My presentation derives from the experience of two projects for which I was responsible, funded by the Canadian and Ontario govemments, which took place for five years in the Special Care Unit of the Jewish Home for the Aged. The unit is dedicated to the care of 86 residents with severe cognitive deficits resulting from irreversible brain damage, causing them to be confused, forgetful and disoriented, with considerable difficulty in speaking, understanding, and with a profound loss of words and function. Their average age is 84.7 years. Most suffer from Alzheimer's disease or a related disorder, or from multiple strokes.
What we learned about shaping the care environment to support the maximum function of these mentally impaired residents is described in our book "Institutional Care of the Mentally Impaired Elderly" that was translated into Japanese by Dr. Kazuo Hasegawa and Professor Hitoshi Asano, and published by the Kawashima Shoten Publishing Company, Tokyo.
In addition to their mental impairment, most Special Care residents suffer from accompanying illnesses and a range of physical disabilities. Many are in wheelchairs. Few have a steady gait. Some are practically helpless, unable to feed, dress or toilet themselves, and cannot by them-selves manage their daily living. They cannot find their way to the central dining room or go back to their room without getting lost and frightened. Most will not remember if they have had lunch; some have even forgotten their own names. Al-most all would be incontinent without nursing routines. They are unable physically. socially and emotionally to survive without help and they require constant supervision in a protective environment tailored to their needs.
Some residents display extreme agitation and restlessness; one woman endlessly paces the corridor back and forth to nowhere; another pulls the buttons from her sweater and counts out loud; another repeats automatically in her breathing "oy" "oy" and another pounds her fist in anger on the table. A man likes to collect little trinkets and takes them from other people's drawers into his pockets; another woman sits all day with her head and eyes downcast and refuses to budge, except for meals. Does this description of behavior fit some of your residents?
It is no wonder that mentally impaired per-sons are considered to be the most difficult residents to care for in an institution. Learning how to obtain the individual resident's cooperation in the daily tasks of living, such as dressing, bathing, eating is an ongoing challenge, and of-ten a struggle. But, there is a way of delivering personal care that is appropriate for each individual resident, and staff can be helped to find that way in which the resident can accept care being given. The key is in paying attention to the resident's feelings - in discerning the emotional need.

1. ABILITIES OPERATIVE WITHIN THE IMPAIRED PERSON

Despite the overwhelming losses and almost total dependency of a cognitively impaired person, social and emotional needs remain. The abilities remaining operative within the impaired person are:

(1) A fully intact emotional capacity. Fear, joy, excitement, pride, anxiety, sorrow, shame and sympathy are experienced, although their expression is not always understood.
(2) An awareness of the environment and a responsiveness to change within the environment, even if specific events are not accurately or fully comprehended.
(3) A sociability which demonstrates an ability to show concern for others.
(4) Social skills, which are retained even when there is tremendous loss in cognition. Practiced repeatedly throughout a lifetime, these have been incorporated into behavior and are available for use in appropriate situations, such as greetings and farewells, good wishes and congratulations.
(5) A way of communicating that, in the absence of verbal ability. has been developed in an individual and unique style through body language - with eyes, posture, and gestures, in the emotional quality of the voice, in the feelings with which words are spoken.
(6) An ability to make logical connections. which may not be readily apparent when the person's behavior seems irrational. Given the tendency to misconstrue the environment, what seems an illogical or irrelevant action can well be quite logically connected to the impaired person's perception.

2. UNDERSTANDINC THE MEANING OF BEHAVIOR ?

It was in trying to understand the behavior and feelings of our men-tally impaired residents. how they experienced their world that led us to understand what they required in the care situation to be able to function to the best of their abilities. When we tried to look at experience through their eyes, we realized that with their loss of recent memory and their disorientation, there really was not any clear time separations between any activities - program. meals, or routine of care. There was only a continuous frightening 24 hour total environment in which they struggled to understand and cope - and we began to hear their fear.
Since few could ask or tell us in words. we had to learn from their actions what they needed and wanted. When we began to understand the signals their actions provided, how really responsive their behavior was to events in the immediate environment, we began to realize that our prior perception had been faulty. There was meaning in the language of their behavior - in the tears, and screams and scratching and even the repetitive moaning that had been attributed to neurological brain dam-age. We began to understand this language in a new light.
Such behavior signalled discomfort and distress and changed in intensity and frequency with the person's feeling of comfort or stress. Many times staff learned to locate the source of distress, and in most cases, alleviate it so that the resident could be more relaxed.

ALL BEHAVIOR HAS MEANING, WHETHER WE UNDERSTAND IT OR NOT. IT SERVES A PURPOSE FOR THE INDIVIDUALS .

"There was a loud raucous screaming song from the bathing room. Mrs. Shore was being bathed. Her voice was get-ting louder and the words of the song she was hollering were vehement and angry and I could feel the outrage in her voice. For a deeply religious woman, the lyrics were completely out of character. I asked her why she was shouting this way. She looked at the male orderlies. Because she was a very heavy woman who had to be lifted in and out of the bath, it was necessary for two orderlies to assist the nursing aide. Suddenly, I knew what she meant. For a deeply religious woman to be undressed in front of a man was against all her personal rules of conduct, creating great shame and guilt. The words of the song had expressed her feelings about herself. 'Are you ashamed?' I asked. 'Yes' she said quietly. I asked the orderlies to leave. 'Mrs. Shore. I will make you a promise. We will never put you in the bath again naked, nor will you be naked when you are taken out. I will see to it that you are always covered in the presence of the orderlies who must lift you'. She stopped screaming. The nursing aide helped her wash and a dressing gown was put on before she was lifted from the bath. She has never screamed at bath time since then." (Edelson, J.S. and Lyons, W.H.: Institutional care of the mentally impaired elderly, New York, Van Nostrand and Reinhold Company, 1985)

3. NEED FOR REASSURANCE AND ORIENTATION

The anxiety of the cognitively impaired person, confused by not knowing where he is, can be felt as a tremendous fear and often as panic. Because he cannot remember, because his sense of time for recent events is impaired, the brain damaged resident sometimes not only does not know where he is, but he also does not know where be has been. He needs constant reassurance and help from staff to literally "bridge" from one place to another, from the program activity to the corridor or from the dining area back to the now unfamiliar day room. Sometimes, it all seems unfamiliar.
You can recognize the feelings of disorientation in the voice and anxious way residents.
sitting in the hall, will reach out to stop a passerby - "Please nurse, where am l?"
This need of impaired residents for reassurance from staff is constant - about where they are and what will be expected of them next. In order to reduce their level of anxiety so they really can use what they do know, they need to know that they can count on someone in the environment to tell them what they do not under-stand, and to remind them of what they need to know. They have to feel trust in and be able to rely on those who care for them, to feel that they do care and will help them do what they cannot do for themselves. What time is it? What meal is next?...and sometimes when satisfied, they will smile and say "If you say so".

4. EMOTIONAL MEMORY

Because they cannot rely on their memory, mentally impaired residents tend to rely on their feelings to interpret their experience. Communication is received at an emotional level. They may not remember the specific event, but they will retain their feeling about the experience. They also tend to express themselves in exaggerated metaphors.

"I saw Mr. Smith standing by his door. He was waving his arms and shouting "Help, he threw me on the floor!" I went to see what was the matter. I knew that if anyone had thrown Mr. Smith on the floor, he wouldn't be able to get up, but I knew something must have happened that made him so upset.

I asked "Who do you mean?" He pointed at the new orderly. I went into Mr. Smith's room and he motioned - "See, he threw me on the floor!"... There, on the bed was Mr. Smilh's dressing robe. The orderly was preparing to give Mr. Smith a bath and had taken his robe and clean clothes from the closet... I assured Mr. Smith that everything was going to be all right and that this young man was there to help him.
Later I spoke with the orderly and asked him what had happened that made Mr. Smilh so angry with him. He said he did not know, only that Mr. Smith started to shout at him when he took his clothes from the closet.... It was not until later, when I observed him preparing for Mr. Brown's bath, that I realized what had upset Mr. Smith. When the orderly took the bathrobe from the hanger he tossed it, so that it fell onto the bed. He had a good aim and it required a sweeping motion of his arm for it to land on the bed... Mr. Smith had been a tailor and he was very meticulous about his clothing. There was no doubt in my mind that Mr. Smith felt that handling his clothing in so rough a manner was as if it was a personal assault upon him. He felt insulted, as if no respect was paid him as a person."

(Edelson. J.S. and Lyons. W.H.: Institutional care of the mentally impaired elderly. New York, Van Nostrand and Reinhold Company. 1985).

We know that we cannot restore memory loss, or as yet, change the course of an organically based deteriorating disease, but as caregivers, we can reduce environmental stress, provide emotional support and pro-mote maximum function. We can shape the psychosocial environment of the care unit to respect the residents dignity and make life more bearable.

5. THE HUMAN CONNECTION

By reaching out to establish an emotional connection with the inner person hidden in the impairment, supportive staff relationships can provide the security. sense of control and sustenance the impaired resident needs to function in a bewildering environment. This human emotional dimension - in the relationships with people that assist or hinder the resident's feelings of security and identity - is the most important ingredient in the care environment.
The state of aloneness and isolation is a profound risk of mental impairment. Fragile self-esteem and shaky personal identity require continuous emotional nourishment, particularly for those who may have lost even remembering their own name.
It is the direct care nursing staff who are the most significant persons in the environment of the mentally impaired residents. By their input, attitudes and support, they can help him use his residual skills in daily living, no matter how minimal these may be, contribute to his emotional well-being and enhance his social response and social functioning. It is they upon whom the resident is deeply dependent for the human connection.