Why Increased Focus on Aging With Disability Matters to Gerontology Research, Policy, and Practice

Abstract This symposium elaborates on the theme of the 2020 conference, “Why Age Matters”, to include aging with disability. We ask: “can an increased focus on aging with disability within gerontological research, policy, and practice advance our knowledge of disablement across the life cycle and improve our design and implementation of health and social service interventions’? Five experts will address this from differing perspectives (including gerontology and rehabilitation). One presentation draws on national/ regional data to illustrate the changing demographics of aging and disability and highlights the health consequences of aging with- and aging into, long-term physical disabilities. A second uses data from a mixed methods study to demonstrate the unique challenges experienced by adults aging with spinal cord injury with a focus on the impact of specific environmental barriers and facilitators to maintain health and participation in social roles. A third covers three reports on data from a scoping review to document the exclusion of middle-aged and older adults with disabilities from behavioral clinical trials and describes how translational research strategies can be used to help close this gap. A fourth presents examples of how technologies, such as videoconferencing and voice activation, are being used to deliver and enhance existing EB interventions to improve health, physical activity, and participation for individuals aging with mobility impairments. The last one draws on research and scholarly work from both gerontology and rehabilitation to highlight the co-occurring issues of ageism and ableism and describes how reducing ableism is central to successfully reframing aging. Lifelong Disabilities Interest Group Sponsored Symposium.


CREATIVITY'S IMPACT ON AGING AND HEALTH, 1970-2010
Wendy Miller, Create Therapy Institute, Kensington, Maryland, United States In the 1970, practitioners in the arts, aging, health, social work and allied therapeutic professions became pioneers in a newly formed movement of creative aging. Robert Butler's "Why Survive? Growing Old in America" called for rethinking aging and the services needed to support the growing aging population. Barriers to restrictions and the lower expectations around how older people could live in their communities began to change. Opportunities for engagement in the humanities and the arts began to be tailored to support older people's life style and to accommodate the sharing of their life experiences in new ways through partnerships with schools and senior centers. The rise of these practices promoted the first multi-year study of arts engagement impact on the health on older adults and a wave of publications and new research studies followed. These were the foundation for this strength-based initiative across the spectrum of aging. Nearly a decade ago, a federal interagency task force on the arts and human development was launched as the result of a research summit held by the National Endowment for the Arts and the U.S. Department of Health and Human Services to investigate the arts' relationships to health and well-being across the lifespan. Soon afterward, the National Institute on Aging partnered with the Arts Endowment and the National Academy of Sciences to identify research recommendations to benefit healthy aging and the treatment of neurodegenerative diseases in older-adult populations. While this session will revisit some of those findings, it also will share more recent advances in biomedical and behavioral research being conducted by a growing network of "Sound Health" researchers at the nexus of neuroscience, music, and health==with direct implications for the future of research on the arts and aging. From the grassroots development of creative aging research to broad base community collaborations that address the issues of today and tomorrow, this presentation will illustrate how state departments of aging and state arts agencies can combine to partnership with research universities to demonstrate the efficacy of the arts to mediate problems of loneliness, isolation and caregiver stress. This case study will show how resources can be expanded and effective practices established through community based research to find ways to build healthy and engaging communities that serve to break down the barriers of isolation and promote social networks.

WHY INCREASED FOCUS ON AGING WITH DISABILITY MATTERS TO GERONTOLOGY RESEARCH, POLICY, AND PRACTICE Chair: Margaret Campbell Discussant: Matthew Janicki
This symposium elaborates on the theme of the 2020 conference, "Why Age Matters", to include aging with disability.
GSA 2020 Annual Scientific Meeting Innovation in Aging, 2020, Vol. 4, No. S1 We ask: "can an increased focus on aging with disability within gerontological research, policy, and practice advance our knowledge of disablement across the life cycle and improve our design and implementation of health and social service interventions'? Five experts will address this from differing perspectives (including gerontology and rehabilitation). One presentation draws on national/ regional data to illustrate the changing demographics of aging and disability and highlights the health consequences of aging with-and aging into, long-term physical disabilities. A second uses data from a mixed methods study to demonstrate the unique challenges experienced by adults aging with spinal cord injury with a focus on the impact of specific environmental barriers and facilitators to maintain health and participation in social roles. A third covers three reports on data from a scoping review to document the exclusion of middle-aged and older adults with disabilities from behavioral clinical trials and describes how translational research strategies can be used to help close this gap. A fourth presents examples of how technologies, such as videoconferencing and voice activation, are being used to deliver and enhance existing EB interventions to improve health, physical activity, and participation for individuals aging with mobility impairments. The last one draws on research and scholarly work from both gerontology and rehabilitation to highlight the co-occurring issues of ageism and ableism and describes how reducing ableism is central to successfully reframing aging. Lifelong Disabilities Interest Group Sponsored Symposium.

CHANGING DEMOGRAPHICS OF AGING AND DISABILITY: IMPLICATIONS FOR ADVANCING KNOWLEDGE OF DISABLEMENT AND LIFE COURSE Margaret Campbell, Campbell & Associates Consulting, Grapeview, Washington, United States
Increased survivorship and longevity have resulted in dramatic improvements in life quality for people with significant disabilities and impairments. However, the fields of rehabilitation and gerontology have tended to divide this phenomenon into people aged under 65 aging with lifelong and early onset disabilities, and those aged 65 plus who are aging into late onset disability. But for both groups, increased survivorship also translates into more years living with comorbidities associated with the underlying condition and increased risk for premature onset and higher rates of age-related chronic conditions. Despite these widely acknowledged trends, we have no national data systems that estimate the overall prevalence of the 'aging with long-term disability' population and monitor its status. Acknowledged is that the lack of national data and reliance on chronological age undermines our knowledge of the disablement experience across the life course and the needs for services and supports associated with diverse trajectories. Part of a symposium sponsored by the Lifelong Disabilities Interest Group. Due to advances in medical care and technology the average age of people living with early-acquired spinal cord injury (SCI) is increasing. Approximately 40% of adults with SCI are over age 65. However, the cumulative effects of living with a SCI for many years make aging with SCI different from those "aging into disability". For example, unstable employment histories and the premature onset of secondary health conditions can create unique challenges for adults aging with SCI. Barriers and facilitators in the community environment play an important role for their ability to maintain health, engage in society, and participate in social roles. Data from a mixed methods study of ~200 adults (age 45+) aging with SCI, will be presented to demonstrate the impact of specific environmental barriers and facilitators and to stress the importance of understanding the complex dynamics of person-environment fit to fully support adults aging with and into disability. Part of a symposium sponsored by the Lifelong Disabilities Interest Group.

UNDERREPRESENTATION OF ADULTS AND OLDER ADULTS WITH DISABILITIES IN BEHAVIORAL CLINICAL TRIALS: A SCOPING REVIEW
Susan Stark, 1 Marian Keglovits, 2 and Sandra ESPÍN TELLO, 3 1. Washington University in St. Louis,St. Louis,Missouri,United States,2. Washington University School of Medicine,St. Louis,Missouri,United States,3

. University of the Basque Country (EHU/UPV), San Sebastián, Galicia, Spain
A lack of evidence-based interventions for people aging with long-term physical disabilities exists. To examine the exclusion of people with disabilities in behavioral clinical trials, a scoping review was conducted. ClinicalTrials.gov was searched for interventional behavioral studies from the United States completed from 2008-2018, with results focused on adults (18-64) and older adults (65+). In total, 158 clinical trials were included. In 129 articles, health conditions were excluded 697 times. Seventy-one clinical trials excluded at least one health condition with strong justification, 11 with poor justification, and 115 without justification. There is strong evidence that people with disabilities are excluded from behavioral clinical trials, often without justification. To help close this gap, our presentation will discuss how translational research strategies, focused on adapting existing EB behavioral trials, can be used to increase the availability of interventions that address the needs of individuals aging with and into long-term disabilities. Part of a symposium sponsored by the Lifelong Disabilities Interest Group.

LEVERAGING OPPORTUNITIES TO ADVANCE THE POTENTIAL OF TECHNOLOGY TO SUPPORT INDEPENDENCE AND AGING IN PLACE Tracy Mitzner, Georgia Institute of Technology, Atlanta, Georgia, United States
Technology holds great potential to support those aging with and into disability. Research and development efforts in the aging space (aging into disability) have traditionally focused on improving health conditions, whereas those in the disability space (aging with disability) have primarily focused on supporting activity and participation. Bridging these perspectives and approaches adds rich context to guide the development and evaluation of technology interventions.