Chapter 5
Dementia Facilities
Charles Silverman, AIA

Good afternoon. Today I'd like to share with you an experience I had about six years ago developing a dementia facility. But before I do that I want to reinforce something that Mrs. Noell said a few minutes ago, and that is, that changes come with aging. The following are some of the physical and chemical changes that occur in the aging process: tissue loss, that's lean body loss; loss of bone mass; loss of joint elasticity; loss of sweat gland functions; loss in renal systems; and loss in lung capacity. And in sensory loss there is loss in taste, loss in touch, loss in sight, in smell and in hearing. In chemical loss there's loss of water content, loss of oxygen to tissues, loss in digestion, and in hormonal and immune systems.
I wanted to emphasize some of these things because they're very important in determining how to develop a dementia unit. These losses make themselves known in several ways. For example, the loss of water content in tissues requires a large intake of fluids. At the same time the loss of muscle in the bladder and kidneys, compounded by kidney failure, causes a higher frequency of incontinence.
Hearing loss, which is fascinating to me because I've begun to suffer from hearing loss in the last five years, is exhibited in the psycho-acoustics of speech. Modern language developed with vowels providing an emphasis for speech so that when you say, "no," "no.....," "No!" you hear the emphasis on that word; the emphasis provides you with some contextual meaning. Consonants, on the other hand, provide information, and it's their high frequency sound that usually is associated with old age. These consonants and their high frequency sound cannot be heard in a nerve-damaged ear. Thus, when you ask a question of a person who is hard of hearing, "Do you have a dime?" the answer my be, "Yes, it's 10:30." So, you have to always pay attention to these issues. These are examples of issues to consider when developing a suitable environment for the elderly and especially dementia patients.
By the way, there's one thing I do take objection to, that Mrs. Noell showed. She spoke about soft seats and low sets and seats that are not firm. I would venture to say that with dementia patients, with whom a large amount of restraints often are used, it is better to use seats that are too soft and too low. Like a bean bag sofa which looks better; you don't have to restrain the patient but rather you make it more difficult for him/her to get up. This is food for thought, but it is an area where you have to digress and take what is not the causal and usual, and look at what is different.
Six years ago, in May of 1989, I was fortunate to participate in a workshop developed by the Massachusetts Alzheimer's Disease Research Center. It was sponsored by Massachusetts General Hospital, Harvard Medical School, and the Massachusetts Institute of Technology. The workshop was entitled, oddly enough, "Blueprint for a Specialized Alzheimer's Disease Nursing Home Care Program." That's a mouthful but it was a very intense session. Its goal was to develop a flexible concept for creating a research center to allow exploration into innovative methods and models that would extend our knowledge of care.
There were 13 of us; there were researchers, doctors, environmental psychologists, administrators, health care providers, and of course architects. We grappled with issues ranging from ethical considerations of care to preventing staff burnout. Staff burnout is an item that often is overlooked in discussing design and is very, very important. This approach was not unlike what Dr. Syme described, in his tribute to Roz Lindheim yesterday at lunch.
One thing was clear then, and it still holds true today; there is insufficient evidence to support definitive standards on quality of care for dementia patients. The fact is that what we did see were different approaches to the quality of care by groups of caregivers. In noting the successes and the failures it became apparent that there were difficulties in developing data that clearly demonstrated what works and what doesn't. The bottom line was the lack of a standardization of concepts and approaches, further compounded by the challenges faced in research and corresponding ethical dilemmas. The knowledge we have about Alzheimer's disease is primarily the result of experimental learning, organized and interpreted by trained observers. And that's all we have today in the area of research. There really isn't anything definitive developed in the last six years, in fact, in the last ten years.
From this we concluded that there is no one correct, or even best, approach to patient care. What did emerge was the need for a philosophy of care with clear programmatic goals and consistent application as it relates to patient, family, and staff needs. Now, the recommendations may apply to the care of all patients with chronic progressive dementia and, for purposes of this discussion, Alzheimer's disease and dementia are used interchangeably.
At first our group strongly believed that all patients should go through a diagnostic process to rule out treatable forms of dementia since this will have implications for the patient's treatment and care and goals. The philosophy of care that we developed was simply this: we differentiated the concepts of palliative and rehabilitative care. Palliative care, which is my primary focus here, minimizes stress that will eventually lead to behavioral acting out. This is accomplished by a management of problem behavior and from the perspective of the environment, reducing negative stimulation. Rehabilitative approaches, on the other hand, focus on improving the patient's functionality by minimizing disabilities attributable to life history, environment, personality variables, and emotional responses. Now, while both approaches are needed for an overall integrated program, we were in general agreement that rehabilitative care was better emphasized for the early and mid stages of a patient's development.
One thing I'd like to go back to, in terms of reemphasizing what happens in rehabilitative care, is a paper I gave on the elderly in a prison environment. Interesting. I'd like to digress here, just for a moment, to discuss what we discovered in aging populations in prisons. Genetics, socio-economic conditions, lifestyle, mental health, and access to social and medical services all contribute to the rate at which aging accelerates. In this you can see that rehabilitative care really has to do with a person's lifestyle.
As people go through the various stages of dementia there is a need to modify their program. The goals that we set up were very simple. The bottom line was to achieve an optimal quality of life. That was the overall goal. The group then reached consensus on the following goals which supported this overall goal:
· To ensure that the quality of care is patient-centered.
· To provide safety and security, and comfort and emotional support.
· To permit reasonable privacy.
· To provide access to appropriate activities and to medical care.
· To provide ongoing assessment of functional, medical and psychiatric status.
· To make appropriate modifications in the individual's care plan.
Behavioral management is the next issue. Before I get into showing some of these overheads, I want to talk about a number of things to make it clear in your minds what we were trying to achieve. The biggest challenge in providing care and managing problem behavior is recognizing that behaviors vary and change significantly during the progressive stages of Alzheimer's disease. However, behavior is also a form of communication; when you lose cognitive control, and the ability to write or to talk, then behavioral acting out is the only way to express your feelings. In acting out, the person may be expressing pain, hunger or emotional distress.
The common behavioral problems that were exhibited were wandering, agitation, depression, aggression, rummaging, apathy, withdrawal, sundowning (I'll explain that later), inappropriate sexual behavior, and catastrophic reactions. Not all of these behaviors are problems in themselves. For example, wandering could be one patient's means of releasing excess energy while for another it could lead to agitation and should be discouraged. These behaviors also can be more of a problem for other patients than for the patient exhibiting them. In fact, what you usually find is that within an institution some patients can't live with other patients; they can't perform within their environment. There are many different problems one comes across within the geriatric community, especially in relation to dementia.
In environmental management, while our group discussed behavioral interventionsdaily routines, toileting activities, etc.we focused on a holistic approach recognizing that every area of patient management and provision of care was essential to the goals we had set forth. But we were convinced that the physical environment was important to the quality of care of dementia patients. Environmental management techniques can promote safety and enhance a feeling of security and emotional well-being. When we are able to minimize the challenges that a cognitively impaired patient faces and reduce environmental distractions, the patient will have more energy to direct towards his/her cognitive functions. Also I believe personally, that we can remove environmental constraints; this will allow staff to function more efficiently in carrying out their mission, and in promoting an environment to reduce staff burnout.
The key to environmental management is to control stimulation. This does not mean to eliminate stimulationyou can't eliminate all of it and, in fact, some of it is goodbut, rather, to reduce the negative effects of stimulation while providing appropriate, positive stimulation to enhance the patient's optimal functioning. For example, a TV set turned on during mealtime, or a heavily patterned tablecloth which has a lot of distractions on it, can inhibit a patient's ability to concentrate on eating. Loud noises, like intercoms, can frighten a patient and contribute to unacceptable behavior.
Someone in our group suggested the phrase, "prosthetic environments." This was based on a experience similar to one I encountered at the Hebrew Home for the Aged's Alzheimer's unit in the mid-seventies. In converting the health-related facility into an Alzheimer's unit we were seeking visual clues and color-coding to help compensate the patient's cognitive deficits. This was an existing facility, and we really weren't spending very much money on it, but what we did was change things around like lowering the nursing station, cutting off the top half, so it was more user-friendly. Meeting the prospective residents was helpful; we discovered that one gentleman, for example, was an avid card player in his lifetime and one woman was a talented pianist until Alzheimer's disease impaired her abilities. So as symbols of their lives, we painted a royal flush and a keyboard with musical symbols on their respective doors rather than door numbers which can be confusing to the cognitively impaired. Color coding of bedrooms and common areas is helpful to the residents in finding one's way. However, wall coverings and fabrics with prints sometimes can be confusing to the cognitively impaired. Striped carpeting can be perceived as a tripping hazard; this also is true for non-cognitively impared older people who have diminished depth perception.
We went around in circles on color choices; we didn't agree on them; they ranged from bright to soft muted. However we did agree that color was essential in distinguishing and locating spaces. We also agreed that an optimal size for an Alzheimer's unit was between 20 and 25 residents in a self-contained area. It was noted that larger units made observation of patients by staff more difficult. Also the greater the number of patients, the higher the agitation level. There was a greater propensity to use chemical restraints in large units and the incidence of falling increased. But we did not reach a conclusion about the optimal number of patients in a bedroom. Some administrators suggested that two residents in a room was ideal. However, some patients cannot tolerate a roommate and others derive comfort and security from sharing.
The ultimate goal of all these discussions was to design a specialized Alzheimer's disease nursing home that would be a model for continuing research in the area of dementia. By the way, let me say that they never built this facility but it was worthy of the try, I must admit. Although we didn't quite arrive at a design, in the days remaining for the workshop, we were able to develop concepts that provided possible solutions. As designers we were faced with creating what Hall, Kurshling and Todd refer to as "sheltered freedom" which allows residents a degree of freedom and dignity within the bounds of a safe and protective environment.
I really think that is probably the essence of all of this, to provide freedom and dignity. We knew that in Alzheimer's disease, or any kind of progressive cognitive chronic disease, there is a point at which quality of care for the patient becomes meaningful because of severe cognitive disability. However, we felt that dignity of life, and the maintenance of that dignity, was still very important.
At the Riverside Nursing Home in the Bronx, where I was involved with the design, we created the concept of front stoops where residents could sit and watch the day's activities. While this appears to be a passive activity, the concept was to encourage participation and communication with staff and passersby. We discovered that certain corridors, having a high degree of staff activity, were aptly named Fifth Avenue and Times Square by residents and the staff alike. We realized then that by an accident of design we had developed a main street and town square where residents could enjoy the community with others. Thus in our workshop we looked at the concept of a nursing home as a small community with residential households which were resident rooms; and with neighborhoods which were resident wings of 20-24 beds, and with main street activity centers.
Let me show you some of the ideas that we came up with. Here we were able to provide, you can see here, six bedrooms. There could be five, there could be four. There could be, certainly, a lot less but in this macro-cluster we were providing a living front porch, staff kitchenette, dining areas, decentralized utilities, bathrooms, and basically a wandering pattern all around here so that people could wander or, in the evening, sun-down. This was the beginning concept which gave us this residential housing cluster.
We then followed with an idea whereby these four to six bed clusters were all surrounding a staff activity, an outdoor activity area and a path which allowed wandering through these areas, coming back again to the same door where they entered. There were non-poisonous shrubs and other foliage around there. Then there was a primary circulation pattern which was called Main Street. So, you had the four to six bed cluster and, if you recall, it had dining and activities. And then bring this up to a whole series of stages where we now have staff activities and support. And then, finally, to the macro of what could be done at this facility.
Also, it's important to remember that this was going to be a fairly large facility; it wasn't our ideal of 24 beds but many more. There's the outdoor area where they can wander through and circulate and then right through here was a main street with service support. And in the main street we could have an ice cream parlor. Don't forget that in Alzheimer's, or progressive stages of chronic dementia, there are periods of lucidity. There are periods where people have cognitive control. Therefore we felt that a lot could be provided within an institution. In fact in Massachusetts where we did this, this was in Boston, they even have a tavern because in Massachusetts the residents are allowed a medicinal tot of a drink. They can have scotch, beer, whatever they like.
We talked about the clinic's activities, aquariums, zoo (when I say "zoo" I mean domestic animals, these are not wild animals), aviary. In Riverdale we were able to build a very large cage and a very large aquarium for fish and for birds. In fact, we had a problem in the beginning because the birds were getting pulmonary pneumonia and dying on us. We found out they were put in a path where there was a draft. We took care of that very quickly. There was a nursery; there were gardens and dance halls. So you can see this was the concept that we were trying to provide that would help us in what we envisioned.
It also was envisioned that each residential household cluster would be a research center for discovering what works, measuring it against the results of other clusters. So one cluster might have more people with advanced Alzheimer's or other diseases and others would have people with less advanced diseases. The clusters would allow for congregating residents in various stages of dementia and with varying ability to perform activities. Most important, we saw this idea as a means of deinstitutionalizing the nursing home and of providing an environment that encouraged participation and activity. We believed, too, that the smaller more manageable units allowed better help by staff and afforded a higher, more individualized quality of care, possibly reducing staff burnout. And, finally, we believed that the feeling of a normative community in a non-institutional setting would encourage friends and family to visit, further enhancing the residents' well-being and assuring the families that their loved ones were living with the care and dignity they deserved. Thank you.

Questions and Answers

Audience: Do you know approximately the gross square footage for that plan?
Silverman: No, but I could calculate it. We had three days of this workshop and the first two days were so involved in just talking with the administrators and everybody that we never even got to the design. We only did the design in the last day of the workshop. I grant you that this was probably a high-end square footage. Remember, this was an Alzheimer's disease nursing home but it had a research center attached to it and the whole idea was to try to examine these patients in the various settings, and various types of programs they might be involved in, to give some clue as to how we could better work with them.
Audience: Were all the patients ambulatory?
Silverman: No. Some patients would be, say, in the third stage of Alzheimer's; they would be confined in a bed. You know, one of the things we talked about, too, was why not put them in a ward? Why not put them in a ward and strap them down and keep them out of sight? We dealt with this and it was very difficult. We decided that for the benefit of the patient and the family that it was best to provide them with as much freedom as possible, so we decided that what we would do was keep them in individual rooms or in a room with two or three people. But, no, they were not all ambulatory.
Audience: Was the floor covering soft or tile?
Silverman: The areas involved were primarily going to be carpeted. There were soft areas. There would be appropriate areas where tile would be used in the dining room and in utility spaces but by and large corridors and other activity areas would all be carpeted. At least that was the sense of it; if this ever got built it might have been that we put tile down in a certain area to see how that worked. It really was to develop a research center.
Audience: Was there any consideration of daycare?
Silverman: No. This was going to be just community living and no daycare. Although, I must say, a wing could have been added on or one of them modified for a daycare center.
Audience: With regard to your comment on bean bag chairs, were you thinking of that as a restraint?
Silverman: Yes, I was.
Audience: I saw a woman in one Alzheimer's facility who struggled for ten minutes trying to get out of a chair. There was nothing dignified about it; she ended up in tears because of her frustration. To me, it was ethically so wrong because the only reason they did it was because they didn't have a proper area for her to wander in safely.
Silverman: You know, but then the alternative is restraints.
Audience: The alternative is proper design. You don't take a facility that doesn't have a proper area to wander and then say, "I wanted to dignify a human being regardless of their state." I mean, the problem is with the design and not the person.
Audience: Can I make a comment about that? The design is part of the problem but it's not all of the problem and one of the ways to restrain people with lack of restraints, which are probably frightening in this case being addressed, is properly trained staff.
Audience: If we use a beanbag chair for restraints we would be reported to the ombudsman. I mean, that's illegal.
Audience: There is quite a bit of research in the area of Alzheimer's that's actually being done under the auspices of N.I.H.'s Institute on Aging. Most of it is in the third and fourth year and I think probably within the next year, or year and a half, you're going to see the results of some of these things coming out. There's a good bit of work going on about circadian rhythms and sleep patterns, as well as some of the environmental interventions that we talked about here. The results for the most part are not published right now but I think probably within the next year they will be.
Audience: What I found to be very interesting about the design was that it almost represented a mini-city. It was interesting. I attended a conference last month at the CDC in Atlanta and there was a presentation by a person from Kaiser. He was making the point that Kaiser is now beginning to look at their managed care population basically as a community. I guess in both instances there are advantages to using that model in thinking of your population.
Silverman: This was something that just allowed us to stretch our thoughts; it was nothing more than that. Actually what they had in the back of their minds was they had hired an architect to design this facility but somehow along the line it died in the process but that was the beginning of the thought for a model community.
Audience: Could you give us a sense of what the outdoors should be like? You talked a lot about what the interior should be like but what should the exterior be like?
Silverman: We never got to that point. I think that if anything else it would just be absolutely user-friendly. There is nothing like institutionalized architecture that can be dreary and upsetting. And don't forget these patients do go outside, there is outside activity for them. I would think that a type of exterior design would be one that would be normative and could be carefully done without any type of heavy-handedness in the design. But we didn't come to that, we had no idea what the exterior would be.
Audience: Relative to the outdoors, I think it's important to provide seating so that as they walk they're encouraged to sit occasionally. And also to provide filtered sunlight, with leafy trees or awnings, to cut down some of the brightness so they can be outside but be protected from the bright ness. Also, white pavement is bad for glare because, again, you've got sunlight coming down and bouncing off the white surface into the eyes.
Silverman: As I said earlier, one of the ideas was to use non-poisonous plants. People often forget that different types of foliage are toxic. One of the fun things that we were able to do, not in this case but I've designed it in other Alzheimer's units, is create a wandering path through the facility. They go out one door and come in another but they never leave the institution and that gets to be whimsical. I mean, you just make it as fun and amusing as possible.