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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Caregiving Initiative
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
Solutions Forum
Families Caring for an Aging America: The Current Landscape and Opportunities for the Future
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
Recent Analysis
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
Senior Vice President Susan Reinhard blogs about recent reports and topics such as caregiving and nursing. Read Susan's Blog
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
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
Blog Posts
- What’s Different About Family Caregiving Today?
- Paying for Home- and Community-Based Services: Lessons From Oregon
- Adult Day Services: A Model of Person- and Family-Centered Care
- States’ Role in Limiting Inappropriate Use of Antipsychotic Meds in Nursing Homes
- Family Caregivers Need Support; Are States Meeting the Need?
- Removing Barriers to Financial Independence for People With Disabilities
- States Move to Support Working Family Caregivers
- Family Caregiving: There’s Nothing Informal About It
- Improving the Performance of State Systems of Long-Term Services and Supports
- Aging and Disability Resource Centers: Scorecard Highlights the Need for Information and Access to Services
- Time for States to Get Moving on Supporting Long-Term Care
- There’s No Place Like Home – But How Do You Define It?
- The New Federal Rule on Home- and Community-Based Services: All Eyes on the States
- Setting the Pace for Identifying Family Caregiver Needs in Home- and Community-Based Services
- Easing the Burdens on Family Caregivers: Are We Listening to Their Needs?
- Modernizing Medicaid: Putting Home- and Community-Based Services on Equal Footing with Nursing Homes
- The Growing Problem of Elder Abuse: A Discussion with Assistant Secretary Kathy Greenlee
- Giving Family Caregivers the Respect and Support They Deserve
- The Family Caregiver’s Job Description: Add Nursing Care to the List
- The Future Supply of Family Caregivers
- Do the Rich Benefit from Medicaid?
- Home- and Community-Based Services: The Right Place and the Right Time
- Transition to Medicaid Managed Long-Term Services and Supports: How Is It Going?
- Health Homes: Who Knew?
- Just How Valuable Is Family Caregiving?