Pamela Nadash

In the U.S, the roughly 70% of family caregivers who are employed face challenges balancing work and family responsibilities—which can threaten their longer-term financial well-being. Thus, the National Strategy to Support Family Caregivers (2022) focuses on increasing the availability of workplace protections and supports. This study provides stakeholder perspectives on caregiver-friendly workplace policies, drawing on data collected to support the development of the Strategy. Data were collected from qualitative interviews and focus groups with stakeholder organizations, comprising 34 individuals, aiming to identify key issues in encouraging caregiver-friendly workplaces. Respondents supported the need for systematic approaches in support of that shift and offered ideas for catalyzing it, stressing the importance of supportive workplace environments. They highlighted employer variation in capacity to adopt practices and the need for a range of options that accommodate employer and employee heterogeneity. Furthermore, they described the role of data in informing employers and policy.

As the population ages and supportive services are increasingly delivered in home and community-based settings, greater demands are placed on family caregivers. This introduction examines signs of progress on policies to ease the burden on family caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports as well as to those providing supports. It then provides an overview of the chapters in this volume. This content is divided into three sections. The first addresses the impact of caregiving on caregivers’ workplace and financial security. The second examines the ways in which caregiving interacts with other systems. The last provides a portrait of caregiving and makes the case for better data on caregivers and caregiver interventions.

How can public policy support the growing population providing unpaid care to people with disabilities, older people, or people with dementia, and what are the policy implications of the growing need for caregivers? This book presents a variety of perspectives on this topic, ranging from policies enabling caregivers to remain in the workforce to the impact of caregiving support on the utilization of healthcare and other services. More and more people across the globe are becoming family caregivers: they are providing unpaid care to a loved one who is perhaps chronically ill, has a disability, or has dementia. This responsibility can affect the health and wellbeing of not only the person receiving care, but also the caregiver. While the physical, emotional, and financial consequences of caregiving are receiving growing attention, less attention is paid to the policies that aim to mitigate those impacts, as well as the broader policy implications of this increasing population of caregivers. This volume was inspired by the need to highlight this growing body of research, addressing topics that range from strategies enabling caregivers to remain in the workforce to the impact of caregiving support on the utilization of healthcare and other services. Given the important role that family caregivers play in improving the lives of people needing care, it is critical that the policies that impact their ability to do so be understood and examined. This book was originally published as a special issue of the Journal of Aging & Social Policy.

Although the primary goal of self-directed programs providing long term services and supports (LTSS) is to maximize choice and control for service recipients, such programs may also benefit family caregivers by compensating them for providing supportive services. This study draws on qualitative data from research supporting the RAISE Family Caregiver Advisory Council, finding that family caregivers themselves see the expansion of self-directed programs as a policy priority due to their need for financial security. The request for compensation was the strongest finding, with respondents highlighting the incompatibility of work with caregiving and their inability to rely on the existing paid workforce due to supply and quality issues; the consequences of this loss of earned income were reported as severe. Ultimately, respondents saw payment for providing care as an issue of fairness. This evidence supports the policy case for expanding access to self-directed programs that permit the employment of family caregivers.

Background and Objectives: This study examined the association between COVID-19 concerns and depression among adults in later life. We also examined whether race/ethnic status moderated this relationship. Research Design and Methods: This study used data from the 2020 Health and Retirement Study. Using the 8-item CES-D scale, we defined probable depression as having three or more depressive symptoms. COVID-19 concerns included items such as concerns about respondents’ own health, the health of family members, respondents’ ability to get help from others, and concerns about the future. The associations between COVID-19 concerns and older adults’ depression were estimated with logistic regression models. Results: Compared to respondents with lower scores on the COVID-19 concern measures, those with higher scores were more likely to be depressed. The moderation model showed the relationship between concerns about what will happen in the future and depression was not as strong among non-Hispanic Black older adults compared to non-Hispanic White older adults. Concerns about own health, family members’ health, the older adult’s financial situation, and the ability to get help did not show moderation effects. Discussion and Implications: The results suggested that healthcare providers should focus on older persons to reduce disparities in the risk of depression during public health emergencies.

Background and Objectives: Older adult-focused housing with services programs seek to improve access to supportive services, particularly among individuals residing in subsidized housing. The Right Care, Right Place, Right Time (R3) program comprises 2 on-site wellness teams responsible for 400 participants across 7 housing sites in Greater Boston. These embedded teams work directly with residents to address health-related needs and access to services. This study reports on the perceived benefits of participating in the R3 program from the perspective of housing staff and community partners. Research Design and Methods: Data were derived from 24 semistructured interviews conducted as part of a program evaluation. Participants described resident, housing, and system-related reasons for deciding to participate in the R3 program and their experiences of their participation. Results: In addition to positive overall assessments, housing partner interviewees reported concrete and psychosocial benefits for housing residents (e.g., connecting with resources, enabling longer stays, empowering residents, alleviating distress) and staffing and resident-related benefits. Community partners perceived more appropriate utilization of services by residents (e.g., reducing emergency transports). Discussion and Implications: Findings elucidate why housing and community partners might be motivated to integrate housing, health, and supportive care into affordable housing for older adults using a wellness team.

As the population ages and supportive services are increasingly delivered in home- and community-based settings, greater demands are placed on family caregivers. This essay introducing the special issue of the Journal of Aging and Social Policy discusses signs of progress on policies to ease the burden on family caregivers. It introduces a series of articles that reflect the growing body of research on caregiver-related policy actions. These actions range from expanding access to paid family leave and payment for providing care, to ensuring access to better data about family caregivers and improving the post- hospital discharge experiences of rural and underserved caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports, as well as to those providing supports. In addition, the essay discusses developments, such as Biden administration actions and the RAISE Family Caregiver Advisory Council, indicating that the political dynamic around caregiving has changed, concluding that this is a uniquely hopeful time for family caregiver-related policy.

Through the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act of 2018, the RAISE Family Caregiver Advisory Council was created. Since 2019, the Council has directed in-depth information-gathering and research efforts to develop recommendations and an implementation plan for addressing our critical family caregiving crisis. The Council recently released the 2022 National Strategy to Support Family Caregivers, which highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. Integrating measures of improvement with regard to family caregiver support, across the domains identified in the National Strategy into the LTSS State Scorecard will provide a tool by which progress toward the RAISE goals can be measured. Currently, the Scorecard focuses on indicators specific to Supporting Working Family Caregivers. While these are critical, our research team has identified at least 10 additional indicators that could be included and that would address other caregiver support domains such as adequacy of direct care workforce, integration of family caregivers into care plans, direct pay to family caregivers, and more. In this session we will identify the indicators, explain how they relate to RAISE goals and discuss methods for including them in the Scorecard.

This presentation reports on feedback from advocates and researchers, those working in organizations serving family caregivers, and family caregivers themselves regarding the 2022 National Strategy to Support Family Caregivers. The Strategy was issued by the RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018). A Request for Information (RFI) published in the Federal Register garnered nearly 600 responses from a wide range of individuals and organizations, providing feedback about top priorities for action, topics or populations that were not adequately addressed, and recommendations for actions that could help meet stated objectives; these comments will prove critical in implementing the National Strategy, as well as in updating and revising it. This presentation sets the progress of the National Strategy in context, reports on the RFI analysis, and describes next steps, highlighting key areas of focus for the federal government, states, and other entities. Priorities included expanding the direct care workforce and increasing access to caregiver training and supports, particularly respite. Other top comments pertained to financial and workplace security for family caregivers - encouraging caregiver-friendly workplaces, paying family members to provide care, and strengthening the Family and Medical Leave Act. Respondents broadly endorsed the Strategy and noted the need for campaigns promoting greater awareness of family caregiving. The findings suggest that there is strong consensus among caregiver advocates regarding the most critical areas for action and the most favored strategies to achieve caregivers’ priority goals.