Issues: Long-Term Care and Family Caregiving

Caregiving: AARP Public Policy Institute


The AARP Public Policy Institute focuses on issues of critical importance as we age. Below we highlight research, analysis, background and commentary on Caregiving.


Coming In 2017

Multicultural Caregiving and Caregiver Interventions:  Where we have been, where we should
go next

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.


Caregiving Initiatives 

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 AmericaThe 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


Women and Long-Term Services and Supports

Women face major challenges as they seek to live with independence and dignity as they age. With longer average life spans and higher rates of disability and chronic health problems than men, most women will need long-term services and supports (LTSS) in their lifetimes. Read


Breaking Stereotypes: Spotlight on Male Family Caregivers

40 percent of family caregivers of adults are men—which equates to 16 million male family caregivers in the United States. Using data from the Caregiving in the U.S. 2015 survey, this Spotlight highlights male family caregivers, providing current information about the experiences and challenges facing them today. 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. No Wrong Door Systems involve an array of organizations including Area Agencies on Aging, Centers for Independent Living, and state agencies such as Medicaid agencies and state units on aging. Older adults, people with disabilities, and their families can access services through these agencies in a variety of ways including in person, by telephone, and online. Read


Medicaid: A Last Resort for People Needing Long-Term Services and Supports 

Long-term services and supports are costly and can wipe out life savings. Medicaid is a critical safety net when long-term disabilities occur and personal resources to pay for assistance run out. Read


Impact of Block Grants and Per Capita Caps on Medicaid Enrollees: State Fact Sheets

Changing Medicaid to block grant or per capita cap model could end Medicaid’s guaranteed access to care and shift costs over time to both states and to Medicaid enrollees. What would be the impact on Medicaid in your state? Read


Long-Term Services and Supports

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


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


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


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

Nearly a third of people turning age 65 will need to rely on Medicaid assistance to pay for long-term services and supports. Read


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Susan's Blog

Senior Vice President Susan Reinhard blogs about recent reports and topics such as caregiving and nursing. Read


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