Supporting People as the Age

I am an old woman by chronological age, which is seventy-five, and by society’s standard of who is old. I am a gerontologist by training, which means I study and teach about the experience of aging. It is one thing to teach about positive aging to my students and participants in my training classes. It is another to experience the ageism I try so hard to prevent and eliminate.

I think of myself as at least 20 years younger than I am. Apparently, my health care providers, store clerks, and fellow passengers on flights across country can see my age. I have been termed “honey” and “sweetheart,” of which I am not, too many times to count by those who see me as an old woman.

In aging, each person becomes more of who she or he has been over a lifetime. View each person for their uniqueness, not their age.

Some ageists believe calling me “young lady,” when it is obvious I am not nor do I need to feel better about being old, is complimentary, cute, and will make me feel young again. It does not and is extremely insulting. It assumes that I will not know any better that I am not young or realize they are thinking more about my age than they are of me as a unique person. I expected the academic knowledge about aging I have gained would protect me from this type of ageism. It has not.

I have experienced much younger health care providers misdiagnosing me with a fatal illness such as cancer after meeting me for 10 minutes, never reading my historical charts, or even making sure the brief information I gave the admitting nurse was entered correctly in the chart. Too often, the information entered has not been correct. The health care providers are unwilling to change the record when I point out the difference between what I report and what is in the chart. It makes me suspect they think I am retired from life and intellect.

Dr. Kathleen Bishop

I share these common experiences with you, the direct support professionals (DSPs) who care for older adults with intellectual and developmental disabilities (IDD), to emphasize how much worse it is for people who have a lifelong diagnosis. Adults with IDD have spent a lifetime trying to report their pain and symptoms, only to be ignored even if they clearly verbalize the information. Nonverbal cues, such as refusing to move from their bed because of underlying pain, are too often labeled as “noncompliant behavior.” Older adults behavior too often is automatically labeled as a symptom of dementia, rather than a form of communication or clue to possible pain and discomfort.

Below are three important concepts about aging in adults with IDD for you as a DSP. This information will also help you or a family member age well.

Aging is not a disease to avoid or dread.

Aging is not a disease. It is also not contagious. In aging, each person becomes more of who she or he has been over a lifetime. View each person for their uniqueness, not their age. Help others, such as health care providers, to also see this uniqueness, viewing the adult rather than a diagnosis. Any change from who the person has been over a lifetime is one of the clues that can help health care providers determine underlying causes for any health changes.

Behavior and personality do not usually change as people age. Changes you notice need to be reported to health care providers or supervisors who oversee health care. Diagnosing older adults is complicated by the fact that older adults usually have multiple underlying conditions causing discomfort. Older adults with IDD are often associated with multiple stereotypes and myths, including the incorrect assumption that Alzheimer’s type dementia is inevitable in people with Down syndrome and other types of IDD, when it is not. The risk is higher, but not inevitable. More information is needed to rule conditions out and treat the causes of the changes before concluding that Alzheimer’s disease or another type of dementia is probable. Correct diagnosis can only be successful when you share the valuable information you know as a DSP about the person, including changes you have observed.

A good quality of life, regardless of diseases and conditions, can be supported by DSPs who understand what is important to the older adult.

If you are a DSP supporting an older person, one helpful strategy is to try to learn each person’s life story. If no story is available or the adult is no longer able to tell their story in an understandable way, try to find someone who has known the person a long time, such as a former DSP or a family member. Work with the person supported to capture their memories through video, scrapbooks, writing, and organizing photo albums. You could also create something starting with the present day, including visuals of favorite foods, activities, music, objects, and other things they enjoy.

Any adult, regardless of pre-existing diagnosis or risk factors, can age successfully especially with your help.

As a DSP, you get the gift of time spent with each person you support, which allows you to learn their essence, such as interests, dreams, and desires. This information means you know when there are changes in function, behavior, and capacity. Those changes are usually related to a physical environment no longer meeting the needs of the person (if it ever did), an age-associated condition or disease, underlying mental health problem, or grief from the loss of a loved one, peer, a familiar caregiver, or change in program or residential setting. Sometimes a change in the time the person is picked up from their work or other daily activity can disrupt the person’s routine and cause a major change in desire to participate in usual activities.

All older adults are at increased risk for disease, age-related conditions, and the onset of new diseases. All older adults also have the potential for successful aging. An excellent quality of life, regardless of diseases and conditions, can be supported by DSPs who understand what is important to the older adult. Reporting symptoms of pain or discomfort to nurses and supervisors can facilitate pain control and reduce the frustration of being ignored when exhibiting pain. Remember all behavior has meaning. Your reporting the symptoms can help identify the cause.

Never assume old age is the cause of the changes. Communicate your concerns about the changes and symptoms you have noticed with others on the person’s support team. Your information is essential for health care providers and clinicians who make decisions on assessment, evaluation, and interventions for care.

As the day-to-day direct support professional, you can have influence in quality of life and function by adjusting the sensory and physical environment.

Human beings are connected to the world and people around them through touch, vision, hearing, taste, smell, and their senses of movement and location in space. Keeping people connected and involved with others around them is vital in helping older adults remain active and feel valued.

You may be first to notice difficulty doing routine tasks or using familiar objects. Look for what isn’t working in the environment first and adjust it to the person supported. As we age, environments that once met our needs may become impossible to use, making the person appear confused and unable to perform tasks performed easily in the past. For example, eating a meal of turkey, cauliflower, and mashed potatoes on a white plate, that was difficult before because the food and plates had no contrasting colors, can now become impossible if the person is having visual issues.

Be thoughtful about your observations and support. Recently, I presented training that included technology. The people helping me run technology had checked the video audio and assured me the audio would play easily. My co-trainers told the organizers how I hate modern technology if it doesn’t work as promised. When I tried to show a video, the audio did not work. I mentioned this to my co-trainers and the audience, who helpfully suggested how to turn on the audio. After telling the audience six times that the audio was simply not working and we needed assistance, the request was finally honored. Since I had already been labeled as a technologically inferior person, it was automatically assumed was it was my fault. Then the people helping me run the technology came and identified the problem as the audio not working, requiring a reset of the system. It was frustrating to have my request for assistance ignored so many times before I got the help I needed from others. Older people, particularly people with IDD, are commonly ignored—and frustrated—when requesting assistance.

As a DSP, you are valuable to the people you support, especially as they age. I am honored to have been asked to write this article for your publication. I hope I have helped you think how to make a positive difference in an older person’s life. To quote Dr. Seuss, “To the world, you may be one person; to one person, you may be the world.”

Resources

National Task Group on Intellectual Disabilities and Dementia Practices (2012). My Thinker’s not working: A National Strategy for Enabling adults with intellectual disabilities affected by dementia to remain in their community and receive quality supports.https://www.the-ntg.org/_files/ugd/8c1d0a_bb968753e9bd4fbea31a8322ecf71ab6.pdf

Bishop, K. M. (2025, March 16). Dementia Capable Care, IDD, and the Importance of Essence. Helen: The Journal of Human Exceptionality. https://helenjournal.org/march-2025/dementia-capable-care-idd-and-the-importance-of-essence

Bishop, K. M., Hogan, M., Janicki, M. P., Keller, S. M., Lucchino, R., Mughal, D. T., Perkins, E. A., Singh, B. K., Service, K., Wolfson, S., and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices. (2014). Guidelines for Dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on Intellectual Disabilities and Dementia Practices. www.aadmd.org/ntg

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