Political Impediments to Aging in Place: The Example of Informal Caregiving Policy

Abstract Most Americans prefer to “age-in-place” as long as possible, but to do so often need overlapping resources—one of which is help from “formal” or “informal” caregivers (family and friends). Family and friends often want to provide care for as long as safely possible. However, informal caregiving can pose financial and physical risks to the caregiver that—as many scholars have noted—public policy in the U.S. does relatively little to mitigate. This policy shortfall also hurts care recipients since the risks that informal caregivers face can prematurely curtail their ability to provide care. Why does policy in the U.S. not better support informal caregivers? By synthesizing family caregiving research and political science research that has addressed long-term care, this paper surveys nine factors in the political system that may help answer this question. Four emanate from policy history. Three concern the mass public. Two vary at the policy level.


LEARNING LESSONS FROM LONG-TERM CARE POLICY FINANCING EFFORTS IN THE UNITED STATES Michael Lepore, LiveWell Alliance, Southington, Connecticut, United States
A decades-long policy impasse has crippled our national capacity to finance long-term care (LTC) sufficiently or equitably, leaving large swaths of the US population at risk of going broke paying privately for LTC or having unmet LTC needs, while also draining state and federal budgets. By reviewing past LTC financing policy efforts-from the passage of the Social Security Act and the enactment of Medicaid and Medicare, to the LTC financing proposals advanced by 2020 presidential candidates-the political interplay of budgetary concerns in government spending and social justice concerns regarding access to care emerged as a primary LTC policymaking issue. Establishing national consensus on the prioritization of these fiscal and social justice concerns, and their respective values, could help lawmakers craft policy capable of generating the political will needed to overcome political gridlock. Clarifying how LTC benefits would be paid for appears to be a relatively straightforward technical task in comparison.

THREE TRENDS SHAPING THE POLITICS OF AGING IN AMERICA Nora Super, Milken Institute, Washington, District of Columbia, United States
The demographic bulge created by the baby boom generation has shaped American politics since they came of age in the 1960s. Over the next decade, aging issues will become more relevant as the oldest boomers reach 84 and the youngest boomers will be eligible for Medicare. This paper highlights three converging trends that will shape United States politics; including increased spending on "entitlement" programs like Social Security and Medicare, growing mismatch in caregiving need and supply, and the heightened concentration of older adults in certain geographic areas. The next decade will see not only extraordinary demographic change but also unprecedented advances in technology and medicine, and cultural and societal shifts that were once unimaginable.

THE MEANING OF AGE OR GENERATIONAL DIFFERENCES IN U.S. POLITICAL VALUES AND PRIORITIES Judith Gonyea, and Robert Hudson, Boston University, Boston, Massachusetts, United States
Nations globally are facing the fiscal consequences of being aging societies, including the redistribution of wealth resources across sectors that influence generational relations (i.e., healthcare, education, public pensions). Political differences or clashes between youth and older adults is not a new phenomenon. However, questions are being raised about whether current political systems, governing structures, and social trends are eroding generational solidarity which traditionally has a role in promoting equity and protecting vulnerable individuals from rapid social change. Reflecting on the 2020 national election results and political opinion surveys, we explore the meaning of age or generational differences in political attitudes in an increasingly partisan society. We suggest that the use of a generational location or habitus lens, which focuses on the distinct sociohistorical realities (i.e., different reference points, systems of aspiration, sets of anxieties) that shape age groups and their interrelations, may offer insights into current political debates and divides.

POLITICAL IMPEDIMENTS TO AGING IN PLACE: THE EXAMPLE OF INFORMAL CAREGIVING POLICY Jacqueline Chattopadhyay, UNC Charlotte, Charlotte, North Carolina, United States
Most Americans prefer to "age-in-place" as long as possible, but to do so often need overlapping resources-one of which is help from "formal" or "informal" caregivers (family and friends). Family and friends often want to provide care for as long as safely possible. However, informal caregiving can pose financial and physical risks to the caregiver thatas many scholars have noted-public policy in the U.S. does relatively little to mitigate. This policy shortfall also hurts care recipients since the risks that informal caregivers face can prematurely curtail their ability to provide care. Why does policy in the U.S. not better support informal caregivers? By synthesizing family caregiving research and political science research that has addressed long-term care, this paper surveys nine factors in the political system that may help answer this question. Four emanate from policy history. Three concern the mass public. Two vary at the policy level.

REFRAMING AGING IN CONTEMPORARY POLITICS: BUILDING MOMENTUM
Patricia D'Antonio, The Gerontological Society of America, Washington, District of Columbia, United States Changing American culture is challenging and changing attitudes and behaviors around the universal experience of aging especially so. Unless the field of advocates who care about aging issues cultivates a more visible, more informed conversation on older people, it will remain difficult to advance the systemic changes needed to adjust to a society with increased and increasing longevity. Advocates will need to be vigilant to avoid cueing negative attitudes towards aging and aging policies. The Reframing Aging Initiative is a long-term, social change endeavor designed to improve the public's understanding of what aging means and the many contributions older people bring to society. Using evidence-based research, the initiative seeks to teach advocates how to tell an effective story about aging that will promote positive perceptions of aging and reduce ageism. The time to change the conversation is now.

CAREGIVING IN THE U.S. 2020: WHAT DOES THE LATEST EDITION OF THIS SURVEY TELL US ABOUT THEIR CONTRIBUTIONS AND NEEDS? Chair: Gabriela Prudencio Discussant: Heather Young
Family and friends comprise the most basic unit of any society. For individuals who take on the responsibility of caring for another person through sickness or disability, it can often be challenging to see beyond the individual experience. Yet in the aggregate, family caregivers-whether they be families of kin or families of choice-are woven into the fabric of America's health, social, economic, and long-term services and supports (LTSS) systems. As the country continues to age, the need to support caregivers as the cornerstone of society will only become more important. A national profile of family caregivers first emerged from the 1997 Caregiving in the U.S. study. Related studies were conducted in 2004, 2009, and 2015 by the NAC in collaboration with AARP. Caregiving in the U.S. 2020 presents a portrait of unpaid family caregivers today. A nationally representative survey (n=1,499), it replicates the methodology used in 2015. Therefore, during this symposium, AARP and NAC will present trend data from 2015 in comparison to 2020, and explore key subgroup differences. The presentation will cover prevalence, demographic characteristics, intensity and duration of care, the well-being of caregivers, the financial impact of family caregiving on caregivers themselves, and the degree to which technology supports caregivers today.

THE 2020 PORTRAIT OF AMERICAN CAREGIVERS Regina Shih, RAND Corporation, Arlington, Virginia, United States
The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

THE UNIQUE CHALLENGES AND CONTRIBUTIONS OF DIVERSE CAREGIVERS Rita Choula, AARP, Washington, District of Columbia, United States
Caregiving in the U.S. 2020 oversampled African Americans, Hispanics, Asians, and people over the age of 75. Six in ten caregivers report being non-Hispanic white, 17% are Hispanic, 14% non-Hispanic African-American or black, 5% Asian/Pacific Islander, and 3% some other race or ethnicity, including multiracial. The session will emphasize the unique context of diverse caregivers, including African American, Hispanic, Asian, and LGBT+ caregivers. The session will begin by discussing the portrait of the typical caregiver of each of these groups. It will follow with a discussion of the challenges facing diverse caregivers in the aggregate and the opportunities to recognize and support them across settings. Family caregivers often face key challenges when caring for a relative or close friend with health or functional needs. This paper presents findings from Caregiving in the U.S. 2020 on the impact of caregiving on the physical health and well-being of family caregivers and the financial impacts of family care. The data suggest that the caregiver's own health has declined, with 1 in 5 (21%) saying they are in fair to poor health themselves, up from 17 percent in 2015. Nearly 1 in 4 (23%) feel caregiving has made their health worse. Nearly 4 in 10 (38%) family caregivers of adults experience a moderate to a high degree of financial strain from providing care. Forty-five percent have experienced at least one financial impact (e.g., stopped savings, debt, ability to pay bills, and ability to afford necessary expenses, like food). These findings reveal that because family caregiving today is more complex, costly, and stressful than in the past, action