Family Caregiving Research

Aging in the United States. 2019 Population Reference Bureau Fact Sheet presents trends and disparities in the 65-plus population and investigates the ways in which the Boomer population is reshaping aging in America.
The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis. 2020 report outlines the influence of disability diagnosis and socioeconomic status on the health of the mother.
Caregiving for Family and Friends — A Public Health Issue. 2019 brief from the CDC includes caregiver characteristics, health, and future caregiver projections.
Caregiving in the U.S.: 2020 Report. Most recent research on family caregiving from AARP and the National Alliance on Caregiving.
NEW!!! Caring for the Caregiver: Incentivizing Medical Providers to Include Caregivers as Part of the Treatment Team. National Alliance for Caregiving White Paper discusses Medicare incentives that could help health systems/providers offer more vigorous support to family caregivers. Paper also discusses barriers that slow down systemic progress.
The Circle of Care Guidebook for Caregivers of Children with Rate and/or Serious Illnesses. Guidebook from a partnership between Global Genes and the National Alliance for Caregiving (NAC). The first resource of its kind, it discusses the challenges of caregiving for children with rare and/or serious illnesses, equity issues, obtaining an accurate diagnosis and information, managing health and medical care, and much much more.
The Coronavirus Pandemic Highlights Why Family Caregivers Need to Be Integrated into the Health Care Team and Shows Us How to Make it Happen. 2121 Rand Insights authors describe why, considering the pandemic, it is more critical than ever to integrate family caregivers into patient health care teams; they also highlight several solutions for accomplishing this goal.
Dementia: The Impact of Caregiving in the Workplace. Article from the Wisconsin Department of Health Services discusses the increased costs of employee caregiving to to companies and the significant benefits incrued when companies support family caregivers.
Families Caring for an Aging America. 2016 report on family caregiving of older adults from the National Academies of Sciences, Engineering, and Medicine.
Family Caregivers Cost Survey: What They Spend & What They Sacrifice. This 2016 AARP research report outlines major out-of-pocket caregiving costs including household, medical, personal care, and paid help expenses. See Surprising Out-of-Pocket Costs for Caregivers for 2019 update.
Family Caregiving During the COVID-19 Pandemic. 2021 Gerontological Society of America research report on increased caregiver duties, burdens, and resulting adverse health, psychosocial, and financial outcomes related to the pandemic. 
Family Caregiving in Illinois: A Survey of Registered Voters Age 40 and Older. 2019 AARP report on family caregiving in Illinois. Includes key findings, caregiver characteristics, community services, and implications.
Family-Provided Health Care for Children With Special Health Care Needs. 2017 report from the American Academy of Pediatrics includes hours and costs of skilled care and lost work hours, conditions requiring care, and policy suggestions.
In Support of Family Caregivers: A Snapshot of Five States. 2019 from the Milbank Memorial Fund and the Hartford Foundation spotlights how Washington, Hawaii, Maine, Minnesota, and Tennessee have integrated family caregiving into their service delivery systems.
NEW!!! Informal Caregivers Provide Considerable Front-Line Support in Residential Facilities and Nursing Homes. Health Affairs study published January 4, 2022. (Access limited to complete study. See this McKnight Senior Living article for additional details.)
Lessons from the Workplace: Caregiving during COVID-19. National Alliance for Caregiving Report delves into the caregiving of one Fortune 500 employee, using her experience to highlight the mismatch between employer benefits and employee caregiving needs, communication gaps between human resources and employees, the need for a cultural shift regarding employer/family responsibilities, and the American reliance on employers to support family caregivers.
Millennials: The Emerging Generation of Family Caregivers. 2018 AARP Public Polity Institute report discusses the background, experiences, and challenges of Millennial family caregivers.
A National Spotlight on Caregiving. Highlights of a 2020 report by the National Academies of Science, Medicine, and Engineering on data from the National Study of Caregiving (NSOC).
Neglected Needs of Family Caregivers … and What They Need Now …. Research from interviews of family caregivers in Alberta, Canada. Learn more about what they need from health care professionals. How do their expressed needs compare to yours?
NEW!!! RAISE Act State Policy Roadmap for Family Caregivers:  Financial and Workplace Security for Family Caregivers. From the National Academy for State Health Policy, document outlines the need for supporting family caregiver financial security, state challenges, state strategies and promising practices, and lessons learned.
RAISE Family Caregiver Act Initial Report to Congress. Report includes a review of the current state of family caregiving and recommendations for how government at all levels and the private sector can partner to better Recognize, Assist, Include, Support, and Engage family caregivers.
Rescue Plan Help for Caregivers Is a First Step. 2021 Rand Corporation article summarizes economic value of family caregiving in the U.S., the challenges and costs faced by family caregivers (before, after, and during the pandemic), and the need for long-term caregiver protections.
The U.S. Carer Well-Being Index: Who Cares for Caregivers? Perspectives on COVID-19. Collaborative report from international carer (caregiving) organizations looks at the ways in which the COVID-19 pandemic has affected family carers in the U.S.
Valuing the Invaluable: 2019 Update. AARP Public Policy Institute report updates the economic value of family caregiving, caregiving trends, policy and practice changes across the country, and recommendations policy changes based on updated data.