Forum on Aging, Disability, and Independence

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Family members and other caregivers are increasingly providing complex, long-term care for loved ones living with serious illnesses or disabilities. While caregiving can be deeply meaningful, it also can bring significant physical, emotional, and financial burdens. The National Academies convened a public workshop in June 2025 to examine strategies to reduce caregiver burden; practices to serve the unique needs of populations such as young and working caregivers; and opportunities to scale successful programs and advance supportive policies across health, social, and workplace settings. This Proceedings of a Workshop-in Brief provides a summary of the workshop presentations and discussions, including perspectives from family caregivers, health care providers, researchers, and policy leaders.

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21 pages · 8.5 x 11 ·
ISBN Ebook: 0-309-59964-4
DOI: https://doi.org/10.17226/29237

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National Academies of Sciences, Engineering, and Medicine. 2025. Strategies and Interventions to Strengthen Support for Family Caregivers for Individuals with Serious Illness or Disability: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press.

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Although traumatic brain injury (TBI) is a major cause of disability for adults over the age of 65, knowledge gaps and clinically relevant differences in TBI injury, recovery, and outcomes in this age group limit evidence-based care guidance. The National Academies organized a public workshop in October 2024 to explore what is known about TBI among older adults, discuss unmet research needs, and consider opportunities to address gaps and support the translation of new knowledge to practice.

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64 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-09962-5
ISBN Ebook: 0-309-09963-3
DOI: https://doi.org/10.17226/29099

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National Academies of Sciences, Engineering, and Medicine. 2025. Approaches to Address Unmet Research Needs in Traumatic Brain Injury Among Older Adults: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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The National Academies Roundtable on Quality Care for People with Serious Illness, National Cancer Policy Forum, and Forum on Aging, Disability and Independence hosted a workshop that examined opportunities to better support family caregiving for people with cancer or other serious illnesses. This workshop built upon previous work, including the 2016 consensus report Families Caring for an Aging America. This Proceedings of a Workshop summarizes the discussions held during the workshop, which focused on: strategies to better capture, understand, and act on family caregiver input and experience; research gaps and opportunities to guide caregiving for patients with serious illnesses; potential policy and practice opportunities to advance family-centered care for serious illness; and opportunities to embed a health equity focus across family caregiving research, policy, and practice.

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138 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-69391-8
ISBN Ebook: 0-309-69392-6
DOI: https://doi.org/10.17226/26721

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National Academies of Sciences, Engineering, and Medicine. 2023. Family Caregiving for People with Cancer and Other Serious Illnesses: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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To examine the potential role of companion animals as sentinels of relevant, shared environmental exposures that may affect human aging and cancer, the National Cancer Policy Forum held a workshop in collaboration with the Forum on Aging, Disability, and Independence and the Standing Committee on the Use of Emerging Science for Environmental Health Decisions to explore this promising and underutilized pathway for research. Presentations and panel discussions covered the current state of the science and pathways for accelerating research, along with opportunities and challenges for using this novel translational approach to exposure science to advance human health. This Proceedings of a Workshop outlines the presentations and discussions that occurred during the workshop.

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172 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-68794-2
ISBN Ebook: 0-309-68795-0
DOI: https://doi.org/10.17226/26547

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National Academies of Sciences, Engineering, and Medicine. 2022. Companion Animals as Sentinels for Predicting Environmental Exposure Effects on Aging and Cancer Susceptibility in Humans: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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There is a void in evidence-based information for making informed decisions on how to optimize care for older adults, particularly those 80 years and over. Because older adults are vastly underrepresented in clinical trials, there is a dearth of information about the appropriate use of drugs in this population. Yet older adults have higher rates of comorbidities and simultaneous use of multiple medications than the general population, and are the majority users of many medications. Additionally, age-related physiological and pathological changes, particularly for adults 80 years of age and older, can lead to significant differences in the pharmacokinetics (PK)2 and pharmacodynamics (PD)3 of a given drug compared to the general population.

On August 5 and 6, 2020, the National Academies of Sciences, Engineering, and Medicine hosted a workshop titled Drug Research and Development for Adults Across the Older Age Span. The workshop was designed to examine the challenges and opportunities in drug research and development for older adult populations, explore barriers that impede safety and efficacy studies in these populations, and share lessons learned for better understanding clinical pharmacology for populations over age 65. This publication summarizes the presentation and discussion of the workshop.

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142 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-68568-0
ISBN Ebook: 0-309-68569-9
DOI: https://doi.org/10.17226/25998

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National Academies of Sciences, Engineering, and Medicine. 2021. Drug Research and Development for Adults Across the Older Age Span: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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The National Academies of Sciences, Engineering, and Medicine hosted the virtual workshop Improving the Evidence Base for Treatment Decision Making for Older Adults with Cancer on January 22, 25, and 27, 2021. This workshop was convened by three forums of the National Academies: the National Cancer Policy Forum; the Forum on Drug Discovery, Development, and Translation; and the Forum on Aging, Disability, and Independence. Workshop speakers examined the persistent underrepresentation of older adults in cancer clinical trials across the drug development continuum and identified potential solutions to strengthen the evidence base to inform treatment decision making for older adults with cancer. This publication summarizes the workshop presentations and discussion.

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10 pages · 8.5 x 11 ·
ISBN Ebook: 0-309-48276-3
DOI: https://doi.org/10.17226/26157

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National Academies of Sciences, Engineering, and Medicine. 2021. Improving the Evidence Base for Treatment Decision Making for Older Adults with Cancer: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press.

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Workshop_in_brief

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On October 24, 2018, the National Academies of Sciences, Engineering, and Medicine held a workshop titled Artificial Intelligence Applications for Older Adults and People with Disabilities: Balancing Safety and Autonomy. This workshop examined the state of the art and knowledge about artificial intelligence and explored its potential to foster a balance of safety and autonomy for older adults and people with disabilities who strive to live as independently as possible. This publication summarizes the presentations and discussions from the workshop.

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9 pages · 8.5 x 11 ·
ISBN Ebook: 0-309-49202-5
DOI: https://doi.org/10.17226/25427

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National Academies of Sciences, Engineering, and Medicine. 2019. Artificial Intelligence Applications for Older Adults and People with Disabilities: Balancing Safety and Autonomy: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press.

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Many different groups of people are subject to stereotypes. Positive stereotypes (e.g., "older and wiser") may provide a benefit to the relevant groups. However, negative stereotypes of aging and of disability continue to persist and, in some cases, remain socially acceptable. Research has shown that when exposed to negative images of aging, older persons demonstrate poor physical and cognitive performance and function, while those who are exposed to positive images of aging (or who have positive self-perceptions of aging) demonstrate better performance and function. Furthermore, an individual's expectations about and perceptions of aging can predict future health outcomes. To better understand how stereotypes affect older adults and individuals with disabilities, the National Academies of Sciences, Engineering, and Medicine, with support from AARP, convened a public workshop on October 10, 2017. This publication summarizes the presentations and discussions from the workshop.

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One-page informational overview

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102 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-47229-6
ISBN Ebook: 0-309-47230-X
DOI: https://doi.org/10.17226/25029

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National Academies of Sciences, Engineering, and Medicine. 2018. Aging and Disability: Beyond Stereotypes to Inclusion: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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Accessible and affordable housing can enable community living, maximize independence, and promote health for vulnerable populations. However, the United States faces a shortage of affordable and accessible housing for low-income older adults and individuals living with disabilities. This shortage is expected to grow over the coming years given the population shifts leading to greater numbers of older adults and of individuals living with disabilities.

Housing is a social determinant of health and has direct effects on health outcomes, but this relationship has not been thoroughly investigated. In December 2016, the National Academies of Sciences, Engineering, and Medicine convened a public workshop to better understand the importance of affordable and accessible housing for older adults and people with disabilities, the barriers to providing this housing, the design principles for making housing accessible for these individuals, and the features of programs and policies that successfully provide affordable and accessible housing that supports community living for older adults and people with disabilities. This publication summarizes the presentations and discussions from the workshop.

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108 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-45980-X
ISBN Ebook: 0-309-45981-8
DOI: https://doi.org/10.17226/24787

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National Academies of Sciences, Engineering, and Medicine. 2017. Developing Affordable and Accessible Community-Based Housing for Vulnerable Adults: Proceedings of a Workshop. Washington, DC: The National Academies Press.

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Individuals with disabilities, chronic conditions, and functional impairments need a range of services and supports to keep living independently. However, there often is not a strong link between medical care provided in the home and the necessary social services and supports for independent living. Home health agencies and others are rising to the challenges of meeting the needs and demands of these populations to stay at home by exploring alternative models of care and payment approaches, the best use of their workforces, and technologies that can enhance independent living. All of these challenges and opportunities lead to the consideration of how home health care fits into the future health care system overall.

On September 30 and October 1, 2014, the Institute of Medicine and the National Research Council convened a public workshop on the future of home health care. The workshop brought together a spectrum of public and private stakeholders and thought leaders to improve understanding of the current role of Medicare home health care in supporting aging in place and in helping high-risk, chronically ill, and disabled Americans receive health care in their communities. Through presentations and discussion, participants explored the evolving role of Medicare home health care in caring for Americans in the future, including how to integrate Medicare home health care into new models for the delivery of care and the future health care marketplace. The workshop also considered the key policy reforms and investments in workforces, technologies, and research needed to leverage the value of home health care to support older Americans, and research priorities that can help clarify the value of home health care. This summary captures important points raised by the individual speakers and workshop participants.

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168 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-36753-0
ISBN Ebook: 0-309-36754-9
DOI: https://doi.org/10.17226/21662

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Institute of Medicine and National Research Council. 2015. The Future of Home Health Care: Workshop Summary. Washington, DC: The National Academies Press.

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Being able to communicate is a cornerstone of healthy aging. People need to make themselves understood and to understand others to remain cognitively and socially engaged with families, friends, and other individuals. When they are unable to communicate, people with hearing impairments can become socially isolated, and social isolation can be an important driver of morbidity and mortality in older adults. Despite the critical importance of communication, many older adults have hearing loss that interferes with their social interactions and enjoyment of life. People may turn up the volume on their televisions or stereos, miss words in a conversation, go to fewer public places where it is difficult to hear, or worry about missing an alarm or notification. In other cases, hearing loss is much more severe, and people may retreat into a hard-to-reach shell. Yet fewer than one in seven older Americans with hearing loss use hearing aids, despite rapidly advancing technologies and innovative approaches to hearing health care. In addition, there may not be an adequate number of professionals trained to address the growing need for hearing health care for older adults. Further, Medicare does not cover routine hearing exams, hearing aids, or exams for fitting hearing aids, which can be prohibitively expensive for many older adults.

Hearing Loss and Healthy Aging is the summary of a workshop convened by the Forum on Aging, Disability, and Independence in January 2014 on age-related hearing loss. Researchers, advocates, policy makers, entrepreneurs, regulators, and others discussed this pressing social and public health issue. This report examines the ways in which age-related hearing loss affects healthy aging, and how the spectrum of public and private stakeholders can work together to address hearing loss in older adults as a public health issue.

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128 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-30226-9
ISBN Ebook: 0-309-30227-7
DOI: https://doi.org/10.17226/18735

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Institute of Medicine and National Research Council. 2014. Hearing Loss and Healthy Aging: Workshop Summary. Washington, DC: The National Academies Press.

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Forum on Aging, Disability, and Independence

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Forum on Aging, Disability, and Independence

Strategies and Interventions to Strengthen Support for Family Caregivers for Individuals with Serious Illness or Disability: Proceedings of a Workshop—in Brief

Publications

Perspectives

Brochure, Booklet, Pamphlet

Background Material