Adult Day Services, Health Equity for Older Adults With Complex Needs, and the COVID-19 Pandemic

Abstract

Morbidity and mortality from COVID-19 have unduly affected older adults from racial and ethnic minority groups. In this article, we highlight the experiences and vulnerabilities of diverse older adults with complex health and social needs when their access to vital, but overlooked, community-based adult day service centers (ADSCs) was abruptly cut off during a pandemic.

Pandemic-related ADSC closures left vulnerable older adults and their care partners without essential daily support and services, such as health monitoring and socialization. However, the magnitude of the impact of ADSC closures on well-being, particularly among members of racial/ethnic minority groups, has yet to be measured with any form of “big data” because large-scale, nationally representative data sets consisting of participant-level information and outcomes associated with ADSC participation do not yet exist. Unmet needs of older adults resulting from pandemic-related ADSC closures are underrecognized because of a lack of systematic data collection, undermining efforts to achieve health equity.

We call on ADSCs to link rigorous collection of racial and ethnic data to quality measures of access to equitable “age-friendly” care as a means of better supporting diverse community-dwelling older adults beyond the COVID-19 pandemic. (Am J Public Health. 2022;112(10):1421–1428. https://doi.org/10.2105/AJPH.2022.306968)

COVID-19, caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), had killed more than 865 000 people in the United States as of January 2022.¹ More than 630 000 COVID-19-linked deaths (nearly 75% of such deaths) have occurred among people older than 65 years.² This suggests that COVID-19 has taken the lives of nearly 1 in 100 older US adults in just over 2 years. Although cases of COVID-19 in the United States have fluctuated over time and between states since the beginning of the pandemic, adults aged 65 years and older continue to be affected disproportionately in terms of hospitalizations and deaths.³

Well-intentioned social distancing policies, such as avoiding crowded places and limiting contact with people outside of one’s household, were implemented at the beginning of the COVID-19 pandemic to protect people at high risk of severe illness from the virus, such as older adults. However, these measures also had unintended consequences for older adults’ health and well-being that have not been captured in public health data in the same way as morbidity and mortality.⁴ The purpose of this article is to describe the disproportionate, but understudied, effects of the COVID-19 pandemic on older adults receiving care through adult day service centers (ADSCs) in March 2020.

ADSCs are professional care settings designed for individuals who require supervised care during the day or those who are isolated and lonely.⁵ These centers enable older adults to socialize and enjoy planned activities in a peer group setting while still receiving needed health and social services. They simultaneously offer family caregivers respite from caregiving. Nearly 60% of ADSC users identify as members of racial/ethnic minority groups, and the majority of users live below federal poverty guidelines.⁶

In this analysis, we highlight the experiences and vulnerabilities of diverse older adults with complex health and social needs when their access to vital, but overlooked, adult day services was abruptly cut off during a pandemic.⁷ We also explore the ways in which potential unmet needs of older adults resulting from the pandemic are underrecognized because of a lack of systematic data collection in community-based settings serving older adults, undermining efforts to achieve health equity. Finally, we call for a standardized approach to data collection in ADSCs that links data on race and ethnicity as well as social determinants of health to establish quality measures for age-friendly communities. As an essential first step, this would enable ADSCs to identify disparate outcomes exacerbated by the COVID-19 pandemic and to take eventual concrete and measurable actions to address the unmet health and social needs of diverse older adults.

STRUCTURAL FACTORS AND COVID-19 OUTCOMES

Morbidity and mortality from COVID-19 have unduly affected older adults from racial and ethnic minority groups, who have experienced higher COVID-19 case numbers and hospitalizations than their White counterparts.² Age, chronic conditions, and behavioral and social factors (e.g., crowded living conditions)⁸ contribute to the severity of COVID-19 symptoms as well as the likelihood of mortality. However, the pandemic has clearly exposed the role of structural racism in shaping COVID-19 disparities in outcomes among racial/ethnic minority populations.⁹ In a cross-sectional study involving multiple data sets, including the American Community Survey, the PULSE COVID survey,¹⁰ and the National Health Interview Survey,¹⁰ death rates among Black (472 deaths per 100 000 individuals) and Latinx (545 deaths per 100 000) individuals aged 65 to 74 years were about 3 times higher than rates among non-Latinx White people (164 deaths per 100 000) in the same age bracket.

The “weathering” hypothesis suggests that increased exposure to social inequality throughout the life course results in physiological stress.¹¹ Racism contributes to increased stress, lower income, and barriers to health care access, which all contribute to chronic illnesses that increase the likelihood of poor outcomes from COVID-19.¹² For these reasons, COVID-19 has caused additional harm to racial/ethnic minority older adults who are already vulnerable to poor health outcomes.

However, it is important to note that the ramifications of COVID-19 for older adults from diverse communities should not only be viewed in terms of excess deaths. Racism, discrimination, language barriers, and weak social networks already predispose people from diverse racial/ethnic backgrounds to a higher vulnerability for social isolation.¹³ However, public health measures to mitigate infection spread may have unintentionally exacerbated loneliness and related health complications among older people. In general, social distancing has inadvertently led to social disconnection for many older adults, particularly those who live alone, functionally depend on family members, rely on support from community services, or live in residential long-term care facilities.¹⁴ Care partners, many of whom are the sole source of care for older individuals in the community, have also experienced undue stress while trying to protect their family members from COVID-19 and simultaneously facing a lack of options for support and respite.¹⁵

Many care partners have reported seeing declines in mental health and physical and cognitive functioning in their loved ones.⁷ These reports are unsurprising. Older adults with medical, cognitive, or social frailty have difficulty compensating when their homeostasis¹⁶ is threatened. In other words, aging is associated with a diminished capacity to respond to varying physiological challenges. When faced with the added challenge of social isolation, older adults are particularly susceptible to rapid declines. Although older adults experienced high rates of loneliness and social isolation before the pandemic, many had social outlets that supported productive engagement and buffered depression and loneliness.¹⁶ These social outlets included congregate settings such as churches, senior centers, and ADSCs, many of which were deemed unessential and closed in-person services for extended periods, even after lockdowns were lifted.¹⁷

THE ROLE OF ADULT DAY SERVICES

In the early days of the COVID-19 pandemic, institutional long-term care facilities, which primarily serve older adults, were identified as high-risk settings for severe outcomes from outbreaks of COVID-19 because of the advanced age and multiple underlying conditions of the residents.¹⁸ Far less public health attention was paid to older adults in community-based long-term care settings, a majority of whom qualify for placement into skilled nursing facilities.⁷ Among these community settings were ADSCs, which serve more than 286 000 adults each day in the United States.¹⁹ ADSC staff provide people who have chronic illnesses or functionally disabling conditions with culturally congruent care, health monitoring, socialization opportunities, and assistance with activities of daily living for up to 8 hours per day.²⁰ In addition, clinically trained staff provide vital sign monitoring, counseling, nutrition services, and medication administration.⁵ ADSC staff also deliver evidence-based care, including memory care programs, which supports aging in place.²¹

Although most ADSCs are independently owned and operated, in some cases they are embedded within the Program of All-Inclusive Care for the Elderly (PACE), which provides comprehensive integrated medical and social services to certain frail, elderly people (participants) still living in the community.²² Most of the program participants are dually eligible for Medicare and Medicaid, and health-related services are often delivered at the ADSC.

ADSC users are a medically complex population who also have unmet social needs: (1) 69.2% of users live with some combination of Alzheimer’s disease and Alzheimer’s disease–related dementias, diabetes, depression, or heart disease¹⁹; (2) 65.8% are Medicaid beneficiaries; and (3) 58% are members of racial/ethnic minority groups.⁶ Among ADSC users, chronic disease management is frequently complicated by poverty, disability, limited English proficiency, transportation barriers, and food insecurity.²³

The results of an integrative review²⁰ of the literature showed that ADSCs are a favorable and effective form of long-term care for members of racial/ethnic minority groups, namely immigrants. ADSCs successfully incorporate elements of immigrants’ ethnic backgrounds and language into activities and programs that facilitate social connectedness, improve physical health and function, and preserve independence. Older adults in these centers experience a deep sense of camaraderie that supports well-being when spending time with peers who share a common language or generational experience. The people, food, imagery, and social activities in ADSCs all offer reminders of “home” (i.e., their native country) to older immigrants, providing them with a familiar environment. Beyond their particular cultures, programs in ADSCs expose older immigrants to new experiences (e.g., current events or field trips to museums), providing an avenue for acculturation and making American culture and history more accessible to them.

The aforementioned integrative review²⁰ also revealed that bilingual and bicultural staff, especially nurses, played the role of cultural liaison between older immigrants and the health care system. More than 6000 registered nurses and licensed practical nurses work in ADSCs nationally.⁶ Nurses in particular promote health literacy by helping older adults process and understand health information so that they can make better health care decisions (e.g., adhering to their medication regimen).²⁴ They also transform directives from health care providers (e.g., dietary modifications) into culturally sensitive, actionable health care interventions (e.g., culturally tailored lunches at the ADSC).²⁴

EFFECT OF PANDEMIC CLOSURES ON “NONESSENTIAL” CENTERS

In March 2020, ADSC sites across the nation were forced to close congregate operations with little notice or direction, putting an abrupt end to in-person services.^7,17 Although child care facilities were deemed essential during the pandemic,²⁵ ADSCs were not treated the same way. According to the National Center for Health Statistics, 72% of ADSCs reported limiting hours or closing temporarily between January 2020 and March 2021. Moreover, 28.9% of ADSCs reported shortages of personal protective equipment such as gloves or face masks in that same period. Lack of this equipment may have limited their ability to safely provide in-person services.²⁶ Closures left ADSC clients without essential daily support and services, such as meal preparation, health monitoring, and socialization. Care partners also had no source of respite.⁷

However, many ADSC sites demonstrated resilience and creativity, continuing to provide telephonic or remote services to clients, including virtual programming.⁷ They did so while receiving no promise of reimbursement from government programs such as Medicaid, which is the primary payer of ADSCs. The lack of revenue to pay employees and cover overhead costs led some sites to close permanently.¹⁷

In a study of 22 ADSCs,²⁷ 86.4% reported that they stopped providing in-center services as a result of COVID-19, with 52.6% nearly suspending services because of a state mandate. Nearly 64% needed to furlough or terminate staff, whereas other sites transferred employees to other facilities or reduced working hours. All 22 sites offered telephone support to clients, including regular wellness check-ins (42.9%) and care coordination (28.6%); however, only 54.5% received any kind of reimbursement for these services. Most sites reported providing clients with activity ideas (77.3%), 14 sites (63.6%) provided virtual activities using technology such as YouTube or Zoom, and 12 sites (54.5%) provided customized bags of activities to clients. Although the majority of the sites provided these services, they were rarely reimbursed for this support. Almost 2 years later, ADSCs that were able to reopen had to reduce capacity while simultaneously incurring higher costs, workforce shortages, confusing and changing infection-control rules, and fears of new outbreaks.²⁷

Although ADSCs have clearly struggled to find ways to operate amid new variants and growing case counts,²⁸ a limited body of research has demonstrated the profound effects of ADSC closures on older adults and their care partners. Studies that have assessed the effects of ADSC closures on older adults and their care partners have consistently shown that pandemic-related closures of ADSCs have

• 1. Exacerbated isolation and caregiver strain,

• 2. Accelerated cognitive and functional declines,

• 3. Led to unsafe behaviors,

• 4. Increased the use of care in higher-cost settings (e.g., emergency rooms and skilled nursing facilities), and

• 5. Limited opportunities for productive engagement among the older adults they serve.^7,29

The experiences of ADSC staff in a qualitative descriptive study conducted by Sadarangani et al.⁷ highlight the effects of closures. For example, one staff member described increased health care use:

What I’m seeing is, I’m just looking at her hospitalizations, so we have had during this period of time 33 hospitalizations …in the three months, and our average before that was maybe one to two a month.…Not only did we have 33 hospitalizations, we’ve had 43 [emergency room] visits as well.

Another staff member described the physical and emotional effects of ADSC closures in the words of a caregiver:

“Since you closed,” and this was about a week and a half afterward, “I haven’t been able to get him outta bed. He comes outta bed to eat. He goes back to bed. He hasn’t been able to—he doesn’t wanna do anything.” She said, “I would say to him [prior to that], ‘They’re here to pick you up for the program.’ He was up. He was showered. He was dressed. He was ready.” She said, “He can’t.”

The consensus within this limited body of research on pandemic-related closures of ADSCs is that well-intentioned efforts to reduce the spread of COVID-19 among older adults by shuttering congregate settings inadvertently increased other health risks in this population by creating a gap in essential services. We lack data on exactly how many adult day programs have permanently closed since March 2020, although a Kaiser Family Foundation³⁰ survey of home- and community-based service providers showed that ADSCs were the most frequently reported types of such providers to have permanently closed during the pandemic. These closures also threaten the long-term viability of an increasingly important sector of care that predominantly serves vulnerable community-dwelling older racial/ethnic minorities.

LACK OF LARGE-SCALE STANDARDIZED DATA AFTER THE PANDEMIC

The scale and magnitude of the effects of ADSC closures on the well-being of users and their care partners, particularly those who identify as racial/ethnic minorities, have yet to be measured with any form of “big data” because large-scale, nationally representative data sets consisting of participant-level data and outcomes associated with ADSC participation do not yet exist.³¹ Notably, the National Postacute and Long-term Care Study, conducted by the Centers for Disease Control and Prevention, provides information on 7 major sectors of paid, regulated postacute and long-term care, including adult day services, but does not yet publicly share participant-level data.³²

Other studies examining the effects of ADSC use involve inconsistent outcome measures, do not incorporate physiological measures, include small sample sizes rather than large data sets, and rarely incorporate stakeholders into the study design process.^33,34 Moreover, race and ethnicity data are not routinely collected by ADSCs. This is evidenced by results from a recent retrospective cohort analysis³⁴ of 3053 ADSC clients in California with dementia. The analysis showed that data on race and ethnicity were collected from only 53.4% of participants because these data fields are not required by the state at the program level.

Even before the COVID-19 pandemic, a lack of standardized, large-scale data³⁵ led to ADSCs remaining a largely overlooked community-based resource for supporting individuals with complex health and social needs. The lack of data on social determinants of health and health outcomes among ADSC users represents a major obstacle to improving the health and well-being of older adults in the wake of the COVID-19 pandemic and understanding the effects of isolation on this vulnerable population.

Data collection in adult day services is fundamental to public health. Without it, the public health importance of these programs remains hidden, even though most older adults with chronic health conditions prefer to be cared for in their communities.³⁶ From a health equity perspective, the lack of data is problematic because data are a cornerstone of efforts to address disparities. Data are essential for identifying where disparities exist, directing efforts and resources to address disparities as they are identified, measuring progress toward achieving greater equity, and establishing accountability for achieving progress. ADSC data on race and ethnicity can also inform culturally relevant programming. Without adequate data, inequities remain unseen and unaddressed.

Efforts to conduct research in ADSCs have historically been disjointed; ADSCs lack rigorous, replicable, patient-level data that demonstrate their effects on the health and well-being of older adults and caregivers and their value for these individuals.³³ Investments in technology, such as electronic health record systems, telehealth portals, and data reporting and management systems,³⁷ have lagged far behind other health care providers. Now, ADSCs are further challenged to demonstrate the adverse effects of long-term closures or limited access to congregate care brought on by the pandemic.

A national survey of ADSC sites conducted just before the start of the pandemic examined which data, if any, ADSCs across the country were collecting. According to the survey results, 32% of ADSCs reported collecting data using standardized outcome measures.³¹ These ADSCs primarily collected data on activities of daily living (88.1%), cognition (57.5%), depression (48.7%), and loneliness (34.2%). These findings are promising because they demonstrate the capacity and capability of ADSCs to collect outcome data on clients and caregivers.

However, these measures, although important, do not fully reflect the services and benefits that ADSCs are known to provide (e.g., physical activity, cognitive stimulation, and socialization). Data collection in other important domains, such as caregiver well-being and health care use, was either inadequate or nonexistent. For example, only 27.8% of ADSCs used an evidence-based tool to assess caregiver well-being, and few centers recorded numbers of falls, emergency department visits, or hospitalizations.³¹ The latter measures have all been strongly suggested by researchers³³ and may be critically important in demonstrating the potential of ADSCs to reduce health care use and costs and leverage funding.

The survey also suggested that although some ADSCs are mandated by their respective state bodies to collect such data, many ADSCs appear to be collecting the data of their own volition.³¹ ADSCs clearly have a desire to collect outcome data and use the power of data to influence programming, policy-making, and funding. However, many programs could now find themselves in limbo, made worse by the pandemic, and unable to collect outcome data because of limited resources or to leverage additional resources because of a lack of evidence of their effectiveness.

The fact that ADSCs generally do not have the capacity and resources to undertake research independently underscores the need for academic researchers to engage with centers using a community-based participatory action framework to identify ADSC strengths and opportunities.³⁵

FUTURE DIRECTIONS TO PROMOTE HEALTH EQUITY

As uncertainties about the viability of ADSC programs for frail older adults persist amid the ongoing pandemic, it is clear that ADSCs in particular would benefit from a roadmap clearly showing ways to demonstrate for payers and policymakers the effects closures have had on the well-being of the individuals they serve and their care partners. With such information, ADSCs could demonstrate that they provide an essential service. This is particularly important with respect to members of racial/ethnic minority groups, who disproportionately receive care in ADSCs and have been profoundly affected by the COVID-19 pandemic. It is important to note that ADSCs are not the only segment of health care whose collection of data on race, ethnicity, and language is inadequate. In fact, historically data on race, ethnicity, and language were collected not for quality improvement purposes but to allow analyses ensuring compliance with civil rights provisions.³⁸

The COVID-19 pandemic has increased pressure for improvements in data collection across health care. However, it also represents an opportunity for community-based services, such as ADSCs, to highlight their abilities to address unmet health and social needs. This can be done not only by regulating and funding data collection but also by focusing on collecting information that is of importance to ADSC users and their families to inform care planning and quality of life.

Two initiatives may offer ADSCs guidance for approaches to data collection that emphasize equitable age-friendly health care with a focus on social determinants of health. The Centers for Disease Control and Prevention’s Data Modernization Initiative³⁹ focuses on working toward equitable public health through identifying and promoting best practices for data collection that account for social factors. Improved, standardized data collection on social determinants of health (e.g., discrimination and living arrangements) is needed to understand creative methods to leverage community-based programs such as ADSCs to meet people’s urgent and basic needs and improve health in the face of future pandemics or natural disasters, as opposed to simply shutting off access.

The “4Ms” framework⁴⁰ set forth by the Age-Friendly Health Systems initiative of the Institute for Healthcare Improvement established 4 evidence-based contributors to high-quality, cost-effective care for older adults. The 4Ms refer to “what matters” (knowing, and aligning care with, older adults’ health outcome goals and care preferences), “medication” (using age-friendly medication and screening for the use of specific high-risk medications), “mentation” (screening for and documenting depression, dementia, and delirium), and “mobility” (screening for the ability to move around safely).

In 2021, the Institute for Healthcare Improvement issued a directive for Age-Friendly Health Systems to apply the 4Ms equitably, by race and ethnicity, across their older adult patient populations. To date, more than 1000 care settings, including hospitals, clinics, and nursing homes, have joined this initiative. It is not clear how many ADSCs are part of the initiative. Participating organizations will be required to record the racial/ethnic breakdown of their patient populations. This is particularly important for ADSCs, where these data are not routinely collected and will represent a significant advance in data collection. Linking the quality measures within the 4Ms framework to the rigorous collection of racial and ethnic data in the initiative will help researchers and policymakers understand the effects they have on the individuals they serve. Analyzing data stratified by race and ethnicity and taking concrete and measurable actions to address disparate outcomes would represent an evolutionary step forward toward health equity for community-dwelling older adults.

It is important to note that, to pursue or actualize any data collection efforts, ADSCs will require support and incentives. Currently, they do not have systematic requirements or structures across states to collect or use outcome data.³¹ Similar to many providers of long-term care services, ADSCs are facing critical staffing shortages and are struggling to keep their doors open.³⁰ Forcing additional data collection may be perceived as burdensome, particularly as centers struggle to make up for financial losses during periods of closure. One possible solution is improving their partnerships with managed care companies that administer Medicaid plans and offering financial incentives for improved outcomes.

CONCLUSIONS

The COVID-19 pandemic has seriously affected the health and well-being of older adults, particularly those who identify as members of racial/ethnic minority groups. We have summarized evidence suggesting that people who receive care in ADSCs and their care partners suffered disproportionately when their access to essential services and support was taken away with little or no notice in March 2020, and in many cases this access has yet to be fully restored 2 years later.

Lack of large-scale data on unmet health and social needs resulting from ADSC closures is a direct affront to health equity. More investment in and data from ADSCs that reflect evidence-based quality measures are needed to demonstrate the benefits centers have for frail older adults and their care partners and strengthen programs that will benefit the physical and emotional health of older adults in the wake of the COVID-19 pandemic. Valid and reliable measures, such as those endorsed by the National Quality Forum,⁴¹ would enable fair comparisons and benchmarking between ADSCs and other long-term care settings. Incorporating the 4Ms framework and the Data Modernization Initiative into data collection and engaging managed care programs have the potential to garner the attention of payers and health systems, which will help bring their attention to the essential and successful work of ADSCs with frail older adults who have complex health and social needs.