Reimagining and Transforming Long-Term Care

Abstract:

This article highlights the racial/ethnic disparities predating COVID-19 in long-term care (LTC) settings that contributed to the disproportionate impacts of the pandemic on older adults of color, shares insights on the potential consequences of failing to address these inequities as we rebuild and address the insufficiencies in the LTC delivery system, and offers a seven-point blueprint with key tools to ensure that equity is at the center of rebuilding and modernizing the delivery of LTC. This will enable all older adults the opportunity to receive high-quality care and live a full life of dignity and independence as they age.

Key Words:

racial and ethnic disparities, long-term care, inequity, COVID-19, direct care work

COVID-19 has disproportionately affected communities where, historically, there has been less opportunity. Black, Latino, and American Indian/Alaska Native people have been infected, hospitalized, and died at higher rates than White people. COVID-19 did not create these disparities and these disparities are not random, but the direct result of a long history of systemic inequality due to a lack of social, economic, and political opportunities.

In the United States, older adults of color have long experienced a plethora of intersecting challenges and inequities that make them more susceptible to poor outcomes across all aspects of life. This includes, but is not limited, to the following:

• Lower quality of long-term care (LTC): Nursing homes that serve predominantly Black and Hispanic residents have been associated with lower levels of staffing, higher numbers of government-cited nursing home deficiencies, and lower quality of life, among other quality measures, and the gap is increasing over time (Grabowski and & McGuire, 2009; Park and & Martin, 2018; Shippee et al., 2020)). These disparities in LTC are not unique to institutional care settings like nursing homes: a growing body of research shows racial and ethnic differences also exist in home- and community-based settings (Shippee et al., 2020).
• Unequal access to services and care: Where people live has a tremendous impact on the experience they are likely to have when the need for long-term supports and services (LTSS) arises. Wide disparities across states and gaps in support can affect millions of people who encounter a fragmented, expensive LTSS system, often with little choice of setting or care. Existing evidence highlights racial/ethnic differences in access to needed care and utilization of services. Research shows that although relatively few Medicare beneficiaries cite problems with access to care, a larger share of Black and Hispanic beneficiaries report difficulty getting needed care than White beneficiaries (Ochieng et al., 2021). Also, in a recent JAMA study, researchers found Black and Hispanic Medicare patients referred to home health after a hospital discharge received home health at lower rates than did patients who were White (Li et al., 2020).
• Limited opportunities to age with options: The racial wealth gap impacts people’s ability to age with options. The relatively high entry and monthly fees at Continuing Care Retirement Communities (CCRCs) are economic barriers that perpetuate the lack of diversity in these communities. Independent living residents are 95% Caucasian, with only 4% listed as Black, and 1% listed as Asian, according to this 2018 report (The Love Report & Company, 2018). Homeownership likely plays a significant role in that disparity, as many couples and older adults moving to a senior living community will sell or rent their home to generate cash or a higher income.
• Excess burden of multiple chronic conditions: Older adults of color are more likely to experience multiple chronic health conditions (e.g., heart disease, osteoporosis, diabetes, or dementia) due to a history of longstanding structural and systemic inequities rooted in ageism, racism, and discrimination (Chatters et. al., 2020).
• Overburdened family caregivers: Like the general population, older adults of color who need LTC overwhelmingly depend upon unpaid relatives, friends, or neighbors for their daily care needs, enabling them to remain in their homes and communities where more people prefer to be. However, compared to their White peers, they are more likely to be cared for by family and friends who report experiencing greater financial, physical, and emotional burdens of caregiving due to a myriad of factors, including lower household incomes and higher intensity care situations (AARP and National Alliance for Caregiving, 2020; Skufca & Rainville, 2021). African American caregivers also are less likely to self-report being in excellent or very good health compared to Non-Hispanic White caregivers.
• Underpaid and unvalued paid direct-care workers: Given the aging of the population, demand for direct-care workers—people who assist older adults with LTC needs—is projected to significantly outstrip supply. But there is a lack of meaningful support for paid direct-care workers. Poor working conditions, lack of opportunities for career advancement, limited training opportunities, low wages and benefits, and long hours are just some of the factors hindering the recruitment and retention of qualified direct-care workers. Nearly 90% of direct-care workers are women and about 62% are people of color. Due to low wages, the median annual income for a direct care worker is $20,200, leading close to half of them to live in low-income households and require some level of public assistance (Campbell et al., 2021).

COVID-19 Exposed, Exacerbated, and Amplified Systematic Inequities

While the long-lasting impact of the pandemic has yet to be seen, a growing body of evidence indicates communities of color experienced the worst symptoms of COVID-19, and past experiences show the path to recovery could be steep without targeted interventions.

• Higher rates of cases, hospitalizations, and deaths: In the U.S. alone, the pandemic has claimed the lives of more than 186,000 residents and staff of nursing homes and other LTC facilities (“AARP Nursing Home COVID-19 Dashboard”), many of whom were older adults from communities of color (Li et al., 2020). While 37% of nursing homes with a high share, defined as 20% or more, of White residents reported at least one COVID-19 death, far more nursing homes with a high share of Black residents (63%) and Hispanic residents (55%) reported at least one COVID-19 death (Chidambaram et al., 2020).
• Uneven access to the COVID-19 vaccine: White people make up the largest share (67% as of March 7, 2022) of unvaccinated people, yet Black and Hispanic people have been less likely than their White counterparts to receive a vaccine throughout the vaccine rollout (Ndugga et al., 2022). While these disparities have narrowed over time and been eliminated for Hispanic people, racial and ethnic differences persist in areas like access to booster doses. Over the course of the pandemic, Black and Hispanic populations have faced significant barriers to accessing the vaccine such as issues with transportation to get to vaccination sites, lack of internet or poor internet access, language barriers and obstacles due to immigration status (Galewitz, 2021; Nye & Blanco, 2021).
• Greater socioeconomic impact: The pandemic has been accompanied by social and economic disruptions for older adults throughout the country and across the globe (Li and Mutchler, 2020), revealing that communities of color lack the resources to fight the pandemic, on top of other challenges (Cohen et al., 2020).
• Greater risk of exposure to COVID: Direct care workers are essential workers. The nature of their occupation requires them to be on the front lines of this pandemic in close physical contact with those under their care. They are placing themselves under considerable risk with insufficient support and low wages, along with limited benefits and opportunities for upward mobility. The industry already faced a workforce shortage, which the pandemic only exacerbated, making it even more difficult for employers to attract and retain staff.

While this article focuses on the challenges facing older adults of color from the U.S. perspective, these issues are not unique to the United States. Globally, the World Health Organization (2020) found that, in many countries, more than 40% of COVID-related deaths have been in LTC facilities, with figures as high as 80% in some high-income countries.

COVID-19 laid bare the fragility of healthcare systems and the inability of LTC systems across the globe to cope with the challenges brought about by the pandemic, leaving the most vulnerable severely impacted (Tikkanen et al., 2020). In the United Kingdom, Black, Asian, and Minority Ethnic (BAME) doctors and other healthcare workers accounted for 63% of all deaths among National Health Service staff, despite representing about a quarter (21 %) of total staff population (“COVID-19: The Risk to BAME Doctors”). In developing countries, extreme inequalities put people at a greater risk of serious illness and death. People experience multidimensional poverty and lack access to everyday necessities such as proper sanitation and running water, and live in overcrowded, unsafe homes.

Why Addressing Inequities Matters

The cost of preserving the status quo is something we collectively cannot afford. Persistent differences in outcomes by racial/ethnic groups are concerning for individuals and families, and they pose serious implications for the healthcare and LTC systems if not addressed.

• Widening disparities: The United States is experiencing a significant demographic shift. The latest U.S. Census Bureau projections show that the United States is much more racially and ethnically diverse than ever in its history, increasing the likelihood of a greater demand for LTC tailored to the needs and preferences of diverse populations (“Improved Race and Ethnicity Measures”). Failure to swiftly address the inequities facing older adults of color could widen racial/ethnic disparities.
• Increased pressure on families: As the country becomes more diverse over time, we will see an even greater population of diverse family caregivers. Right now, 17% are Hispanic or Latino, 14% Non-Hispanic African American or Black, 5% Asian American and Pacific Islander, and 3% another race or ethnicity, including multiracial. These demographic shifts and trends have profound implications on public policy, programming, service delivery, marketing outreach, the workplace, and the marketplace. These projections also have severe implications for older adults from communities of color who are more likely to have complex care needs. Even the financial cost of family caregiving seems to hit certain communities harder. AARP’s 2021 Caregiving Out of Pocket report found that, overall, family caregivers spent more than a quarter (or $7,242) of their income, on average, on out-of-pocket expenses in 2021—a head-turning data point in itself. Yet the strain was even greater on Hispanic/Latino and Black caregivers, who spent 47% ($7,167) and 34% ($6,746), respectively, of their incomes on caregiving activities.
• Ballooning healthcare and LTC expenditures: By all indications, the United States, like other countries across the globe, will continue to grapple with rising LTC spending in the foreseeable future (Global Coalition on Aging, 2018). Research shows racial/ethnic inequities strain federal, state, and local resources and funds (Nanney, 2019). In addition to the direct impacts of these disparities, there are indirect consequences to not addressing inequities (e.g., loss of productivity, longevity gap, lost lives). Therefore, tackling these inequities can help maintain growing costs while enabling all older adults to live fuller and healthier lives.
• Stifles economic growth: Preserving inequities, which have only been exacerbated by COVID-19, stifles economic growth. The Kellogg Foundation reports that closing the disparities gap would generate an additional $8 trillion to U.S. GDP by 2050, an increase in additional federal tax revenues by $450 billion, and state and local tax revenues by $100 billion annually. As we start to recover, we need to ensure everyone has the opportunity to live a longer, healthier, and more productive life. This is not just a moral imperative: it’s also an economic necessity that impacts all of us.

How to Create an Equitable LTC System

As we reimagine and transform the LTC system in a post-pandemic world, it is essential to ensure equity is a foundational element by designing for and with people in the margins. Advocates and other stakeholders have long called for a consumer-centric approach to the design and delivery of LTC that is tailored to individual needs and promotes consumer independence, choice, dignity, autonomy, and privacy.

Services and supports should be delivered from the perspective of the individuals receiving care. To this end, it is imperative to fully engage communities by taking time to listen deeply to understand their lived experiences, looking first at what they have rather than what they lack and then and to co-create solutions as true partners in efforts to improve outcomes across all aspects of life.

The pandemic, for better or for worse (or both), has drastically changed our societies, our communities, and—in many ways—us. Some “new normal” will emerge, in which novel systems and assumptions will replace many others long taken for granted.

However, fate will not create this new normal; intentionality and choices will. If leaders in LTC are serious about ensuring equitable access to high-quality LTC, they must tackle today’s challenges facing vulnerable communities head-on—intentionally, strategically, and collaboratively.

The following is a blueprint for building this new LTC system that can help guide policymakers, businesses, and providers in their efforts to develop and implement solutions that improve the lives of older adults and their families.

1. Pursue systemic change via an examination of current policy and programmatic efforts. Conduct a comprehensive audit to ensure that policies, programs, and services are not perpetuating inequities. Half of Michigan’s population lives in 10 counties in the southeast part of the state. In one of those, Wayne County, 40% of older adults are non-White. But only a third of the state’s total HCBS waiver slots are available in those 10 counties. In other words, there is only one waiver slot for every 58 eligible individuals in those counties, compared to one slot for every 20 eligible individuals in the rest of the state.
2. Meet consumers and their families where they are. The pandemic underscored the importance of understanding and accounting for differences in individuals’ beliefs, behaviors, and unique needs. Rather than putting the onus on the most vulnerable to navigate challenges that impede their pursuit of better and healthier lives, leaders in LTC should tailor interventions and programs around them. For example, some providers opted to go directly into communities to administer the vaccine to homebound and ill older adults when it became clear the most vulnerable were facing challenges accessing it (Graham, 2021).
3. Address the non-clinical measures of health and well-being. If the pandemic has taught us anything, it is that social determinants of health or SDOH (“Healthy People 2030”) shape one’s health, well-being, and quality of life. Whether it is connecting older adults dealing with social isolation to local community-based supports or ensuring that an individual with low income and few resources has the means to get to their next medical appointment, leaders of LTC must tackle the non-clinical barriers to health if they hope to achieve equity in LTC.
4. Take care of those who care for the most vulnerable. COVID-19 has demonstrated how much the healthcare and LTC systems depend upon unpaid family caregivers and paid direct caregivers to care for people through sickness and disability. Particularly in the context of the pandemic’s impact on nursing home residents, we witnessed—both nationally and globally—how crucial family connections and support were for residents’ physical and emotional well-being (Hado and Feinberg, 2020; Verbeek et al., 2020). Adopting essential policies such as paid sick and medical leave is critical to ensuring that caregivers have the resources to support their loved ones and their personal health and economic security, especially in times of crisis. It is imperative that direct care workers receive adequate wages, health and retirement benefits, and training opportunities. Moreover, career ladders to encourage recruitment and retention of LTSS workers should be provided.
5. Strengthen data collection, analysis, and reporting. The key to addressing inequities is data. Having disaggregated data by demographic variables like race and ethnicity (Carter & Hado, 2020) and accounting for intersectionality—or overlapping identities of multiple demographic categories such as age, gender, education, and geography—in data analyses and research (Holman & Walker, 2021) will enable leaders in LTC to better detect and understand the root causes of disparities and develop targeted policy interventions and programs.
6. Embed anti-racial discrimination and social justice practices at the organizational and provider level. Health plans and providers can create more equity by embedding anti-racial discrimination and social justice approaches in all aspects of care, including provider training and education as exemplified in the American Medical Association’s 2021–23 strategic plan to tackle systemic racism in medicine and promote health equity (“Organizational Strategic Plan”).
7. Establish emergency preparedness and disaster planning guidelines at the federal, state, and local level. The pandemic has shown the consequences of not planning for the worst-case scenario, with its worst impacts felt by vulnerable communities. Now more than ever, federal, state, and local leaders in LTC need to think broadly and creatively about all the ways to protect consumers and their families in emergencies.

Conclusion

This pandemic is an opportunity for a big reset. Reducing racial/ethnic disparities is critical to national and state efforts to reform the LTC infrastructure. One cannot happen without the other. It is time to reimagine and build an LTC system that is more equitable, and where race and other sociodemographic factors do not determine health outcomes. Equity will enable not only greater prosperity, but also the means to withstand, hold steady, and come out strong in future crises.

We have a very real chance to rewrite the script of a post-COVID America—a script where the sequel can be better than the original. It is our collective responsibility not to return to the status quo of pre-pandemic times, because opportunities to receive high quality LTC were not shared equally. Now is the time to work collectively across America—at all levels of government and the nonprofit and private sectors—to expose and address the growing inequities that impact people’s dignity to age with options. As we imagine our post-COVID world, we need to remember that if we want a better world tomorrow, we need to speed the pace of progress against inequality today.

Let’s write a new story, and let’s make the script of America 2.0 so much better than the original.

Jean Accius, PhD, is senior vice president, AARP Global Thought Leadership, and Edem Hado, MPH, is policy research senior analyst at AARP Public Policy Institute, both in Washington, DC.

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