Dementia Capable Care, IDD, and The Importance of Essence
By Kathleen M. Bishop, Ph.D.
“The essence of being human is that one does not seek perfection.” George Orwell
Adults with intellectual/developmental disabilities (IDD) are living longer, typically becoming more of who s/he has been throughout a lifetime. Increased life expectancy includes an increased risk for age-related diseases such as cardiovascular disease, diabetes, and Alzheimer’s disease, the most commonly diagnosed type of dementia in older adults. The risks for adults with IDD for diseases and age-related conditions are directly related to the types and severity of pre-existing factors such as degree of impact from disability on function, physical environment, sensory impairments, genetics, social networks, and lifestyle.
When an older adult with IDD exhibits signs of loss and changes compared to lifelong personality, behavior, and capacity, it is essential a differential diagnosis is conducted to determine possible underlying cause(s) for the decline or change in behavior. Too often, loss in older adults, especially adults with Down syndrome, is assumed to be a result of Alzheimer’s disease or another type of dementia. This is an assumption that should never be made!
Essential clues to determine possible underlying causes are established through access to baseline function, lifelong data, and understanding the essence of each adult. This article is a brief overview of straightforward ways families and current caregivers can help provide a supportive environment for the adult exhibiting significant losses in functioning. The purpose of this article is to provide family and other caregivers or advocates practical tips for learning the essentialness of each person, supporting each individual’s essence, and communicating that information to health care providers or others who conduct assessments and interventions. These tips for family and caregivers are to provide information that will help other caregivers providing assistance recognize the importance of the essence of that adult as baseline information for diagnosis and quality of care.
Every person has an individual purpose for living and a combination of characteristics that are unique to each individual. The unique nature and intrinsic character of each person is the personhood, also known as the essence of each and every being. It is important to maintain those essential qualities throughout the lifetime, especially when an older person experiences loss in function compared to lifelong functioning, or is unable to communicate those qualities to people who are unfamiliar with the individual.
Vocabulary.com defines essence as “whatever most sums up the heart and soul of something, the truest most indispensable qualities.” An example given on their website is Las Vegas’ essence as poker chips and dreams. Objects, cities, animals, and humans all have essence, making each unique and a gift to all of us in different ways.
Another example of essence is the uniqueness of one of my consults, Dottie, a 60-years-old female with Down syndrome and suspected dementia. Primary reasons for caregivers and healthcare providers believing she might have dementia was due to loss in weight, lack of interest in usual foods, extreme confusion in finding her way in familiar areas, and inability to conduct activities compared to her usual level of capability. I was asked to help Dottie, her family, and her residential care team prepare for a complete differential diagnosis with her primary caregiver.
I asked Dottie what was most important to her, trying to understand her more. She enthusiastically told us that what was most important to her were her mother’s visits to her home, bringing her favorite foods, painting with snacks by her side on the weekends, and dinner with her residential family. Each of the activities she noted as important to her relate to food, expressing how important the rituals around her favorite foods were to Dottie. Her obvious love for food was an important clue for the caregivers and health care providers.
While food favorites were not the sum total of Dottie’s essence, these were the most important to her at that time she was asked. It is vital to note that her primary medical provider through a multi-step diagnostic process found it was not likely she had Alzheimer’s disease. The symptoms of her refusal to eat even her favorite foods, recent loss in weight and apparent discomfort turned out to be primarily due to gastrointestinal problems. After intervention for the GI issues, Dottie returned to her usual self, including eating her favorite foods. While lab tests may have found the problems after numerous tests, Dottie’s reporting favorite activities relating to food helped prioritize the possible GI condition as the first to rule out.
Family and direct support professionals (DSPs) are in the best position to know their family members or care recipient as they usually spend more time with each individual. By sharing activities, interests, and unique characteristics through photos, videos, scrapbooks, and the life story, essence can be captured and reported to others. This provides clues as to how to maintain the primary factors of uniqueness. Adults with intellectual/developmental disabilities, especially if they have forms of communication that are difficult to understand, may have had their essence ignored or misunderstood over a lifetime.
Begin with sitting still and being present in the moment, something we are rarely encouraged to do as a caregiver. Observing how each individual demonstrates happiness, contentment or discomfort is a beginning to understanding that uniqueness. The information gained from being still can be communicated through photos, videos, artwork, and scrapbooks to help current and future carers.
Below are suggestions for seeking out essence:
1. Relate shared moments of happiness and contentment. How were they expressed?
2. How has unhappiness or fear been displayed in the past?
3. Who were his/her favorite pets, relatives, neighbors, and school friends?
4. Look at photos together of favorite places to visit, the former home, or activities.
5. Photograph individuals enjoying favorite foods, clothing, favorite places or events and personal objects.
6. Note favorite teams and sports activities. Are their favorite items associated with these favorites like a shirt or jacket he/she likes to wear?
7. Favorite songs, musicals, and dance?
8. What are the adults’ favorite holidays? How were they celebrated? Old photos or videos of past holidays can help caregivers provide holidays that are fun and less stressful for everyone.
These are just a few of the possible ways to find clues to each person’s essence. You can tell some hints for my essence as many of the recommendations above include food, just like Dottie’s response to me. Families can share this information through scrapbooks, videos, and photos, providing the valuable needed clues for maintaining essence.
Years ago, my husband and I were camping up in the St. Lawrence region of New York. On our way to an auction, we drove through a small town. On the side of the road was an adult robin standing next to another adult robin, not moving and apparently dead. The robin, we assumed to be the mate to the deceased robin, was still there, many hours later when we drove back through the village. It was also there the following morning. Later that evening, as we drove through the town again, we sadly noticed the robin had left the side of the mate that still lay in the same position on the side of the road.
The image remains with me to this day, helping me realize the importance of connections for beings. Often we don’t realize how important our essence is to make those connections. We need to understand that each person, with or without IDD, has an essence remaining throughout the course of a disease with cognitive and memory loss, even when the individual can no longer express the essence in the same way as previous to the disease.
Think of essence as a gift—keeping each person unique and prized.
Resources
Bishop et al (February 2015), Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices
Shih-Yin Lin &Frances Marcus Lewis (February 2015). Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future. Gerontologist, 55(2):237–244.
Vocabulary.com Dictionary, Vocabulary.com, https://www.vocabulary.com/dictionary/essence. Accessed 27 Oct. 2024.
Kathleen M. Bishop, Ph.D. has 40+ years of experience in the IDD field and 30 as a Gerontologist with a specialty in aging with IDD with a Ph.D. from Syracuse University in aging with disabilities.
Dr. Bishop is a consultant for organizations in the aging and IDD networks nationally and internationally, an Adjunct Faculty Member of Utica University, retired from the University of Rochester School of Medicine and Dentistry, and the NYS OPWDD. Dr. Bishop is the NTG’s (National Task Group on Intellectual Disabilities and Dementia Practices) and Dementia Care’s Education and Training Coordinator, a Lead Trainer for the 2-day NTG Dementia Capable Care for Adults with ID and the Third Day Train-the-Trainer to create NTG Affiliated Regional Trainers..
In her personal life, Dr. Bishop, under the pen name of Mary Kathleen McKenna, is author of the Women with Wisdom Series, 2 of the books in the series published in 2023 and the first in the Pets of Wisdom Series published in July 2024. She is HELEN Special Editor, Aging and Disability.