United Way Caregivers Coalition Caregivers Toolbox
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Caregiving Research
AARP Family Caregiving Survey: Caregiver’s Reflections on Changing Roles (2017) AARP conducted a survey among caregivers and care recipients to examine the emotions they experience as well as how their relationship with their loved one may have changed because of caregiving. This survey was conducted online using NORC’s nationally representative panel, AmeriSpeak. One thousand and eighty-one caregivers were included as well as 479 care recipients. The data was collected from August 31 through September 19, 2017. The data for both caregivers and care recipients were adjusted to correct for potential non-response biases.
Attribution: AARP
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Best Practices in Workplace Eldercare – Full Report (2012) The Best Practices in Workplace Eldercare Study was conducted to identify current trends and innovations in workplace policies and practices that support employees with eldercare responsibilities. Sampling for companies to participate in the study, began with an invitation to ReACT members, and those who volunteered to talk about their eldercare programs were interviewed by phone using a semi-structured interview that explored the history of the program, the program elements, how it is marketed, the utilization rates, how the program is evaluated and the benefits to the employer.
Attribution: Conducted by The National Alliance for Caregiving for ReACT, supported by The Alzheimer’s Immunotherapy Program of Janssen Alzheimer Immunotherapy, and Pfizer Inc.
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Cancer Caregiving in the U.S. (2016) This report analyzes the experiences of providing unpaid, informal care6 in the United States to a relative or friend diagnosed with cancer, with the goal of identifying targeted and diverse approaches (programmatic and policy) to enhance the lives of cancer caregivers and, ultimately, the lives of their care recipients.
Attribution: The National Alliance for Caregiving in partnership with the National Cancer Institute and the Cancer Support Community
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Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity (2011) Nearly one-third of working caregivers miss at least six work days each year. This article discusses the results from a Pfizer-ReACT/Gallup poll which are based on telephone interviews conducted Dec. 28, 2010-Jan. 9, 2011, with a sample of 2,805 adults, aged 18 and older, who self-identified as caregivers and were working at least 15 hours per week, living in all 50 U.S. states and the District of Columbia. Respondents had previously self-identified as caregivers in Gallup Daily tracking surveys conducted throughout 2010 and were re-contacted to participate in this survey.
Attribution: Article by Dan Witters, Gallop poll conducted by Pfizer and ReACT
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Caregiving in Rural America (2006) This report provides a summary of the data from the perspective of the rural caregiver and rural care recipient. It is summary of findings from the 2004 survey related to caregiving in rural America, but is also a statement of the need for additional information and action.
Attribution: Easter Seals Disability Services and the National Alliance for Caregiving
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Caregiving in the US – Companion Report Caring for Children with Special Needs(2009) This is the second of three companion reports to the full report of the Caregiving in the U.S. 2009 study. This companion report focuses on 187 family caregivers who provide care to an adult age 18 to 49—named "caregivers of younger adults"— and includes comparisons to 173 caregivers of children with special needs and 1,397 caregivers of older adults, when significantly different. All family caregivers were interviewed by telephone between March 5 and June 17, 2009.
Attribution: The National Alliance for Caregiving, in collaboration with AARP, and with funding from MetLife Foundation
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Caregiving in the US – Companion Report Caring for Young Adults Age 18-49 (2009) This is the first of three companion reports to the full report of the Caregiving in the U.S. 2009 study. This companion report focuses on 173 people who are providing care to a child under the age of 18, and includes comparisons to 1,296 caregivers of adults when significantly different. The other companion reports provide detail on caregivers of younger adults (age 18 to 49) and caregivers of older adults (age 50+). All caregivers were interviewed by telephone between March 5 and June 17, 2009.
Attribution: National Alliance for Caregiving, in collaboration with AARP, with funding from MetLife Foundation
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Caregiving in the U.S. 2015 (2015) Caregiving in the U.S. 2015 is a joint research study between the National Alliance for Caregiving and AARP, providing new insights into higher-hour caregivers (at least 21 hours of care a week), caregivers ages 75 and older, multicultural caregivers (including African American/black, Hispanic/Latino, and Asian American/Pacific Islander populations), and the challenges facing caregivers in the workplace.
Attribution: National Alliance for Caregiving and AARP
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Caregiver Profile: African American/Black Caregivers (2015) This profile summarizes data from the Caregiving in the U.S. 2015 research study.
Attribution: National Alliance for Caregiving and AARP
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Caregiver Profile: Asian American Pacific Islander Caregivers (2015) This profile summarizes data from the Caregiving in the U.S. 2015 research study.
Attribution: National Alliance for Caregiving, in partnership with the National Cancer Institute, and the Cancer Support Community
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Caregiver Profile: Hispanic/Latino Caregivers (2015) This profile summarizes data from the Caregiving in the U.S. 2015 research study
Attribution: National Alliance for Caregiving and AARP
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Caregivers of Veterans - Serving on the Homefront (2010) This study combines qualitative results from a series of focus groups and in-depth telephone interviews with quantitative data from an online survey. Together, the three-part study provides information for policymakers, the Department of Veterans Affairs (VA), community agencies, nonprofit organizations, and business and industry, to better target programs to the needs of this special group of caregivers.
Attribution: National Alliance for Caregiving, funded by United Health Foundation
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Caregivers of Vets Continue to Face Challenges, Study (2014)
This study found that there are 5.5 million military caregivers in America, and that 1.1 million of these caregiver’s support Veterans from post-9/11 wars. These caregiving efforts save the U.S. healthcare system an estimated $3 billion annually.
Attribution: RAND Health, in coordination with the RAND National Security Research Division, funded by Caring for Military Families: The Elizabeth Dole Foundation.
Information: Click here to see full report
Click here to see article in USA Today
Click here to see Op-Ed in USA Today
Catalyzing Technology to Support Family Caregiving Report, Full Report (2014) Until now, technology has made only modest contributions to supporting caregivers. Can technology play a more meaningful role in helping caregivers? And how we can accelerate innovation in developing new applications to support caregivers? In April 2014, an expert roundtable convened to explore these questions. This report provides a starting point for innovators who want to better understand a caregiver’s needs.
Attribution: National Alliance for Caregiving
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Cost of Care 2012, Survey (2015)
This survey and analysis is intended to help with finding costs for home care providers, adult day health care facilities, assisted living facilities, and nursing homes.
Attribution: Genworth
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Dementia Caregiving in the U.S. (2017) This report analyzes the experiences of providing unpaid care in the United States to a relative or friend diagnosed with Alzheimer’s disease, dementia, or other mental confusion, with the goals of both understanding the experiences of people caring for someone with dementia and identifying approaches to enhance and support this unique caregiving experience. The analyses were drawn from the nationally representative study Caregiving in the U.S. 2015 and examines caregivers who indicated that their care recipient had Alzheimer’s disease, dementia, or some other type of mental confusion as either a primary or secondary reason for providing care.
Attribution: National Alliance for Caregiving, in partnership with Alzheimer’s Association
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Dementia Caregiving in the U.S. – Research Recommendations (2017) This report analyzes data from the nationally representative study Caregiving in the U.S. 2015, and examines caregivers who indicate that their care recipient had Alzheimer’s disease, dementia, or some other type of mental confusion, as either a primary or secondary reason for providing care.
Attribution: National Alliance for Caregiving, in partnership with Alzheimer’s Association, and a pre-summit activity with Research Summit on Dementia Care
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Diabetes Caregiving Study (2010) The data from several focus groups was used to develop the national diabetes caregiver survey, which was implemented in April 2009. This report details what was learned and attempts to provide information about opportunities to address the unmet needs of diabetes caregivers.
Attribution: The Hormone Foundation, in collaboration with the National Alliance for Caregiving, and with funding from Eli Lilly and Company.
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e-Connected Family Caregiver: Bringing Caregiving into the 21st Century, Full Report (2011) This report describes the results of a study conducted to examine family caregivers’ receptivity to technology. In particular, the study assessed how helpful 12 technologies would be in supporting caregivers or helping them provide care. These 12 technologies can be viewed as characteristic of the types of technologies that might be attractive to technology‑using family caregivers. The study also delved into barriers to the use of technology, factors influencing use of technology, and trusted sources of information about technology.
Attribution: National Alliance for Caregiving, funded by United Healthcare
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Embracing Carers International Survey (2017) Carers provide unpaid assistance to someone in need and play a critical role in the lives of those patients. Yet carers’ needs for resources and support that focus on improving their own health and well-being are often overlooked. The Embracing Carers™ International Survey questioned 3,516 unpaid carers to uncover the challenges they face due to giving their time as a carer. Results of this survey highlight the impact that caring for others has on carers’ health, finances, employment and emotional well-being.
Attribution: Caregiver Action Network, Carers Australia, Carers UK, Carers Worldwide, Eurocarers, IACO, NAC, and Shanghai Roots & Shoots
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Emerging Innovations in Managed Long-Term Services and Supports for Family Caregivers (2017) 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 (LTSS) needs. Family caregivers can include relatives, partners, neighbors, and friends who provide support and assistance to the member. The purpose of this paper is for plan administrators, policy makers, and community-based organizations to learn from each other and to adopt these practices to better care for members and their family caregivers.
Attrition: AARP Foundation & AARP Public Policy Institute, The Common Wealth Fund, and The Scan Foundation
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Evercare/National Alliance for Caregiving Survey of The Economic Downturn and Its Impact on Family Caregiving (2009) This study looks at some specific implications of how the economic downturn was affecting family caregivers and their loved ones. This survey acknowledges that family caregivers are especially vulnerable in these uncertain economic times, as they struggle to maintain their own financial stability, as well as continue to provide quality care to their loved one.
Attribution: The National Alliance for Caregiving and Evercare
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Family Caregiving and Out-of-pocket Costs (2016) The purpose of this study was to explore the out-of-pocket costs of caregiving and the financial strain on the family caregiver. This report estimates the monetary costs of caring for an adult with care needs by quantifying the out-of-pocket costs family caregivers are incurring. In addition, this study explores other financial and personal strains.
Attribution: AARP
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From Plan to Practice: Implementing the National Alzheimer’s Plan in Your State (2014)This report offers three case studies from states at various stages of developing their state plans. Minnesota’s ACT on Alzheimer’s initiative began in 2011, and has been successful in uniting the local Alzheimer’s disease community. Indiana’s plan, released in 2013, began as a community effort later supported by the state legislature and policy makers. Rhode Island, which also implemented a plan in 2013, is experiencing a transition in executive leadership and seeking new champions among policy makers to continue the plan’s successes.
Attribution: National Alliance for Caregiving and Alzheimer’s Association of America
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Full Alzheimer’s Caregiver’s Healthcare Costs Increase as Person with Dementia Declines (2011) Many studies have shown that the health of family caregivers can be adversely affected, especially as their caregiving continues and becomes more intense. This study looked at Alzheimer’s caregivers in the REACH 1 project (Resources for Enhancing Alzheimer’s Caregiver Health) to see if their health use was different from non-caregivers and, if so, how much more that care was estimated to cost. The purpose of this study was also to examine the use of formal health care services, in a large sample of AD caregivers, who were providing care for moderately to severely impaired AD patients at home.
Attribution: National Alliance for Caregiving and Alzheimer’s Immunotherapy Program
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Improving Care for Populations Disproportionally Affected by Alzheimer's Disease and Related Dementias (2013)
This report is from the special Task Force on Special Populations as part of the Health and Human Services' national plan to address Alzheimer's Disease. The report identifies commonality in issues faced by three populations: 1) people with younger-onset dementia, 2) racial and ethnic minorities, and 3) Down Syndrome and other intellectual disabilities, and summarizes 21 recommendations for further exploration.
Attribution: US Department of Health and Human Services
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MetLife Study of Caregiving Costs to Working Caregivers – Double Jeopardy for Baby Boomers Caring for Their Parents – Full Report (2011) The study analyzes data from the 2008 panel of the National Health and Retirement Study (HRS), combined with estimates, to determine the extent to which older adult children provide care to their parents, the roles gender and work play in that caregiving, and the potential cost to the caregiver in lost wages and future retirement income because of their support.
Attribution: The MetLife Mature Market Institute, in partnership with the National Alliance for Caregiving, and the Center for Long Term Care Research and Policy: New York Medical College
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MetLife Study of Working Caregivers and Employer Health Care Costs (2010) This study focuses on how caregiving, employer health costs, and employer-sponsored wellness benefits intersect. It reports on a case-study analysis of anonymous aggregate responses from 17,097 U.S. employees of a major multi-national manufacturing corporation who completed health risk assessment (HRA) questionnaires.
Attribution: The MetLife Mature Market Institute and the National Alliance for Caregiving, partnered with the University of Pittsburgh Institute on Aging
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Miles Away: The MetLife Study of Long-Distance Caregiving (2004) The purpose of this study was to undertake a survey of long-distance caregivers to examine these challenges. A sample of 1,130 long-distance care providers participated in an online survey conducted by Zogby International, an international polling and market research firm.
Attribution: MetLife Mature Market Institute, findings from a national study by the National Alliance for Caregiving with Zogby International
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Multiple Sclerosis Caregiving Study (2012) An in-depth study of family caregivers caring for loved ones with MS. Specific objectives of this study included the following: Collected demographic, psychographic and attitudinal data about people engaged in caring at home for someone with MS; Investigated how the changing symptoms relating to cognition, mood changes, and incontinence impact caregiving and caregivers; Explored the intersection of technology and care for someone with MS; Examined the triggering events for moving into a long-term care facility and better understand what resources or tools could help family caregivers keep their care recipient with MS in the home longer; and Understand the role of men as the primary caregiver to MS care recipients.
Attribution: National Alliance for Caregiving, supported by Sanofi US, and partnered with the Boomer Project of the Southeastern Institute of Research
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On Pins & Needles – Caregivers of Adults with Mental Illness (2016)
This report outlines findings from the research study On Pins and Needles: Caregivers of Adults with Mental Illness. This is a study of 1,601 caregivers (ages 18 or older) who provide care to an adult with serious-to-moderate emotional or mental health issues, from data collected in September 2015. The purpose of this study is to describe the experiences and challenges of this targeted subset of caregivers. While much research on mental illness has been done from the perspective of the person with mental illness (the care recipient), as well as mental health care providers, this study aims to fill the gap in understanding from the perspective of a key piece of the care team – the unpaid caregiver.
Attribution: National Alliance for Caregiving, in partnership with Mental Health American & National Alliance on Mental Illness
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Predictors of Caregiver Burden in Caregivers of Individuals with Dementia (2011) This article is a report on a study of the multidimensional predictors of caregiver burden in caregivers of individuals with dementia using nationally representative data. Data for this secondary analysis was provided by the National Alliance for Caregiving and AARP. The data was collected through a telephone survey of randomly selected adults in seven states in 2003. Impaired function in care-recipients predicts caregiver burden, and interacts with demographical- and caregiving-related factors. Thus, it will be beneficial to both care-recipients and caregivers to target nursing interventions and community services to improve the functional abilities of individuals with dementia.
Attribution: JAN (Journal of Advanced Nursing)
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What Made You Think Mom Had Alzheimer’s? (2011) This report describes the results of a study conducted to examine the impact of caring for a family member with Alzheimer’s or dementia, on unpaid caregivers’ daily lives, and psychological outlook. In particular, a goal of the study was to determine whether there are any positive outcomes from providing care to someone with this type of condition.
Attribution: National Alliance for Caregiving, funded by Pfizer and National Alliance for Caregiving
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The Journey for Caregiving: Honor, Responsibility, & Financial Complexity(2017) This research study examines the duties, sacrifices and rewards of caregiving. The study also explores the largely uncharted territory of financial caregivers, a role held by 92 percent of caregivers. Key findings include: (1) The 40 million family and friend caregivers in the U.S. collectively spend $190 billion per year on their adult care recipients, (2) Ninety-six percent of caregiving involves much more than hands on care, (3) Financial coordination is the most common form of caregiving, (4) Respondents find navigating health insurance expenses to be the top challenge of financial coordination, and (5) Sixty-six percent of caregivers feel they could benefit from financial advice.
Attribution: Merrill Lynch, conducted in partnership with Age Wave
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Young Caregivers in the U.S. (2005) This report, the survey on which it is based, and its recommendations affirm the central role of parents as guardians of their children. Without compelling evidence to the contrary, parents are presumed to have their children’s best interests at heart. This report presents the results of two studies conducted by Mathew Greenwald & Associates, Inc. The research had three main objectives: To determine the prevalence of caregiving among children nationwide; To learn what role children play in giving care; and to learn how the caregiving role impacts the life of a child.
Attribution: National Alliance for Caregiving, in collaboration with National Hospital Fund
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