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.
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.