the face of COVID-19 confers particular disadvantages for these populations. This disparity, built in part by decades of systemic racism, depicts another way Black and other minority Americans are dying from COVID-19 at higher rates compared to white Americans.

All Nursing Facilities are not Created Equal

Whether a facility receives Medicare or Medicaid dollars has implications for facility quality, staff-patient ratios, staff compensation, and other attributes. Nationally, approximately 60% of all nursing home care expenditures are paid by Medicaid (43%) and Medicare (16%) [11]. Because about half of community-dwelling Americans needing LTSS are younger than 65, increased Medicaid spending makes fiscal sense as Medicare is only widely available to individuals aged 65 and older and does not cover LTSS except in limited instances [12].

North Carolinians under age 65 with physical disabilities receive around 39% of North Carolina’s Medicaid dollars while the other 61% goes toward nursing home care—covering individuals accounting for four-fifths of all national LTSS spending while representing a small minority of the population [12, 13]. Variability in LTSS funding and quality has left facilities exposed to the pandemic and impacts their ability to respond uniformly and adequately regarding testing, contact tracing, and supplies (i.e., personal protective equipment [PPE]) [14].

What About the Caregivers?

In a typical year, formal LTSS caregivers—individuals employed to provide care—often lack adequate wages, work multiple jobs, and care for family members [15]. The current pandemic exacerbates these issues while adding more risk of infection, loss of wages and employment, and increased stress. Again, the burden is disproportionately felt by BIPOC who are often employed in these direct care worker positions [16].

COVID-19 has negatively affected informal caregivers as well. Informal caregivers may be caring for older or sick family members while balancing children and a job. The typical caregiver in the United States is a 49-year-old woman caring for a woman aged about 69 years [17]. In North Carolina, caregivers are aged 60 (average), caring for a parent aged about 74 [18]. Caregivers give their money and time in order to provide for family members, with 70% and 71% of caregivers changing their work schedules and using their own money to provide care, respectively [18]. Informal caregivers suffer adverse mental health effects, with 63% citing experience with emotional stress and 58% finding it hard to get enough rest at night [18]. These effects are pre-pandemic and have been heightened by COVID-19 [19].

Women caregivers, especially BIPOC women, are the most negatively affected by the pandemic. Women represent 54.1% and 50.3% of home health aides and nursing assistants, respectively [20]. Nationally, 30.3% of women of color in the health care and social assistance sectors have filed unemployment claims since the pandemic began [20]. Large unemployment for women of color is devastating; 67.5% of Black mothers and 41.4% of Latinx women are the sole breadwinners for their families [20]. With risk of job loss, risk of infection, and loved ones at home to care for, women caregivers are struggling to keep their families afloat.

Female caregivers experience further difficulty as they are often socially or culturally expected to provide care for their loved ones. On one hand, these women are discouraged from taking time off work for fear of negative perceptions about their commitment to their job [20]. At the same time, the work and pay received (minority women more often work in COVID-19-prone essential work fields) is essential for caregiving costs, such as medical expenses and child care.

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