Caregiver Health and Well-Being, and Financial Strain

Abstract 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 is needed to recognize and support family caregivers in the U.S adequately.


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 is needed to recognize and support family caregivers in the U.S adequately.

CAREGIVER NEEDS: NAVIGATING SERVICES, TECHNOLOGY, AND INFORMATION C. Grace Whiting, National Alliance for Caregiving, Washington, District of Columbia, United States
Data suggests that caregivers may be taking on this role without adequate and affordable services and supports in place. Few caregivers report access to paid help and find it difficult to navigate a healthcare system that is complex and that changes continuously. Caregivers find it challenging to coordinate their recipients' care across various providers, and the lack of affordable services make it difficult to be a caregiver today. While many caregivers rely on health care professionals (such as doctors, nurses, or social workers) as a source of information about providing care, few caregivers report having conversations with them about what they need to care for their recipient or to support their well-being. In this section, the presenter will discuss the needs of caregivers (respite, transportation, information, and training), focusing on policy and programmatic solutions geared to improving the well-being of caregivers and those under their care.

CHALLENGES FOR PREVENTION OF ELDER ABUSE IN JAPAN: VIEWPOINTS FROM LEGAL AND PRACTICE SETTINGS Chair: Cynthia Thomas Discussant: Tsuann Kuo
This symposium begins by fist comparing features of the Japanese elder abuse prevention law to 3 other abuse prevention laws -child abuse, domestic abuse and abuse against people with disabilities. It highlights amendments that have been made to the child abuse and domestic abuse prevention laws since their enactment based on implementation experience, drawing contrast to the lack of amendments made to the elder abuse prevention law despite its three-year requirement for amendment review. Overall strengths and weaknesses of the elder abuse law are discussed including needed areas of revision. Second, a case study of nearly two decades of elder abuse prevention activities in Matsudo-city are presented and the subsequent enactment in April 2020 of a new regulation of the city is discussed. In addition, interim outcomes of a related research study in Matsudo-city on elder abuse involving non-caregivers for elderly people that will expand understanding of abuse prevention efforts are presented. Third, how can we abolish elder abuse in institutional settings will be discussed by analyzing elder abuse case studies. Finally, the most updated research outcomes conducted in in-home care service settings in 2020 will be presented. Its preliminary analyses revealed out of 1,417 responses, 2.9% were found to be "body restraints." Such abusive actions are less likely to be detected by others. The symposium concludes by assessing challenges for preventing elder abuse in policy and practice.

CHALLENGES FOR ELDER ABUSE PREVENTION LAW
Noriko Tsukada, 1 and Asako Katsumata, 2 , 1. Nihon University,Tokyo,Tokyo,Japan,2. Rehabilitation Institution,Chiba,Tokyo,Japan This paper compares components of four abuse prevention laws in Japan, including elder abuse, child abuse and domestic abuse, and abuse for people with disabilities and delineates major strengths and weaknesses of the Elder Abuse Prevention Law in comparison to the other three. Based on this analysis, this paper recommends improvements in the elder abuse prevention law given the success of the related abuse laws. Despite the requirement of re-evaluation every 3 years, no amendments have been made to the elder abuse prevention law, while amendments have been made to the child abuse and domestic abuse prevention laws, based on outcome data and implementation experience. Identified needed revisions include provisions of protection orders and temporary shelters to protect elder victims from abusers at the time abuse is reported.

CHALLENGES FOR PRIVATE LTC SERVICE PROVIDERS FOR PREVENTING ELDER ABUSE
Naoki Ikeda, 1 and Noriko Tsukada, 2 1. Kamihonnmachi Law Office, Tennouji-Ku, Osaka, Japan, 2. Nihon University, Tokyo, Tokyo, Japan his paper aims to identify factors that differentiate long-term care (LTC) service providers into the two categories: those who are successfully growing and those who are going out of business. During the past 5 years, about one out of 100 private LTC service providers has gone bankrupt in part due to issues of client abuse. This paper uses case studies to demonstrate differences between LTC service providers who have histories of elder abuse and those that do not. Business traits such as mission, client trust, and quality of LTC workers is considered along with implementation of abuse prevention practices including management approaches, oversight of workers, and atmosphere where LTC workers have their working conditions and concerns addressed, which in turn enhances workers satisfactions, accordingly, yielding better quality of care provisions.

EFFORTS FOR CONSTRUCTION OF MORE EFFECTIVE PREVENTION AND MORE INCLUSIVE PROTECTION SYSTEMS IN MATSUDO CITY
Tadashi Wada, 1 Hitoshi suda, 2 and Kana Sato, 3 1. Irahara Primary Care Hospital, Matsudo City, Chiba, Japan, 2. Seitoku University, Matsudo, Chiba, Japan, 3. Teikyo University of Science, Adachi, Tokyo, Japan Matsudo City is preparing to implement an ordinance so that 3 protective services for children, older persons, and people with disabilities can work together for efficient prevention. Supporting pregnant women is sometimes effective for prevention of future child abuse. Supporting people with disabilities is often prevention of future neglect caused by them. Supporting perpetrators and victims of domestic violence is effective to prevent future elder abuse by interruption of abusive behaviors. We expect to prevent abuses