The AARP Public Policy Institute focuses on issues of critical importance as we age. Below we highlight research, analysis, background and commentary on Caregiving.
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For the first time in ten years, this research report examines the scientific literature on multicultural (African-American/Black, Asian-American Pacific Islander, Hispanic/Latino, and Native-American) caregiving and caregiving interventions for the last three decades. The methodology used involved three phases: Phase I was a literature search on the topic of multicultural informal caregiving of older adults; Phase II identified articles meeting inclusion and exclusion criteria; and Phase III constructed an evidence table and systematic analysis synthesizing the literature. Findings are summarized into four major themes: i) Experience of Caregiving; ii) Social Support Access and Utilization of Caregiving Resources; iii) Predictors and Outcomes of Caregiving; and iv) Caregivers Interventions. Finally, we offer recommendations and propose an action agenda for research to move the field forward.
Authors: Ester Carolina Apesoa-Varano, MA, PhD., Yajarayma Tang-Feldman, MA., James Rodgers, MA., Susan Reinhard, PhD, RN, FAAN, Rita Choula, BS, Heather M. Young, PhD, RN, FAAN.
How livable is your community?
The Home Alone AllianceSM is a partnership of public, private, and nonprofit sector organizations coming together to change the way health care organizations and professionals interface with family caregivers. Read
On December 1, 2016 the AARP Public Policy Institute held a Solutions Forum featuring a discussion of the National Academies of Sciences, Engineering, and Medicine’s recent consensus report, Families Caring for an Aging America. Learn more about the report, the event, the issues, and the call to action by viewing the sizzle reel that showcases the highlights from the Solutions Forum. Three videos of the full event are also available. Part 1 provides opening remarks, a personal caregiving story and the keynote address. In Part 2 you will hear from experts who were on the consensus committee who wrote the report, while Part 3 includes a panel of thought leaders who react to the report’s findings, recommendations, and next steps for a call to action. Read
This paper describes promising practices on how aging and disability agencies, Veterans Affairs Medical Centers, and Veteran Benefits Offices have forged partnerships to better support Veterans in community living. Read
This emerging innovations paper highlights examples of how progressive managed care plans are supporting family caregivers who are caring for plan members with long-term services and supports needs. This paper is the first ever to provide insights directly from managed care leaders about family caregiver supports. Read
This Spotlight describes the history and emergence of patient and family advisory councils (PFACs) in hospitals, and highlights how hospitals are engaging patients and families in PFACs and what engagement activities are being adopted. It also recommends how PFACs can be broadened to include the unique perspectives of family caregivers of older adults into quality improvement activities. Read
After Hospitalization describes strategies used in four highly ranked or significantly improved states—including Minnesota—to reduce the risk of long-term nursing home care after a hospitalization. The paper also includes a toolkit of resources that can help others learn more and potentially replicate these practices, as well as contact information for experts. Read
Caregiver support services can make a real difference in the daily lives of people with dementia and their family caregivers. This paper examines what is known about effective programs to support family caregivers, with a focus on evidence-based programs for family caregivers of persons living with dementia. Read
Redirecting more resources to provide Medicaid-funded home and community-based services (HCBS) instead of nursing facility services is cost-effective compared with nursing facilities. In addition, HCBS are more responsive to the preferences of older adults and people with disabilities to remain in their homes and communities, and have the potential to improve the quality of life of people receiving these critical services. Read
The paper provides concrete examples of how seven No Wrong Door Systems—sometimes called Aging and Disability Resource Centers—are promoting person- and family-centered practice. Read
Medicaid is a lifeline for millions of children and adults with disabilities and older people who depend on the program for health care and assistance with long-term services and supports (LTSS) such as toileting, bathing, and dressing. Medicaid is the nation’s largest publicly funded health and LTSS insurance program for people with low incomes. Read
This fact sheet looks at what LTSS encompasses, who provides that care, and lastly who are the major payers. Read
This is the first major research paper in this emerging field of managed long-term services and supports (LTSS) that addresses family caregivers’ needs. Family caregivers of people with self-care needs often make it possible for the members of managed care plans to live at home rather than in institutions. Read
Caregiving instructional videos aimed at preparing family caregivers perform a variety of medical/nursing tasks such as managing medications, giving injections, mobility, wound care and preparing special diets. Read
Using data from the Caregiving in the U.S. 2015 survey, this Spotlight highlights current information about the impacts of the dual responsibilities of employment and family caregiving. Read
Part of the Valuing the Invaluable series on the economic value of family caregiving, this report updates national and individual state estimates of the economic value of family caregiving using the most current data available. In 2013, about 40 million family caregivers in the U.S. provided an estimated 37 billion hours of care to an adult with limitations in daily activities. Read
Older people and adults with disabilities, particularly those with care needs, can benefit from care coordination. Care coordinators are typically nurses or social workers who can help with tasks such as monitoring chronic health conditions, connecting them to social supports, conducting assessments, and writing plans of care. Read
This report presents the findings from a case study of Connecticut. The study was conducted following the release of the 2014 State Long-Term Services and Supports Scorecard to understand factors that lead to improved performance on measures of long-term services and supports (LTSS) for older adults and people with physical disabilities. Read
Unnecessary and avoidable care transitions can result in adverse outcomes, especially among older adults and people with multiple chronic conditions. Read
This report presents the findings from a case study of Mississippi. The study was conducted following the release of the 2014 State Long-Term Services and Supports Scorecard to understand factors that lead to improved performance on measures of long-term services and supports (LTSS) for older adults and people with physical disabilities. Read
Access to Unemployment Insurance Benefits for Family Caregivers
While a growing number of states have unemployment insurance (UI) rules in place to accommodate workers who must leave their jobs to care for family members who are ill or have a disability, significant barriers remain for caregivers seeking UI benefits. Read
The Affordable Care Act (ACA) provides new but limited opportunities to promote or fund specialized transportation services for older people and adults with disabilities. Read
Providing care to people with cognitive or behavioral health conditions is doubly challenging. This report highlights results from a national survey of caregivers. Read
While states are making measureable progress in improving long term services and supports (LTSS), widespread disparities still exist across the country, with even top performing states requiring improvement. Further, the pace of change remains slow, threatening states’ ability to meet the needs of the aging population. How does your state rank? Read
Policies to support employed family caregivers who provide chronic care can benefit both employers and caregivers. Read
A new survey shows 1 in 5 family caregivers is a spouse. Efforts to reduce isolation and stress are needed to support spouses and their partners. Read
Family members provide the majority of long-term services and supports, but the supply of family caregivers is unlikely to keep pace with demand as the care gap widens. Read
Tight fiscal budgets and increasing demand for publicly funded long-term services and supports (LTSS) are putting pressure on states to transform their systems of care for older people and adults with disabilities. Many states are beginning to implement Affordable Care Act LTSS options that increase access to Medicaid home and community-based services, but non-Medicaid aging and disability funding has either decreased or remained flat in most states. What is your state doing? Read
Increasing numbers of states are transitioning their Medicaid long-term services and supports (LTSS) systems from fee-for-service models to managed care models, raising concerns among stakeholders that services will be disrupted and consumer choices diminished. See the findings. Read
Family caregiver assessment is critical for effective delivery of home- and community-based services, but the concept is not well understood in policy or practice. Read
Employment policies such as unpaid family leave, paid family leave and earned sick time can lessen the burden on working caregivers and reduce worker turnover. Read
The role of many family caregivers has dramatically expanded to include performing medical/nursing tasks once provided only in hospitals. Read