Not too long ago, people with certain physical, intellectual, or developmental disabilities were not expected to have what could be considered a normal life span. But not anymore. For the first time, in alignment with the aging of the general population, people with lifespan disabilities are living longer than before. As they live longer, they need to learn how they can also live better throughout the aging process.
Dr. Amy Eisenstein, Director of CJE’s Leonard Schanfield Research Institute, and partners from the Shirley Ryan AbilityLab, Access Living of Chicago and Northwestern University’s Feinberg School of Medicine are doing research on this emerging topic. They have developed a project, entitled “Resilience in Aging with Disabilities,” to look at the intersection of aging and disability, which aims to study the social, behavioral and environmental differences among people aging with physical disabilities, either lifelong or early onset. In their work, the partners have found that most people with disabilities approach aging in two different ways, and thus fall into two groups.
People in the first group display a great deal of resilience—the capacity to recover quickly from difficulties. When they do experience an age-related comorbidity (two or more disorders or diseases at the same time), they bounce back using coping strategies that they’ve already developed. These individuals have a certain toughness that they’ve developed, and they do really well as they age. People in the second group do not cope well when age-related comorbidities strike. They’ve accepted their disability and deal with it, but piling on the problems and complications of aging is too much for them. This group of people has not figured out how to withstand these extra problems. They have not developed the mental and physical flexibility and strength to manage what old age throws at them and therefore, do not age well. With these two groups in mind, the researchers’ goal is to investigate how people with disabilities develop resilience and, hopefully, will provide information that will enable healthcare providers, aging experts and disability communities help aging persons with disabilities maintain quality of life and enjoy healthy, independent lives.
Why the study? As mentioned above, people are living healthier and longer. That goes for people with long-term physical disabilities as well. Unlike in earlier decades, a person with early onset disability can now be expected to live for more years with their disability. However, little research has been done on how an extended life expectancy impacts long-term disability. With the massive Baby Boomer generation continuing to age, it’s imperative that we understand the issue of how aging and the onset of comorbidities affect long-term disability. Healthcare providers need to be more aware of the specific conditions of aging. Also the systems of disability and aging must work together to help people understand how persons with long-term disabilities adapt and cope as they reach old age. It has been estimated that 12 million Americans have a disability acquired in early or midlife and are now aging with the disability. 2 Persons with disabilities are approaching life spans of their non-disabled peers and they are experiencing the same type of complications that affect all older adults. But their disability makes them different.
According to Eisenstein, the goal of the project is “to identify resources and behavior that will foster resilience and to gain an understanding of resilience.” The creation of a holistic framework for promoting resilience is another goal. Finally, the researchers would like to create a “menu” of recommendations for interventions to help increase resilience and quality of life. Resilience and quality of life are closely related, with those individuals who possess high levels of resilience reporting a better quality of life. There is actually a paradox that exists whereby people who experience life-long disabilities report very high quality of life (sometimes higher than the general population), something that one would not expect.
The seed for the project grew from the experiences of all the partners when it came to dealing with older adults with disabilities. Anecdotally, some of the partners have noticed the two models of resilience and non-resilience in aging in their work with older adults with disabilities. One partner at Access Living, Judy Panko Reis, who has a disability herself, can speak to the experience quite well, as she noticed some physical changes brought on by her own aging. According to Panko Reis, who is 65, she has more fatigue and more limited vision, but considers herself resilient in the face of these issues. “Anyone with a disability working past 65 is resilient by definition,” she says. Her goal for the study is to “identify unmet needs of aging people with disabilities and possible strategies to assist them age with independence and dignity.” Panko Reis says an advantage she has as an aging person with a disability is that she knows how to create a life of independence through interdependence with others and the use of community and medical supports and devices. She adds, “Also, I know how to self advocate for my own needs socially and medically.”
Tom Wilson, also of Access Living, recognizes that some people are able to overcome the complexities of their situation better than others. He has observed that people who advocate for themselves and others with similar conditions, and are not completely reliant on a family member for support tend to be more resilient in the face of aging. He suggests that social and environmental research on resilience will benefit other persons with disabilities living to 65 and beyond. Elliot Roth, M.D., the Medical Co-Director of the Brain Innovation Center at Shirley Ryan AbilityLab and Chairman of the Department of Physical Medicine and Rehabilitation at Northwestern University Feinberg School of Medicine, is a renowned expert in stroke and spinal cord injury. He explains that his patients with long-term disabilities tend to experience comorbidities (like arthritis, pain and movement issues) earlier and perhaps more often than persons without disabilities. They’ve also been living longer than before most likely because of medical advances and better care.
Dr. Roth’s participation gives the team the opportunity to obtain his patients’ responses through surveys, but more importantly, personal perspectives of people with disabilities obtained through structured interviews and focus groups. Roth explains, “The point is to understand why some are so resilient and why others aren’t … to help us understand what goes into that resilience that has enabled them to deal with the issues over the long term, in the face of often extremely adverse conditions.” Through the study, Roth said valuable resources would be developed: “Printed materials; person-to-person programs like peer counselors, peer mentors, special training programs, counseling programs or support groups.”
A fourth partner in the project is Rebecca Johnson, Ph.D., Research Assistant Professor at Northwestern University Feinberg School of Medicine, Department of Medical Social Sciences. She is a social gerontologist with interests in the experiences of older people relative to where they are aging.
The concept of resilience is not new in the academic world. But few authors have looked at adults with lifespan disabilities and aging. Research suggests that resilience in elders can be attributed to essential psychological resources including self-esteem, personal competence and control. The researchers in this study propose to analyze how social, behavioral and environmental notions impact the resilience and quality of life of persons aging with lifespan disability.
According to Eisenstein, a major goal of this project is to get all of the different partners in the community discussing and communicating about the intersection of aging with disabilities. With the information gained from the project, they hope to provide a greater understanding of the issue of resilience and disabilities, to build and disseminate this knowledge and take a big step in promoting health and developing resources about this issue.
1 La Plante MP. “Key goals and indicators for successful aging of adults with early-onset disability.” Disability and Health Journal. 2014;
2 Kemp BJ, et al. Aging with a Disability: What the Clinician Needs to Know. Baltimore: Johns Hopkins University Press. 2004; p. 1-5.