American Association of Caregiving Youth More than a million children under 18 care for a parent, grandparent or other relative with a disability or illness. AACY’s goal is to increase awareness and provide support services for youth caregivers and their families by connecting them with healthcare, education and community resources. AACY says they are the only organization in the U.S. dedicated solely to addressing caregiving youth issues.
The National Alliance for Caregiving issued a 2018 report: From Insight to Advocacy: Addressing Family Caregiving as a National Public Health Issue. The report describes family caregiving and the major caregiving issues affecting public health, including actions that can be taken specifically by state and local coalitions, health systems, and policymakers. It also cites common data sources, identifies barriers to providing care within the aging network, and offers strategies on what caregiving advocates can do to get engaged.
Atlas of Caregiving: This project of the Robert Wood Johnson Foundation, explores the everyday practice of family caregiving; their research applies new methods to collecting, analyzing, and presenting detailed contextual data to address caregiving questions. Examining what the data implies, and sharing insights widely, on how to better inform caregivers, and the policies, products, programs, and services intended to support them? What can, and should, communities, employers, entrepreneurs, health and policy professionals, or technologists do differently, or the same?
Caring Across Generations Preparing for the Elder Boom — white paper on solutions for long term services and supports: how do we better provide long-term services and supports (LTSS) for our aging population and people with disabilities? This white paper outlines the gaps in coverage and lack of sufficient care resources for older Americans, people with disabilities, the family members that support them, and the care workforce necessary to create family-centered caregiving system built for the 21st century.
Family Caregiver Council Resources: The Family Caregiver Council, a coalition of 13 national family caregiver organizations and other experts launched a new set of resources designed to help the estimated 44 million family caregivers in the U.S. learn more about issues ranging from housing and transportation to hiring outside help. The goal is to provide a one-stop website that can help caregivers learn more about specific family caregiving issues they may be experiencing, how to better take care of themselves as well as their loved ones.
Valuing the Invaluable: 2015 Update: This AARP Public Policy Institute report on the price of unpaid family caregiving finds that in 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009.
Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, United Hospital Fund and AARP Public Policy Institute
This new report documents demanding challenges, including high levels of self-reported depression among family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions.
“Family Caregivers are Wired for Health,” Pew Internet & American Life Project (June 2013)
Nearly 4 in 10 (39 percent) of U.S. adults are caring for someone with a significant health condition, including caring for many older adults with multiple chronic conditions. As this study found, the Internet plays an increasingly important role in helping family caregivers manage care, get information, and find support.