The nation has begun to recognize the essential role that unpaid friends and family members play in supporting individuals with ongoing health and assistance needs. Yet these informal support systems are not sufficient to support the many Americans with care needs. Policymakers need pathways that will encourage businesses, entrepreneurs, think tanks and incubators to find sustainable marketplace solutions to support and augment the support provided by family caregivers across the lifespan. The following papers provide policy analysis and business insight into the challenges facing caregivers and those who serve them.
Family Caregiver Roles in Medical Product Development
NAC, in partnership with the Leaders Engaged on Alzheimer’s Disease (LEAD) Coalition, is proud to release Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development, which explores the vital roles that family caregivers can play in shaping biomedical research and development, regulatory decision-making, and healthcare delivery.
This first-of-its-kind report addresses how to incorporate the critical knowledge of caregivers in developing pharmaceutical products, biologic therapies, diagnostics, and medical devices. The report provides recommendations for leveraging caregivers’ enormous reservoir of information and observations about the conditions their care recipients experience and associated health outcomes. The report was developed with clear recognition that people living with various health conditions along with their friends and family members are essential partners in the delivery of health care.
Informed by their lived experiences, these citizen scientists often can provide remarkable and pivotal insights into what drugs and devices are needed, what therapeutic benefits matter and how much, what degree of risk or potential harms are tolerable, how clinical research should be conducted, and how safety and efficacy should be measured. The person receiving care and the persons providing care offer complementary insights into the way that disease and disability impacts families and informal social structures.
|Paving the Path: Full Report (PDF)
The full report captures perspectives from more than 40 stakeholder groups working in medical product development. Topics include defining today’s caregivers and caregiving activities, roles for caregivers in patient-focused drug development, and actions to increase caregiver engagement in the drug and device development process.
|Paving the Path in Brief (PDF)
This two-page document provides a brief overview of the full Paving the Path report, offering highlights from the November 2018 summit and insights for innovators.
Previous Reports and Projects
Caregiving Journey Map (Alzheimer's)
NAC is proud to have joined the AgingWell Hub to create an integrated journey map for those caring for loved ones with Alzheimer’s and other dementias. The map can be used to identify opportunities to provide support and intervention for caregivers, and in turn, to benefit their care recipients. Multiple players in today’s health care system — a pharmaceutical company, health care provider, health-related technology provider, university, leading national nonprofits and more — came together to share expert knowledge and proprietary research to develop the map from the perspective of consumers.
In this case, the consumer is the unpaid family caregiver of an older adult with Alzheimer’s disease. The goal of the caregiver journey map is to capture the 360-degree experience of individuals caring for a loved one with Alzheimer’s or other serious cognitive impairment.
Creating a common framework and terminology allows us to:
1. Identify and prioritize areas where caregivers need support;
2. Drive alignment and collaboration across various players within the health care and community services ecosystem; and
3. Inform the development of technology-enabled solutions to benefit caregivers as well as their care recipients.
This report identifies actions that can be taken to understand and address the impact of family caregiving on the public’s health. With as many as 44 million people estimated to provide care to an older adult or person with a disability, current research has noted that unpaid family caregiving impacts not just individuals, but family units, communities, states, and the nation. 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. The report 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.
This white paper was made possible by grant funding from Genentech. It was made possible through the contributions and direction of subject-matter experts in caregiving and public health, including representatives from Johns Hopkins Bloomberg School of Public Health, Appalachian State University, the Centers for Disease Control and Revention, and the University of Pittsburgh.
Moving Forward on Behalf of Family Caregivers in the U.S.:
Designing a Public-Private Fund to Support Research and Innovation
In 2016, the National Academies of Science, Engineering, and Medicine (NASEM) released the report Families Caring for an Aging America. The report was prepared by an expert panel convened to examine what was known about family caregiving in the United States and to identify policies that would better support unpaid, friend or family caregivers of older adults (family caregivers). According to the Families report, at least 17.7 million people in the United States are family caregivers for an individual 65 years of age or older with a significant health problem or disability.
The report outlines the underlying factors that make action to develop policies that support family caregivers essential. For example, there is a rapidly increasing number of older Americans and a concomitant number of “shrinking families.” Not only does family caregiving have personal consequences for those family members who are providing care, but care may be complicated by systemic barriers such as difficulty in dealing with medical professionals or providers of home-based care or in some cases, being excluded from shared decision-making with the person receiving care and their providers. The report points out that while there are effective interventions that could engage and support family caregivers, few family caregivers have access to these assessments and professional interventions that could support both the family caregiver and the older adult.
The final recommendation to develop an innovation fund (also known as “Recommendation 3”) is now receiving attention and action in the current project described in this document. Recommendation 3 calls on the U.S. Secretaries of HHS, the Department of Labor, and the VA to work with leaders in health care and long-term services, technology, and philanthropy to set up a public-private fund for innovation and research that will accelerate change and address the needs of caregiving families.
With a grant from the Robert Wood Johnson Foundation, the National Alliance for Caregiving was honored to host a one-day summit on Public-Private Innovation in Family Caregiving on April 24, 2018. This report captures the multi-stakeholder input of that summit and offers a roadmap for next steps.
This report identifies key steps to better support family caregiving through the use of mobile, online, and in-home technologies. The report, Catalyzing Technology to Support Family Caregiving, follows an April 2014 roundtable featuring experts from government, Silicon Valley entrepreneurs, caregiving advocates and researchers. The roundtable developed six recommendations, summarized in the report, to inspire and guide the industry.
A 2011 survey reveals that the technology advances that have transformed how Americans work, play and interact have potential to alleviate the growing financial and emotional burdens on family members caring for sick or disabled loved ones. Notable findings include that more than two-thirds of family caregivers who have used some form of technology to help them with caregiving believe web-based and mobile technologies designed to facilitate caregiving would be helpful to them.
- e-Connected Family Caregiver: Bringing Caregiving into the 21st Century, Full Report (2011)
- e-Connected Family Caregiver: Bringing Caregiving into the 21st Century, Fact Sheet (2011)