Caregiving Research Library
Find the latest research references and current articles for your advocacy journey. Do you need facts and figures? We have them!
Developing a Unified Strategy to Support Family Caregivers →
From Momentum to Movement represents the first iteration of a living document and compilation of resources to help guide advocates in developing statewide caregiving strategies that address community-level needs. This report presents a strategic process to foster the development of actionable goals in new state plans. It also includes core policy recommendations in person-centered domains intended to coordinate alignment across key global, national, and state-level priorities and to strengthen movement toward a robust, unified caregiving strategy for caregivers across the lifespan.
Caregiving in the US 2020 →
The National Alliance for Caregiving (NAC) and AARP present Caregiving in the U.S. 2020! This report is the most recent update to our trended research series, Caregiving in the U.S., conducted roughly every five years. The 2020 update reveals an increase in the number of family caregivers in the United States of 9.5 million from 2015 to 2020. Family caregivers now encompass more than one in five Americans. The study also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with an aging population, there is an opportunity for the public and private sectors to work together to develop solutions to support family caregivers and those under their care.
Families Caring for an Aging America 2016 →
Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
Caregiving During COVID
Caregivers in Crisis: Caregiving in the Time of COVID-19 →
The Rosalynn Carter Institute for Caregiving (RCI) undertook a study of caregiving in the time of COVID19 with the support of the Bristol Myers Squibb Foundation. The impetus for this study was a steady stream of informal reports from the caregivers served by RCI regarding the increase in their stress. While other studies have explored the conditions faced by caregivers and the impacts of caregiving, the purpose of this study was to understand the direct experience of caregivers, particularly changes in and causes of stress, since the beginning of the COVID-19 pandemic.
Recalibrating for Caregivers: Recognizing the Public Health Challenge →
This paper considers what will be needed to make the kinds of system-level changes to improve the health, strength, and resiliency of informal family caregivers. It outlines the current state of affairs for caregivers and proposes what is needed to move forward, acknowledging that there is not much bold, disruptive thinking currently taking place around how to best support caregivers. In fact, one of the clearest lessons to date from the COVID-19 pandemic is that even the most fundamental information, such as the number of caregivers in the United States, can change at a moment’s notice. This work presents a series of questions and pursuits for allies of all sorts—employers, caregiver advocates, policymakers, payers, and health care providers—to join us in the work of exploring solutions.
Effects of COVID-19 on Family Caregivers A Community Survey from the University of Pittsburgh →
A team of researchers from the National Rehabilitation Research and Training Center on Family Support and the University Center for Social and Urban Research at the University of Pittsburgh recently conducted a survey to identify the specific effects of the pandemic on families and family caregivers. The survey, which was conducted between April 15 and May 27, 2020, assessed the impacts of the pandemic on employment, financial well-being, social interactions, health behaviors, and physical and mental health. This report summarizes the results, specifically identifying differences in how the pandemic uniquely affected family caregivers compared to non-caregivers.
Dementia and Brain Health
Alzheimer's Disease Facts and Figures 2021 →
2021 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common cause of dementia.
Better Brain Health through Equity: Addressing Health and Economic Disparities in Dementia for African Americans and Latinos →
The 'Better Brain Health through Equity: Addressing Health and Economic Disparities in Dementia for African Americans and Latinos' report centers around two overarching themes: (1) Strengthening the infrastructure among health-care, long-term care, and community-based organizations to achieve greater health equity for people living with dementia and their caregivers and (2) Expanding dementia-friendly networks and workplaces in racially and ethnically diverse communities.
National Plan to Address Alzheimer’s Disease, 2020 Update →
The National Plan, originated in 2012, establishes five ambitious goals to both prevent future cases of Alzheimer's disease and related dementias (AD/ADRD), and to better meet the needs of the millions of American families currently facing this disease.
The social and economic burden of frontotemporal degeneration (FTD) →
Quantifies the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD).
Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward →
Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward examines the complex body of evidence on dementia care and informs decision making about which interventions are ready to be broadly disseminated and implemented. It also offers a blueprint to guide future research using rigorous, cutting-edge methods that are inclusive, equitable, and yield critical information for real-world implementation, toward the ultimate goal of better supporting persons living with dementia and their care partners and caregivers in living as well as possible.
Preventing Cognitive Decline and Dementia: A Way Forward →
Preventing Cognitive Decline and Dementia: A Way Forward assesses the current state of knowledge on interventions to prevent cognitive decline and dementia, and informs future research in this area. This report provides recommendations of appropriate content for inclusion in public health messages from the National Institute on Aging.
Place and Brain Health Equity: Understanding the County-Level Impacts of Alzheimer’s →
This report found that deep social inequities exist in counties highly impacted by Alzheimer's among Latinos and Blacks.
Federal Health IT Strategic Plan_2020_2025 →
Federal, state, and local governments, along with the private sector, have worked together to help digitize health information and healthcare. Yet, much work remains to ensure patients and caregivers have access to valuable, usable information. With this Plan, the federal government demonstrates its ongoing coordinated focus on the interoperability of EHI and the reduction of provider burden. It emphasizes product and price transparency, allowing individuals to select the technology they wish to use to access and control their information, while opening up entirely new business models for the health app economy.