Design for dementia: programs vs. special care units.

An Interview with noted long-term care designer and planner Lorraine G. Hiatt, PhD, President of Innovage, Inc., New York, NY. (Interviewer: Richard L. Peck, Editor)

Peck: In 25 years of visits to some 500 facilities, what have you observed regarding care of memory impaired persons?

Hiatt: A dramatic change has occurred in facilities' sense of responsibility regarding intervention and design to support it. In years past, it was sufficient to place schedules, clocks and mementos on a wall. That was the program. If an older person responded favorably or even attended a group in which these props were used, they were "in the program." If not, well...

Peck: What do responsible facilities do now?

Hiatt: In the 1980's, there was a trend toward setting up special units or designated places for people who were allegedly suffering from dementia. In fact, some of the special care units were places for admitting so-called "caregiving challenges". The numbers of people with dementia, perhaps half of a nursing home population, usually far exceeded the capacity of a particular unit. Sponsors and nurses varied widely in defining the target population.

In some cases, mildly impaired, but still agile and active persons were a target. This was particularly likely in facilities of over 100 beds. Given that wandering characterizes perhaps 10-15% of the population, the 300-bed facility could generate a 45-bed unit; the 100-bed facility might have a 10 to 15-bed unit.

In other cases, the dementia units housed people who had combined memory loss and fairly heavy ADL needs. On these units, we saw people with "flat" affect or who required two persons to help with transfer, hand feeding and nearly total care. The cognitive losses were profound; however, the presenting nursing needs suggested that the individuals required a very different activity and social context than the mildly-impaired group might.

Peck: Are these "light care, mildly confused" or "heavy care, highly confused people" the targets of care in the 90's?

Hiatt: In fact, we're beginning to apply the research to develop more sophisticated programs that respond to each of four subgroups:

1. Mildly impaired persons with light ADL needs;

2. Moderately impaired persons with moderate ADL needs;

3. Heavy care persons with light to profound memory losses;

4. Caregiving challenges: people with paradoxical needs, including those with poor judgment and high activity levels, or those who are not currently responsive in group participation situations. This may be a short-term designation while factors contributing to the behavioral anomalies are sorted out.

Peck: How can a facility of limited means accomplish a program for four sub-groups?

Hiatt: The sophisticated facility may shift its focus from unit-based interventions to program-focused interventions. The first step is to define "the program." Sit down with a team of staff (perhaps a Total Quality Management team) and develop a concept for each sub-group. What is nursing trying to accomplish in morning care? Are there elements of dining that might be worked into the program? What about activities -- are they different for each sup-group? What are the concerns of families? Of nighttime caregivers?

Peck: What are the design implications of a program? Does a program-concept for dementia care have environmental implications?

Hiatt: Memory impaired people need external cuing and reinforcements. Fragmented spatial arrangements (such as those leading to haphazard gathering along corridors) and multi-purpose rooms can often be confusing for both older people and their caregivers. What "activity" is truly evoked by a nondescript lounge?

Peck: Is there one design or set of criteria for planning or creating a "program room"?

Hiatt: A program room has several concepts and features. First, it is space that is planned to encourage exploration and responsiveness. The space is planned with evocative stimuli, i.e., both with individual objects and with combinations of space-object-furnishings that evoke behavior and activity.

Think of combinations of stimuli that create or support memory fragments of recollections. Around the home, the blended effect of a kitchen table, cooking food and its aroma, pots and cups, a particular window covering and utensils -- all create an image.

Or, consider the props provided by the dressing table, visibly hanging clothes, a chest with a display surface, with implements of grooming on it, may create a grooming vignette. A table with wooden objects, some half-sanded, others showing fine grain and workmanship, some as toys, others as treasure boxes, may also stimulate curiosity.

The program environment might incorporate a series of these vignettes. The purpose of these is to cue and evoke behavior. The "right" cues may grow from knowledge of the local people, culture, town, lifestyles and daily routines. In one location, a soda counter (low and easily used) may be more evocative than a dining room table. In another, musical instruments or office accoutrements may be more appropriate than homemaking or farm implements.

In fact, the space is not planned for one focal activity, but as a place where people are likely to be engaged in casual exploration -- some low-key guided exploration, as well as self-directed activity and energy outlets such as rocking, walking or pacing.

Peck: What kind of a facility might consider developing a program room of this type?

Hiatt: Facilities that are small, under 100 beds, may find that at any given time during the day there are only 12 people who are active. Rather than set up a special care unit, this facility may find a program room helps with therapeutic recreation, helps nursing assistants or volunteers to keep people focused. Meanwhile, nursing staff "back on the unit" may be able to better focus their attention on the complex care or more conventional interactions and activities of the people who are housed there.

Larger facilities may find a program center concept helps in the transition from one unit or level of complexity to another. Older facilities or buildings with little "on-unit" space may find the program concept serves their needs. Sometimes storerooms or less used areas can be converted (with windows, safe outside areas and new interior design and furnishings) to a very effective program room or suite.

Peck: How large is a program room? How are they furnished?

Hiatt: Generally, if they are a single room, they may be designed along the lines of a Montessori classroom. Program room area can be estimated at about a target of 50 net square feet per person and minimum of 28 net square feet (i.e., clear area) per person, at maximum capacity. In addition, there is the area designated for the "vignettes". Vignettes might range from music and grooming areas, to bathrooms and window seats. A small-to-average facility should anticipate accommodating about 20 people, tops, at a time. For more, a program suite-of-rooms might be necessary.

By the way, they should look terrific, making staff and families as well as residents feel good about intervention, about the possibilities for generating responsiveness and for supporting the behavior patterns and activity capabilities that the person has maintained.

Peck: How do program rooms work in today's more sophisticated facilities?

Hiatt: There are facilities that actually have several program rooms, one per floor or distributed throughout the facility. More sophisticated facilities might also look for program/design features that attract a mixed population or intergenerational visiting. In fact, a well-designed, free-form, interesting garden may become a "garden of memories" for people with memory impairments and their visitors.

Peck: What are some examples of nursing homes that have tried this?

Hiatt: Morningside House, Inc. in the Bronx has had special programs in special places for over five years. Theirs is run as an "in-house" day care center in a multi-purpose room space.

The Rosa Coplon facility of Buffalo, NY developed a first-stage program center in an underused activity room in the facility, coordinated by the Dementia Program Coordinator (now Administrator) Randi Dressel. It was a controversial effort in 1989. The program has expanded and matured, and is now part of the fiber of the organization.

Woodhaven, Inc. in Lumberton, NC has a dementia program room and garden that is co-licensed for both in-house and day-care clients.

At Casa de la Campanas in San Diego, an apartment residence for older people has been adapted. One apartment has been taken out of circulation and created as a program room. People come from apartment and assisted living accommodations for a variety of programs in a low-key, highly familiar space.

The Terrace Program at Bayley Place in Cincinnati has succeeded in converting a storage room into a mini-apartment and adding doors to separate a corridor for a mini-unit accommodating about 11 people, all of whom are able to maintain assisted living status with the service provided.

Greencroft, Inc. in Goshen, IN has developed two program rooms in its nursing facility. One is an "add-on" and renovation; the other is a part of new construction.

Peck: Any evidence that people benefit from such programs?

Hiatt: At St. Elizabeth's in Baltimore, Dr. Bill Russell and colleagues have documented improvements in dining, self-feeding and mobility related to more focused programs and design in these areas. At Rosa Coplon, initial results suggested improvements in continence, in staff's approach to continence, in mobility, in social behavior and, for some, in a sense of schedule (i.e., program anticipation).

Both programs, units and the combined effects of these warrant high-quality research. One such study is currently being conducted by M. Powell Lawton of the Philadelphia Geriatric Center and Gerald Weissman of the University of Wisconsin.

Peck: How might administrators get programs or units off the ground?

Hiatt: This involves working with staff to define the target population(s), leading staff through planning sessions or a workbook to devise the program, working with designers on the features and sizes, working with management on costs and financial implications, and working with interior designers on implementation of the space planning. One also often has to work with approval agencies related to innovative features and other implications regarding regulations or policies.

Peck: What suggestions would you have for a facility that cannot now find space for either a program room or a designated unit?

Hiatt: The organization can still sponsor a program. A dining program, a corridor and "memory lane", a "spa bather", and transformation of some corridor space for little seating vignettes may all be helpful. Several facilities have relocated large storage areas and created program rooms for these spaces. Also, some higher-functioning residents may be taken off special units to allow more space for programs for those who remain.

Years ago, Dr. Steven Zarit, a pioneer in dementia care and interventions commented, "Almost anything works for someone." I'm inclined to apply this concept to all of the people with memory loss. Have some plan. Do something. What you do can matter, if not in improving memory itself, often in improving overall physical well-being.