Where Am I?
how the environment enhances care for persons with Alzheimer’s and related dementias
IT IS BEDTIME AT TICK TOCK MANOR, things are done right on time at Tick Tock Manor. Contrary to a sleepy thought, one hears Sam down the long corridor, shouting “Help, help, help.....” When the caregiver approaches Sam, “What’s wrong Sam?”
“I want to go home,” cries Sam. He is sitting in his wheelchair, staring at the “EXIT” sign.
Here comes Elsie, doing her wheelchair shuffle, up and down the long hallway. When asked if she is ready for bedtime, Elsie replies, “I am looking for my pet doggie, have you seen him?“ She adds, “My doggie is lost on this long road.”
Mary goes by, picking up extra towels and briefs from the care cart as she passes by each of the others. Mary never wants to run out of supplies. One of the nurses attempts to convince Mary that she won”t be needing these things. Mary takes a good swing at her.
Gerry is being wheeled along in his wheelchair by his companion. “Are you ready for sleep time Gerry?” asks the caregiver.
“I am waiting for a taxi,” says Gerry.
Ingrid has a pair of scissors in her hand, and she is standing beside a picture of a bouquet of sweet–peas, poised to snip a stem. “Would you like to get ready for bed Ingrid?” She shakes her head, not understanding.
The caregiver gives up.
Florence is not wanting to change her clothes for bedtime. “No, no, no,” cries Florence. Her caregiver struggles to remove the clothes anyway, and discovers later that Florence only wants to save these same clothes for wearing tomorrow.
Sam, Elsie, Mary, Gerry, Ingrid, and Florence live at Tick Tock Manor because they have been diagnosed with Alzheimer’s disease and related dementias.
This is one bedtime at Tick Tock Manor when things will not be done quite on time.
The fact that there is no known cause and no known cure for Alzheimer’s disease is not uplifting for the care partners, both family and professional, nor for the person receiving the diagnosis. However, one of the best goals in treatment lies in the persons’ environment. The above case study illustrates some of the many challenges in caring for this special population. This paper will identify some simple environmental modifications in a dementia care setting, such as Tick Tock Manor, intended to dramatically improve the quality of life, both for the person with dementia and their care partner.
Utilizing the Professional Environmental Assessment Protocol (PEAP, 1994), organized with respect to eight therapeutic goals judged to be significant in the provision of dementia care, this paper will illustrate selected environmental features commonly found in Special Care Units (SCUs). This timely approach to care has been selected, allowing persons with Alzheimer’s disease and related dementias to live out their dementia in any manner they will live it out.
As a result of working in dementia care for over two decades, both as an educator and at the bedside, I have made many observations regarding the environment for persons with dementia. The purpose of this paper is to illustrate how some simple environmental modifications can enhance the quality of life and impact on behaviors of persons with dementia.
The clinician in charge invited me to visit Tick Tock Manor, a Special Care Unit (SCU) to make some observations. Naturally, in these times of tightening purse strings on our health care system, this clinician is looking for low–cost solutions for improvement in the environment. It is well known that there is no known cause and no known cure for Alzheimer’s disease. Before any of us get too depressed about this fact, we do know that one of the very best goals in treatment for Alzheimer’s disease lies in the environment.
In fact, when we lift the disease and embrace the person, one of our very best treatments is the environment. In particular, this clinician is looking for ways to modify the environment in the SCU. The very first feature I noted when entering the dementia care unit was the long, dark hospital corridor. (PEAP – therapeutic goal is to maximize safety and security). In the case study, Elsie is searching for her lost doggie on ‘this long road.’
Secondly, as we walked along, I noted there were many, many pictures hanging on either wall, narrowing the corridor even more. The environment for persons with dementia should be neither over stimulating nor under stimulating (PEAP – therapeutic goal is to regulate and provide quality of stimulation). The clinician agreed that many of these pictures, such as a medieval castle or a Christmas flower, were disorienting even for the mentally alert individual.
There was common agreement that it might be a good plan to remove the pictures. And she added that they already have some cans of paint that can be used to paint the walls in more pastel shades, eliminating the sense of darkness. This simple modification will be cost effective as well as enhancing the environment for persons with dementia.
As a plan to eliminate the perception of the long hallway, I suggested making three clusters along the way, utilizing benches at each cluster. The first bench will be a place where individuals can sit and look at the fish pond. The next stop along the way, there will be a bread maker. Who doesn’t love to smell fresh bread? And at the third cluster, there will be some nice soft classical music playing, where persons can sit and relax. This concept really draws the person to come and sit and relax while eliminating that feeling of the long, dark corridor (PEAP – therapeutic goal is to facilitate social contact). Gerry, who believes he is waiting for a taxi, can sit on one of the benches and talk to the fish as a form of distraction.
One thing I have learned very early in working with this population is that there seems to be nothing wrong with the person’s reading ability. In fact, many persons with dementia read very well. Everywhere in this SCU was signage, for example:
- FIRE EXTINGUISHER – what do you and I do when we see the word fire? We run.
- EXIT – what do persons with dementia want to do? Go home. ‘Hooray! I can get outta here!’
- PLEASE DO NOT TOUCH – as with our children, when we say please do not touch, what do they want to do? They want to touch (PEAP – therapeutic goal is to maximize awareness and orientation). Sam, shouting for help, wants to go home; seeing the ‘Exit’ sign may encourage this thought process.
Persons with dementia are constantly searching for meaning in their environment; they are drawn towards persons or things that will assist them to understand their reality. The goal is to keep the person connected with their reality; so why not have a real bouquet of flowers on the table rather than a picture (PEAP– therapeutic goal is to regulate and provide quality of stimulation)? As with Ingrid, she is trying to make sense of the world around her while snipping the sweet peas in her garden, persistence of a long–term memory.
Another major factor in our environment involves the people in it. As we were strolling through the SCU, I heard one of the professional care partners say in a loud, impatient voice, “Hurry up Florence, I already told you it’s your bath day” (PEAP– therapeutic goal is to support functional abilities). As depicted in the case study, Florence refuses to change her clothes; she has lived in an era where one simply did not change their clothes on a daily basis. Perhaps her care partner needs to communicate with Florence in a more respectful manner.
I later asked the clinician, “Is that care partner dementia friendly?”
As persons with dementia are constantly searching for meaning in their environment, it is absolutely critical that their care partners are communicating with them in a manner that is both orienting and friendly.
As in the case study, Mary is collecting briefs and towels from the cart (PEAP– therapeutic goal is to provide opportunity for personal control). This menial task allows Mary to exercise personal preference, choice and independent initiative to determine what she will do and when she will do it.
Naturally, transformation does not happen overnight. However, I toured this SCU setting a short thirty days later, and some major changes were evident every step along the way in Tick Tock Manor. I could actually feel the sense of calm.
The first thing I noted in the SCU was that the walls were now bare of pictures. And the old dark paint had been replaced with a very delicate eggshell colour. These simple modifications gave the illusion of making the hallway brighter and wider.
Secondly, I could see individuals sitting at one of the benches down the long corridor, gazing at the fish pond. As I came closer and introduced myself to Gerry, I witnessed a huge smile on his face as he was admiring the fish. “I like this,” smiled Gerry.
The bread maker was not in operation this day; however, the reports from the previous day was that the aroma of freshly baked bread was highly successful in comforting the person with dementia.
The clinician at Tick Tock Manor agrees that signage, such as ‘EXIT’ may possibly pose a problem for Sam and others who are wanting to go home. However, this environmental feature is critical in meeting the Fire and Safety regulations. Persons with dementia are always searching for home. But are they really searching for the place or are they searching for the feeling of comfort (de Geest, 2006)?
Following is an example of a highly successful communication, when Claudia, a care partner of Dorothy, engages with Dorothy in a dementia–friendly manner:
“Where is she, where is she? Did she go that way? I have to find her.” Dorothy is becoming agitated, searching for her sister (who presumably has been dead for over thirty years). Claudia responds in a friendly manner, “I saw her in the dining room. Let me help you Dorothy. My, that is a lovely neckline on you. All the girls are wearing that. It looks so sharp.” This strategy has charmed and distracted Dorothy for the moment. In fact, Dorothy replies, “Oh, do you really think so? Thank you.” She takes Claudia’s arm, and off they go to the dining room (PEAP– therapeutic goal focuses on attempts to preserve continuity between present and past environments and the self of past and present).
A puppy dog now lives at Tick Tock Manor; he merrily is romping up and down the hallways, stopping only briefly to sniff and visit with friends along the way. Elsie looks on, smiling.
Finally, it was evident that the atmosphere in general, was calm and relaxed. I engaged with one of the care partners working that day in SCU, and she reported,“I am amazed how much calmer the people are since these few changes were put in place.”
Professional Environmental Assessment Protocol Criteria (PEAP)
Maximize Safety And Security
Definition: The extent to which the environment both minimizes threats to residents’ safety and maximizes sense of security of residents, staff, and family members
Maximize Awareness And Orientation
Definition: The extent to which users (often staff and visitors as well as residents) can effectively orient themselves to physical, social, and temporal dimensions of the environment.
Support Functional Abilities
Definition: The extent to which the environment and the rules regarding the use of the environment support the practice or continued use of everyday skills. These skills can be divided into both activities of daily living (ambulation, grooming, bathing & toileting, eating) and independent activities of daily living, which will vary with stage of the disease.
Facilitation Of Social Contact
Definition: The extent to which the physical environment and rules governing its use support social contact and interaction among residents.
Provision Of Privacy
Definition: The extent to which input from (e.g. noise) and output to (e.g. confidential conversations) the larger environment are regulated.
Opportunities For Personal Control
Definition: The extent to which the physical environment and the rules governing the use of the environment provide residents with opportunities, consistent with level of acuity, for exercise of personal preference, choice, and independent initiative to determine what they will do and when it is done.
Regulation And Quality Of Stimulation
Definition: People with dementia have decreased ability to deal with potentially conflicting stimuli, and have greater difficulty distinguishing between foreground and background stimulation. Therefore the environment must be sensitive to both the “qualify” of stimulation, and its effective regulation. The goal, in Mace’s term, is “stimulation but not stress.”
Continuity Of The Self
Definition: This scale focuses on attempts to preserve continuity between present and past environments and the self of past and present. This can be expressed in two different ways: through presence of personal items belonging to the individual, and creation of a non–institutional ambiance.
de Geest, G. (2006). The Living Dementia Case–Study Approach. Trafford Publishing, Vancouver, BC
Weisman, G. Lawton, M.P., Calkins, M., Norris–Baker, L., & Sloane, P. (1996). Professional Environmental Assessment Protocol. Unpublished manuscript, University of Wisconsin–Milwaukee, Institute on Aging & Environment, Milwaukee
Gwendolyn deGeest RN,BSN,MA is the author of “Where am I?” She has been working in dementia care for over two decades and has witnessed the joys and sorrows of families struggling to maintain a quality of life for themselves and their loved ones. Gwendolyn’s thesis, “The Relation Between the Perceived Role of Family and the Behavior of the Person with Dementia” is published in the American Journal of Alzheimer’s Disease, May/June, 2003. This work was presented at The International Congress of Gerontology, Vancouver, Canada. Gwendolyn resides in Victoria, with her family where she is a professor.
Gwendolyn welcomes your questions/comments at gwendolyn@LivingDementia.com
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