The AARP Public Policy Institute (PPI) recognizes that family caregivers are an essential part of the social, health, and economic fabric of the United States—providing an economic value of $470 billion in unpaid contributions. Read on to learn about the work PPI is doing to support family caregivers. 

Caregiving in the United States 2020

Just released by The National Alliance for Caregiving (NAC) and AARP: Caregiving in the U.S. 2020.  This 2020 update reveals an increase in the number of family caregivers in the United States of 9.5 million from 2015 to 2020.

Family caregivers now encompass more than one in five Americans. The study also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with an aging population, there is an opportunity for the public and private sectors to work together to develop solutions to support family caregivers and those under their care.  Read

Recognition of Family Caregivers in Managed Long-Term Services and Supports

Based on a study of managed long-term services and supports (MLTSS) programs, this report examines provisions in MLTSS contracts that are important for the support of family caregivers. The study comprised the review of 31 MLTSS programs for older adults and adults with physical disabilities in 23 states in 2019. Read

Fast-tracking Approval for Publicly Funded LTSS: Presumptive Eligibility 

Part of the Long-Term Services & Supports State Scorecard Promising Practices, this paper examines Presumptive Eligibility programs in five states -- Michigan, Ohio, Rhode Island, Vermont, and Washington – comparing key features and making recommendations for effective programs that increase access to Long-Term Services and Supports. Read

Valuing the Invaluable 2019 Update: Charting a Path Forward 

Part of a series of papers 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 2017, about 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion. Read

Long-Term Services and Supports

In 2018, about 14 million adults of all ages needed long-term services and supports (LTSS). This fact sheet takes a closer look at what LTSS encompass, who needs these services, who provides care and where it’s provided, what paid LTSS cost, and who pays for LTSS. Read

Emerging Innovations: Mobility Managers

Mobility managers are transportation coordinators for older adults, people with disabilities, veterans, and other members of the riding public. This paper highlights who mobility managers are and what they do—and why they are important now and in the future. It highlights emerging innovations from five case studies. Read

Home- and Community-Based Services Beyond Medicaid: How State-Funded Programs Help Low-Income Adults with Care Needs Live at Home

This paper highlights how state-funded home- and community-based services programs in 9 states are supporting low-income older adults and/or people with physical disabilities and their family caregivers to live with maximum independence at home. The paper also features a state’s emerging innovation to provide tailored services and supports for “near poor” older adults and their family caregivers.  Read

Older Americans Act

Older Americans Act funding is failing to keep up with inflation and America’s growing older population. Funding supports critical services including meals to help millions of older Americans age in place.  Read

Breaking New Ground: Supporting Employed Family Caregivers with Workplace Leave Policies

Trends suggest that in the coming years an increasing share of family caregivers will be in the labor force, facing the dual demands of employment and caregiving responsibilities for aging relatives. Read

Across the States 2018: Profiles of Long-Term Services and Supports 

Across the States 2018: Profiles of Long-Term Services and Supports is the 10th edition of the AARP Public Policy Institute’s state long-term services and supports (LTSS) reference report. Read

Disrupting the Marketplace: The State of Private Long-Term Care Insurance, 2018 Update

The long-term care insurance (LTCI) industry is undergoing a transformation and is responding to consumer concerns about the high cost and complexity of LTCI by developing alternative products that are more affordable and flexible to meet the coverage needs consumers.  This report includes facts and figures on LTCI and information on the emerging market for short-term care products. Read

Millennials: The Emerging Generation of Family Caregivers

Millennials comprise about 1 in 4 family caregivers, and are the most diverse caregiving generation. This report is the first to look comprehensively at Millennials in the caregiving context. Read. 

Podcast: Millennial Caregivers

 “Prepare to Care” podcast, host Marie-Pierre spoke to Wendy Fox-Grage, Senior Policy Advisor with AARP’s Public Policy Institute, and Isabel Longoria from the AARP Houston office. Both share their insights and favorite resources as a millennial caregiver. Learn More

Taking It to the Next Level:  Using Innovative Strategies to Expand Options for Self-Direction

Evidence shows that self-direction is an effective way to provide long-term services and supports (LTSS).  Part of a series of innovative and promising practices reports to the LTSS State Scorecard, this paper describes how four states used innovative strategies to develop and expand self-directed services programs, coordinate and personalize service options, promote stakeholder engagement and outreach, and implement training programs to expand opportunities for individuals to self-direct their LTSS. Read

Giving States A Tool To Improve Long-Term Services and Supports

AARP’s Long-Term Services and Supports (LTSS) State Scorecard aims to pick up the pace of improving LTSS by providing comparable state data to benchmark performance, measure progress, identify areas for improvement, and improve lives. Read

No Wrong Door: Supporting Community Living for Veterans

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

Emerging Innovations in Managed Long-Term Services and Supports for Family Caregivers

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

Patient and Family Advisory Councils in Hospitals: Building Partnerships to Improve Care

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

Long-Term Services and Supports Scorecard Promising Practices Paper: State Strategies to Reduce the Risk of Long-Term Nursing Home Care

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

From Research to Standard Practice: Advancing Proven Programs to Support Family Caregivers of Persons Living with Dementia

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

Stretching the Medicaid Dollar: Home and Community-Based Services Are a Cost-Effective Approach to Providing Long-Term Services and Supports

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

No Wrong Door: Person- and Family-Centered Practices in Long-Term Services and Supports

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: A Program of Last Resort for People Who Need Long-Term Services and Supports

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

Long-Term Support and Services Fact Sheet

This fact sheet looks at what LTSS encompasses, who provides that care, and lastly who are the major payers. Read

Family Caregivers & Managed Long-Term Services and Supports

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