The program room: the low-cost "special" dementia care.

Special Care Units are effective but often expensive. Here is one nursing home's attempt to meet SCU goals on a more modest budget

Special care units for residents with Alzheimer's disease continue to spring up in long-term care facilities across the country. But despite this growing trend, not all nursing homes have the physical capabilities or the finances to jump on the SCU bandwagon.

Within the confines of these very real limitations, some facilities - out of necessity or by choice - are finding that they can meet the needs of their residents with dementia outside the SCU model. At the Jewish Geriatric Home, a 173-bed LTC facility in Cherry Hill, NJ, a day program called Safe Haven is doing just that: providing specialized care for residents with Alzheimer's and other dementias without a multi-million dollar SCU.

The idea for Safe Haven arose from a need for programs for a subset of our residents with dementia who were still able to participate in daily activities, yet required more individual attention than could realistically be provided in our regular activities program. Our primary objective was to maintain the highest possible level of functioning for the longest possible time. We hoped to accomplish this with a highly structured program of stimulating activities and individualized services within a safe, calming environment - all, of course, without major renovations or expense.

To that end, a 24 by 30 foot portion of our auditorium was sectioned off with floor-to-ceiling dividers, each with their own doors. The furnishings are simple: four tables, each of which seats four, and additional chairs for a semi-circular discussion area.

I was hired specifically to develop the program, with input from the nursing, social services and activities departments, and to run Safe Haven with the help of a full-time nursing assistant. In keeping with our residents' need for individualized attention, the maximum number of residents in the program room at any given time was set at 12.

In selecting our program participants, we target those residents who can still be directed but have apparent symptoms of Alzheimer's and other dementias. I work with our social worker, activities director, nurses and psychiatrist to identify those residents and to evaluate referrals we get from the nursing home staff.

A "Typical" Day

After several years of planning and discussion, Safe Haven opened its doors in July 1993. We have tried to make our days as full and as structured as possible, with each day scheduled down to the minute. But the very nature of our residents' dementias makes flexibility just as important as structure. What we can or cannot accomplish in any given day depends, in large part, on each resident's state of mind, actions and response to any number of external factors - from the behaviors of other group members to the weather.

That said, on what we might call a typical day, the nursing assistants bring the residents to the program room between 9:00 and 9:30 a.m., with residents and staff having coffee and tea and reading the newspaper until everyone arrives. The day begins with a morning discussion. I pass out name tags and we sit in a semi-circle, introduce ourselves and talk about how everyone is feeling. The residents tend to recognize the staff and, to some extent, one another, making comments such as "I know her" or "I've seen him before."

We orient the residents to time and place with a reminder of the date and a discussion about the weather, while writing this information on a date and weather board. The quality and length of the conversation that follows vary from day to day. Sometimes we have great conversations about the time of year and the memories the season elicits; on other days, it's nearly impossible to get anyone to utter a word.

Three days each week, our morning discussion is followed by a 30-minute exercise class led by our nursing assistant. On the other two days, our group is integrated into the general population for the "Arms in Motion" exercise class. We also take the group to special events attended by the rest of the facility's residents to make certain that none of our program participants feel they're being isolated or that they're missing out on something that other residents are enjoying.

After the exercise session, we have a structured activity led by an art therapist, activities specialist, or music specialist who each come in once a week. On other days, we do individual activities such as art projects, puzzles or word games, which are sometimes facilitated by volunteers.

After a great deal of discussion, we decided to have lunch brought into the program room to keep the residents together for mealtime and maintain the continuity of the program. Informal conversation over a meal is reminiscent of home and helps to create relationships. Music played during lunch tends to have a calming effect and we do our best to seat residents in a way that elicits conversation and prevents any personality dashes. We've found, for example, that seating someone with mild dementia next to someone much more severely impaired can be very disturbing to the more lucid resident.

After lunch, we take some time to read or just relax before ending the day with an afternoon activity. On Monday, the art therapist leads the group in a variety of "failure-free" art projects, the products of which cover the walls of the program room. On Tuesdays, we usually have a baking activity and on Wednesdays, volunteers lead some sort of recreational activity. Thursday afternoons are usually spent watching a movie and on Fridays, the Rabbi comes in to help the group observe the Sabbath. Some residents who are barely oriented to time and place can still remember the emotional impact, if not the words, of prayers learned during childhood. For those residents, these religious observances are one of the few links to their "former" selves and their families.

Throughout each day, the doors to the Safe Haven room remain unlocked so our residents can come and go on their own or with the assistance of a nurse's aide. This policy is in keeping with the program's commitment to maintain each resident's dignity by offering them as many choices as possible and by treating them as the adults they are.

Since the program began, many residents have come and gone, and every change alters the dynamics of the group. As dementia progresses, it is sometimes necessary to remove a resident from the program when his or her behavior becomes disruptive or upsetting to the other residents. But these decisions aren't made lightly and residents are removed only as a last resort.

We were recently faced with such a decision when a resident's behavior was extremely disturbing to the group, and to the programs we were attempting to conduct, over a period of several days. After our attempts at changing the behavior failed, we consulted with the facility's psychiatrist who tried to resolve the situation with a change in medications. It was only after this strategy failed, as well, that the resident was removed from the program. The next day, the atmosphere in the program room was considerably calmer and much more conducive to interaction and conversation.

Small Victories

Because Safe Haven was implemented with little renovation and a limited financial commitment, we have the luxury of being able to view these first few years as a pilot project to see if the program is actually needed and if it will meet the needs of our residents with dementia. Our evaluation is ongoing but the success of the program is evident to the staff, the residents' families and to the residents themselves.

At first glance, some of those successes may seem a bit subtle or difficult to quantify, when, in fact, they are actually quite significant to our residents' quality of life. A case in point: some residents who were unable to tell when they needed toileting assistance, or to ask for that assistance, are now able to do so and have been put on a toileting schedule.

Many residents, some of whom can't remember what happened the day before, do remember to come to the program room on their own, without prompting or assistance. Some of these residents may tell their nursing assistants they're going to work or to school, but they know they have somewhere to go each day and that they're going to a place that exists just for them.

Residents may not remember one anothers' names from one day to the next, but even so, a sort of bond and sense of belonging are formed among the group members; some even seek out one another's company after program hours. Many of the residents have become so accustomed to attending the program that they come during evenings and on weekends when Safe Haven is closed.

Our hope is that the cumulative effect of these small victories is a longer duration of higher functioning, improved quality of life and perhaps even a slowing of the degenerative effects of dementia. What we do know is that the program has added structure to the lives of its participants which, in turn, helps to reduce anxiety and make our group members feel safe and wanted.

Risa Adelsberg, MSW, is Program Coordinator for the Safe Haven program at the Jewish Geriatric Home, Cherry Hill, NJ.