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The Public Policy Institute recognizes family caregivers are an essential part of the social, health, and economic fabric of the U.S. providing an economic value of $470 billion in unpaid contributions. As AARP celebrates caregivers in November and December, please see below for work PPI is doing to support family caregivers. 

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Featured Resources

Home Alone Alliance

Home Alone Alliance℠

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.

Families Caring for an Aging America: The Current Landscape and Opportunities for the Future

Navigating a Staircase

Millennials: The Emerging Generation of Family Caregivers

Recent Analysis

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

Portrait Of PPI Expert Susan Reinhard, AARP, Public Policy Institute

Blogs by Susan Reinhard

Susan Reinhard is senior vice president and director of AARP Public Policy Institute. Read her latest blogs on family caregiving, healthy living, nursing and more. Read Susan's Blogs

Family Caregiver Video Guide to Managing Medications

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

The Dual Pressures of Family Caregiving and Employment

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

Valuing the Invaluable 2015 Update: Undeniable Progress, but Big Gaps Remain

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

How Managed Long-Term Services and Supports is Providing Coordination

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

State Long-Term Services and Supports Scorecard: How One State Improved

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

Effective Transitions Between Care Settings

Unnecessary and avoidable care transitions can result in adverse outcomes, especially among older adults and people with multiple chronic conditions. Read

State Long-Term Services and Supports Scorecard: How One State Improved

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

Expanding Specialized Transportation: New Opportunities under the Affordable Care Act

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

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions 

Providing care to people with cognitive or behavioral health conditions is doubly challenging. This report highlights results from a national survey of caregivers. Read

Raising Expectations 2014: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

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

Transforming the Workforce to Provide Better Chronic Care: The Role of Nurse Care Managers

This series explores the evolution of primary care systems to better meet the needs of consumers with complex health conditions. It demonstrates that changes in the workforce are required to empower consumers to better manager their health. Read

Employed Family Caregivers Providing Complex Chronic Care

Policies to support employed family caregivers who provide chronic care can benefit both employers and caregivers. Read

Family Caregivers Providing Complex Chronic Care to Their Spouses

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

The Aging of the Boomers and the Growing Care Gap: a Look at Future Declines in the Availability of Family Caregivers

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

At the Crossroads: Providing Long-Term Services and Supports at a Time of High Demand and Fiscal Constraint

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

Consumer Choices and Continuity of Care in Managed Long-Term Services and Supports: Emerging Practices and Lessons

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

Listening to Family Caregivers: the Need to Include Family Caregiver Assessment in Medicaid Home- and Community-Based Service Waiver Programs

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

Keeping Up With the Times: Supporting Family Caregivers With Workplace Leave Policies

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

Home Alone: Family Caregivers Providing Complex Chronic Care

The role of many family caregivers has dramatically expanded to include performing medical/nursing tasks once provided only in hospitals. Read

ReACT Employer Resource Guide

Four steps for supporting employees with caregiving responsibilities. Read

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