Long-Term Care

Informal care, or care provided by family and friends, is the most common form of care received by community-dwelling older adults with functional limitations. However, less is known about informal care provision within residential care settings including residential care facilities (for example, assisted living) and nursing homes. Using data from the Health and Retirement Study (2016) and the National Health and Aging Trends Study (2015), we found that informal care was common among older adults with functional limitations, whether they lived in the community, a residential care facility, or a nursing home. The hours of informal care provided were also nontrivial across all settings. This evidence suggests that informal caregiving and some of the associated burdens do not end when a person transitions from the community to residential care or a nursing home setting. It also points to the large role that families play in the care and well-being of these residents, which is especially important considering the recent visitor bans during the COVID-19 epidemic. Family members are an invisible workforce in nursing homes and residential care facilities, providing considerable front-line work for their loved ones. Providers and policy makers could improve the lives of both the residents and their caregivers by acknowledging, incorporating, and supporting this workforce.

The needs of persons living with Alzheimer's disease and Alzheimer's disease-related dementia (AD/ADRD) are challenged by tremendous complexity impacting both care delivery and financing. Most persons living with dementia (PLWD) also suffer from other chronic medical or mental health conditions, which further burden quality of life and function. In addition to difficult treatment choices, optimal dementia care models likely involve people and services that are not typical pieces of the health care delivery system but are all critical partners-care partners, social workers, and community services, to name a few. More than 200 models of dementia care have demonstrated some efficacy. However, these successful interventions that might address much of the care needed by PLWD are uninsured in the United States, where insurance coverage has focused on acute care needs. This poses great difficulties for both care provision and care financing. In this article, we review these 3 key challenges: dementia care for those with chronic comorbid disease; care models that require people who are not typical providers in traditional care delivery systems; and the mandate to provide high-quality care that is currently not funded by usual health care insurance. We propose promising next steps that could substantially improve the lives of PLWD and the lives of their care partners, and highlight some of the many research questions that remain.

Research suggests that growth in Black and Hispanic (minority) older adults' nursing home (NH) use may be the result of disparities in access to community-based and alternative long-term services and supports (LTSS). We aimed to determine whether minority groups receiving care in NHs versus the community had fewer differences in their functional needs compared with the differences in nonminority older adults, suggesting a disparity.

Prior research and the popular press have anecdotally reported inadequate nursing home staffing levels during the COVID-19 pandemic. Maintaining adequate staffing levels is critical to ensuring high-quality nursing home care and an effective response to the pandemic. We therefore sought to examine nursing home staffing levels during the first nine months of 2020 (compared with the same period in 2019), using auditable daily payroll-based staffing data from the Centers for Medicare and Medicaid Services. We found that the total number of hours of direct care nursing declined in nursing homes during the COVID-19 pandemic, as did the average nursing home census. When we accounted for changes in census, the number of nurse staff hours per resident day remained steady or, if anything, increased slightly during the pandemic. The observed increases in staff hours per resident day were small but concentrated in nursing homes operating in counties with high COVID-19 prevalence, in nursing homes with low Medicaid census (which typically have more financial resources), and in not-for-profit nursing homes (which typically invest more in staffing). These findings raise concerns that although the number of staff hours in nursing homes did not decline, the perception of shortages has been driven by increased stresses and demands on staff time due to the pandemic, which are harder to quantify.

In this systematic review, we examine the literature from 2000 to 2020 to ascertain whether we can make strong conclusions about the relative benefit of adding informal care or formal care providers to the care mix among individuals receiving care in the home, specifically focusing on care recipient outcomes. We evaluate how informal care and formal care affect (or are associated with) health care use of care recipients, health care costs of care recipients, and health outcomes of care recipients. The literature to date suggests that informal care, either alone or in concert with formal care, delivers improvements in the health and well-being of older adults receiving care. The conclusions one can draw about the effects of formal care are less clear.

A descriptive paper covering how COVID19 has further destabilized nursing homes and offering suggestions for how to improve long term care post-pandemic.

Rates of informal home care use among older adults with disabilities increased from 2004 to 2016, such that in 2016 almost three-quarters of these adults received informal home care. Informal care remains the most common source of home care, even though formal home care use grew at almost twice the rate, with a 6-percentage-point increase to 36.9 percent in 2016.

Long-term care (LTC) facilities are particularly dangerous places for the spread of COVID-19 given that they house vulnerable high-risk populations. Transmission-based precautions to protect residents, employees, and families alike must account for potential risks posed by LTC workers’ second jobs and unpaid care work. This observational study describes the prevalence of their (1) second jobs, and (2) unpaid care work for dependent children and/or adult relatives (double- and triple-duty caregiving) overall and by occupational group (registered nurses [RNs], licensed practical nurses [LPNs], or certified nursing assistants [CNAs]). The data used was a descriptive secondary analysis of data collected as part of the final wave of the Work, Family, and Health Study. Findings show that LTC workers commonly hold second jobs along with double- and triple-duty caregiving roles. To slow the spread of COVID-19, both the paid and unpaid activities of these employees warrant consideration in the identification of appropriate clinical, policy, and informal supports.

Descriptive article covering the risk of COVID transmission in assisted living, independent living, and continuing care retirement communities.

Research on home‐based long‐term care has centered almost solely on the costs; there has been very little, if any, attention paid to the relative benefits. This study exploits the randomization built into the Cash and Counseling Demonstration and Evaluation program that directly impacted the likelihood of having family involved in home care delivery. They find that some family involvement in home‐based care significantly decreases health‐care utilization: lower likelihood of emergency room use, Medicaid‐financed inpatient days, any Medicaid hospital expenditures, and fewer months with Medicaid‐paid inpatient use. We find that individuals who have some family involved in home‐based care are less likely to have several adverse health outcomes within the first 9 months of the trial, including lower prevalence of infections, bedsores, or shortness of breath, suggesting that the lower utilization may be due to better health outcomes.