Journeys: Sensory Processing, Sensory Impairments, & Aging
By Kathleen M. Bishop, Ph.D. Gerontologist
A Personal Perspective: Sensory Processing, Sensory Impairments, Aging, and Intellectual/Developmental Disabilities
This introductory article intended to be the first of many articles on this topic, introduces the importance of understanding sensory processing, sensory impairments, and their connection to capacity for quality of life and functioning for older adults with intellectual/developmental disabilities. This understanding can be used to modify physical and social environments to better meet the needs of older adults in the general population and with pre-existing disabilities. The responsibility of the adjustments to design usable and compatible environments becomes all our responsibility rather than an individual problem and challenge.
I wrote this first article from a personal, historical perspective and hope it will increase understanding of the importance of fitting environments to the needs of people rather than people to the physical environment. Today, with growing numbers of adults with intellectual/ developmental disabilities who are living longer than ever before, it is essential sensory needs, impairments, and processing challenges are included as part of screening, assessment, and diagnosis to assure the best possible quality of health.
Too often, older adults who exhibit cognitive and/or functioning decline are assumed by health care providers and others to have Alzheimer’s disease or Related Dementias (ADRDs) with no further assessment conducted.
ADRDs are diagnosed through differential diagnosis to determine other underlying causes for changes and decline. Alzheimer’s disease is diagnosed by a process of exclusion of other underlying causes until there are no other probable causes for the decline, rather than coming to an immediate diagnosis.
Knowledge of sensory preferences and issues gives information that can assist with informed environmental modifications. From this author’s viewpoint, simple and cost-effective modifications should be the first intervention and not the last. As Temple Grandin (2013, p70) emphasizes in her book, The Autistic Brain, “Our senses are how each of us understands everything that is not us. Sight, sound, smell, taste, and touch are the only ways…that the universe can communicate with us.”
I am a Gerontologist with expertise on aging with intellectual/ developmental disabilities and a current focus on understanding and teaching dementia capable care for adults with intellectual/ developmental disabilities. I began my career as a pre-school special education teacher and was hired as an Intermediate Care Facility Program Manager in 1982,. After three years in that job, I was promoted to a position in Staff Development and Training in the former Rome Developmental Center/Developmental Disability Organization (DDSO) in Upstate NY, the department I remained in until my early retirement in 2007.
Within three months of joining the training department, the Director of the DDSO asked me to attend a weeklong training on Person Centered Care and Aging to learn about aging in all adults. He hoped I would use that information to advise the agency of future training needs as higher percentages of people with intellectual/ developmental disabilities were living longer. The day-long class that most interested me was ‘Aging and Physical Environmental Modifications to Meet Changing Needs.’
I knew I had found my life’s cause, as simple physical modifications could make a difference one person at a time, or for hundreds, by small and affordable changes to environments. The topic including the impact of sensory stimuli on individual functioning interested me enough to return to graduate school at Syracuse University to earn my Ph.D. in aging with developmental disabilities.
It was challenging at that time to find a program related to my interest. No Gerontology program existed for people with intellectual/ developmental disabilities at Syracuse University, the Gerontology program then available had only been funded the previous year. When I discussed my interest in physical environments for older adults with disabilities, I was discouraged from applying to the gerontology program as there was no one there to mentor me on that topic or had any interest in this subject.
Fortunately, the School of Education where I had received my master’s degree accepted me, giving me the opportunity to create my own program and independent studies. I was unable to apply for residency due to my personal family situation. Instead, the program accepted me as the first person in this Ph.D. program without residency. The concern was that traditionally. Ph.D students were expected to devote full time to their studies to complete their degree in a timely manner.
The pressure was on for me to complete my Ph.D. within a few years so others, especially future female applicants who were in similar circumstances would be able to attend as I did. Many years later, most programs provide opportunities for part-time Ph.D. studies, especially related to the need for distance learning due to COVID.
Today, most Gerontological programs and departments include courses on intellectual/ developmental disabilities. Most have classes on physical environmental modifications as it is now recognized as important for older adults’ quality of life, health, and function. Many gerontology programs include courses on creating supportive physical environments that are designed to meet changing needs related to aging-related conditions, even though gerontology programs or degrees with study of older adults with intellectual/ developmental disabilities are still rare.
Just prior to my entering graduate school, I was asked to join the advisory board for the newly federally funded Training Program on Aging and Developmental Disabilities (TPADD) at the University of Rochester School of Medicine and Dentistry. As I began my studies, I was asked to assume the role of Director of TPADD from the retiring Director as a part-time job while continuing to work full-time for New York State. Modifying the physical environment became the most requested topic and my favorite to teach.
My work in the university and in my staff development position resulted in numerous curriculums and resources on environments, including checklists to gather baseline sensory information on individuals, group homes, and buildings used for program activities. The checklists are designed to provide practical information on individual sensory needs to conduct informed environmental modifications to best meet the needs of the users of the physical environments.
Initially, I thought there would be definitive and final designs for everyone that would facilitate functioning and reduce any negative impact from pre-existing disabilities or ongoing aging. I soon learned there is never one answer as one environmental solution in group settings intended for one person may have an unintentionally negative effect on another user of the environment. Changing the physical environment is a continual and evolving process with no beginning and no end. Physical modifications for each person in a home are truly the most person-centered approach that can be applied.
I expected when I consulted with an organization, individual, and/or family I could provide permanent solutions. Instead, each individual responds to sensory stimuli, processes the information in the environment, and functions within the environment uniquely within patterns of lifelong responses and aging effects. The ability to function within environments may vary not only by individual but also by time of the day, day of the week, and season of the year impacting individual responses and utilization of the sensory information.
It is necessary for individuals, family, and other caregivers to participate in environmental modifications for long-term positive results. Sensory related impairments increase with aging in the general population and in people with intellectual/ developmental disabilities, especially adults with Down syndrome. Understanding by caregivers of the likelihood of increased difficulty in using physical environments will aid in the awareness of the need to change the physical environment to meet needs of the users.
In future articles, I plan to define sensory processing and describe how processing disorders acquired early in life or later can impact functioning and behavior. I will also discuss the eight senses, effect of impairments in aging, and ways to create or at least improve supportive environments. I plan to provide practical and inexpensive ways to modify or adjust the environment to help each person age with dignity and capacity to remain connected to others regardless of the degree of impairment. I will also discuss the influence of ADRDs on the capacity of persons to utilize and process sensory stimuli with a focus on the challenge of the sense of being lost in space and time, one of the most commonly experienced sensations for persons with an ADRD.
I hope that my personal perspective will stimulate your interest in this topic or will spark your interest in sharing with others what you already know on this topic. As I challenge my students, if nothing else, please never take the physical environment for granted again. Take the time to make small changes that help facilitate the quality of life and health, especially for older adults in your world. Assume the problem is a result of the physical environment rather than a problem internal to the adult with intellectual/ developmental disabilities.
I encourage questions and requests for information related to this topic. Please feel free to contact me at kathiebishop@the-ntg.org . Thank you to Dr. Rick Rader and his editors for giving me the space to write this article and to you the reader who took the time to consider the information to use to make a positive difference for others.
The Author
Kathleen M. Bishop, Ph.D. has over 40 years of experience in the developmental disabilities field and over 25 as a Gerontologist with a specialty in aging with developmental disabilities. She has a BS from SUNY at Geneseo, MS in Special Education and a Ph.D. from Syracuse University in aging with disabilities. Dr. Bishop works as a consultant for many organizations in the aging and IDD networks to assist with program and support planning as well as teaches at Utica College on-line courses on aging with disabilities. She is retired from the University of Rochester School and the NYS OPWD. She teaches, presents, and shares knowledge nationally and internationally as she has a unique skill set on aging and intellectual/developmental disabilities (IDD). Dr. Bishop is co-chair of the NTG Education and Training committee, VP for the NTG, Co-chair of the Advisory Body, and a member of Executive Committee and Board. She has been an active member of the NTG since its inception.
Resources:
Bishop, K., Hogan, M., Janicki, M., Keller, S., Lucchino, R., Mughal, D., Perkins, E., Singh, B., Service, K., Wolfson, S., & the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices (2015). Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, Vol. 53, No. 1, 2 – 29.
Bishop, K. (2017). Aging and Developmental Disabilities. Geriatric Rehabilitation: From Bedside to Curbside. Ed K Rao Podori, CRC Press. Pp 517 – 529.
McGuire, D. & Chicoine, B. (2005). Mental Wellness in Adults with Down Syndrome. Bethesda, MD: Woodbine House.
Grandin, T. & Panek, R. (2013). The Autistic Brain: Helping Different kinds of Minds Succeed.
Heller, S. (2003). Too loud too bright too fast too tight: what to do if you are sensory defensive in an overstimulating world. NY, NY: Quill Publishing.
Heller, S. (2015). Uptight & Off Center. How Sensory Processing Disorder Throws Adults off Balance & How to Create Stability. Delray Beach, Florida: Symmetry.
Schneider, Rachel (2015). Making Sense. A guide to Sensory Issues. Arlington, Texas: Sensory World.
Vaughan, A. (February 13, 2015). Behavior and Sensory Processing: Two Sides of the Same Coin. Retrieved December 16, 2022 from https://www.nacac.org/resource/behavior-and-sensory-processing