Terry Carson, the owner of residential facilities for people with dementia and Alzheimer’s disease is interviewed by Nancy Frishberg about his twenty years of working with this population. The needs of people with dementia are contrasted with those of frail elders in institutional settings. They include physical spaces with easy wayfinding (for people who are easily confused), ways to protect belongings from gatherers (people who collect objects for comfort), and activities to hold their attention. He describes strategies that staff members use to keep people who may be confused easily, or have limited attention spans, safe and comfortable. This includes details of interior and exterior space design, a wide variety of activities built into the environment and ways to calm residents who become agitated.
UX: How did you get into the business of providing residential care to people with Alzheimer’s disease and other dementias?
TC: My business partner and I purchased a thirty-three bed facility in Modesto, California in 1988, with a focus on people with a geriatric psychiatric diagnosis. During the first year of operation, we got lots of requests for housing for people with dementia.
At that time there were only twelve spaces for people with dementia in a city of 200,000, in a small unit within a larger facility for skilled nursing. I saw people who were heavily medicated as a method of managing their behavior. I was disappointed at the lack of specialized treatment, and thought we could do better. While we no longer own the Modesto facility, we now have three facilities in the San Francisco Bay area to house up to 150 people.
Facilities that mix people with dementia in with a general population of frail elderly often can’t afford the staffing to handle the needs of both groups. One way they manage the situation is by medicating the dementia patients or keeping them sedentary by other means. Some facilities strap dementia patients in wheelchairs to keep them from “getting into trouble.” Once otherwise able-bodied people with dementia are forcibly seated for even a few days, they can forget how to walk on their own.
Over the past twenty years, we have provided living spaces for people who have been diagnosed with dementia (including Alzheimer’s disease), who are otherwise generally healthy. The buildings and grounds are as much a part of the therapeutic environment as the staff, daily activities, schedules, and menus. Our residents come to us because they can no longer stay at home safely; they might wander away, or they might turn on the stove at night. We like to avoid using medication whenever possible, to allow residents to live with minimal restrictions and maximum safety.
UX: One of the hallmarks of dementia is confusion, in problem-solving or decision making. How do you manage that?
TC: It’s a familiar aphorism that “more caregivers die of dementia than the patients.” The caregiver spouse gets worn down emotionally and physically in the attempt to take care of a loved one who needs increasing supervision.
We create an environment where the person with dementia feels loved; our staff is trained to treat them with compassion, speak to them calmly, and redirect them, in case they show agitation or frustration. When Phil says “No, I don’t want to be shaved,” we try to honor that. And fifteen minutes later his whole demeanor may change; an invitation to shave may be better accepted. It may take two or three tries to complete the task, and we’ll just wipe the soap off his face, and take another try in a few minutes. We want a win-win: the caregiver has all their clients in shape, and the clients are looking good. Does Anna refuse to join the Wednesday morning watercolor group? Engage her in pouring water into the glasses for lunch, or if that’s beyond her capabilities, encourage her to take a walk for a few minutes and invite her back to the table.
We keep to a regular schedule. Everyone up, washed, dressed, groomed, and fed by 8:30 a.m. Activities keep them awake and busy during the day, with guests who offer music or tell stories or involve them in dance or exercise, and staff who supervise arts and crafts and sing-alongs. After the evening meal, and perhaps a quiet time with a familiar old movie or the birds, everyone gets into pajamas and goes to bed. Some of the residents still will wander the halls by night, but most stay asleep until the morning. We find that a regular schedule with many activities keeps everyone engaged and agitation at a minimum.
UX: How do you design your physical spaces to complement your approach?
TC: Our residents often have big visual-spatial deficits, and can’t track distances or two dimensional versus three dimensional patterns. We use vertical stripes for the wallpaper on the hallways, because it tricks the perceptual system into thinking that the hallway is not as long as it is. Vertical stripes keep the hall from looking like it’s fifty miles long. We use a solid colored carpet, which has less distraction for the residents. We tried patterns and speckles, but found them too busy. The residents get hung up; they might even get down on their knees and start to pick the specks.
We have wooden boxes on the walls that have easily recognized gadgets. One box has switches that light up simple shapes. Rods tethered to another box can be fitted into the holes on the box. Simple latches open to reveal photos; another has a variety of latches and locks. All these tools allow people to amuse themselves, as they’re passing through the hall. It breaks things up along a plain wall, and is more interactive than art. We have seating along the hallways, so that there’s never a need to walk more than fifty feet without an opportunity to sit or rest. At another facility, we’ve hung wool rugs with a texture to them. The residents love to walk by and touch. Those have been a success.
UX: People with dementia can’t always find their way home. How do you help them stay oriented and identify their own room?
TC: Rooms are marked by big numbers on the doors. The small plexi-glass cabinets outside each room are cues for wayfinding with a bit of personalization. A label introduces the residents in this room (name, hometown, interests) and family photos provide an opener for conversation. Some people are able to use the numbers or photos to identify where they are, and others can live here for three years, and still get lost. We keep all the rooms unlocked, because some of the people will explore random rooms all day long. However, the closets are kept locked. We’ve had too may occasions when gathering tendencies come out. For example, if someone’s having a day when they definitely want to go home, they’ll gather up all their things (and perhaps a few others’ as well), and sit by the front door with all their things around them.
UX: Even the toilets and showers are arranged for your residents. What are some of the issues, and how you have solved them?
TC: A part of the disease progression is the loss of control of bladder and bowel. About two-thirds of our residents wear adult diapers. As a result, all of our upholstered furniture has waterproof fabric. We can use a mild cleaner and soap to clean up any accident. If someone urinates on a traditional upholstered chair, you’ll never be able to get the smell out.
Showering is also a problem. Our residents might get in the shower with all their clothes on. Or once they’re in, they might not be able to regulate the water temperature or to get out by themselves. So, we have central shower rooms with as much staff assistance as each person needs.
We used to have hand towels in all the bathrooms. We found that it was impossible to maintain towels on the rack; our resident “gatherers” would go to each room, collect the towels, and hide them. Instead, we have paper towels with manual dispensers in the bathrooms. People have a hard time managing any automated or electronic dispensers.
UX: How about outdoors? Can residents go out on the grounds, or is that a safety concern for people who might wander off?
TC: Our facilities are in California, where the weather is moderate all year, so people can go outdoors any time. All the doors in this building allow access to the exterior without barriers, except the front door. Residents are free to wander in and out of the buildings throughout the grounds. Some of the residents are great walkers.
Each resident wears an electronic anklet or bracelet that sets off an audio alert when they go out the front door or outside gate and we have cameras focused on the sidewalks around the building, so we feel confident about their safety.
UX: Beyond safety issues, do you do anything special in your outdoor spaces?
TC: Besides our umbrella tables and chairs, and a gazebo on the lawn, we have a bench with a city bus sign next to it.
When some people first go into a facility, they can be very insistent about their desire to go home, especially in the first six weeks, the adjustment period. The staff may suggest they wait for the bus, and help them find the bus stop, saying “It will be here in about thirty minutes.” The bench is in a shaded area with a view of people passing between the main building and the activity building.
We also have a mailbox-just an ordinary household mailbox. Staff can leave messages for people who look for mail. People living with Alzheimer’s or other dementias are unlikely to hold the goal in their minds for thirty minutes, and will either wander away from the bus stop themselves, into the backyard or the activity building. They can also be invited to join a group activity, come to a meal or snack, or enjoy the birds. These are all methods of managing the residents without restricting their physical activities, and without resorting to medication.
UX: Birds? What kinds of birds or pets do you have?
TC: We have finches, chickens, doves and fish. We have a colony of finches near the front door, which provide constant activity for catching the attention of the residents. The chickens were all raised here, so they are accustomed to being handled. Everybody likes the chickens; many of our residents may have been raised with chickens in the yard.
We have a two-story dove house. Doves are durable; they amuse each other, they don’t require lots of care, and they can live outdoors year-round in this climate. Residents like watching the birds and listening to them cooing in the evening, while sitting on the patio. It’s like TV for our residents. An aquarium is soothing to the residents; we can use it to calm them. Sometimes when people are agitated, just bringing them to watch the fishes will help to calm them.
UX: I don’t see a lot of house plants.
TC: We wanted to include plants, as a way to bring the outside in and improve the environment. However we’ve found that we have difficulty maintaining plants. First, our gentlemen residents treat the pots as a urinal, which is not pleasant. Once they discover a pot in the hallway and make a decision about its function, it’s difficult to change their behavior.
Secondly, the residents are fascinated with plants, but not to the benefit of the plant: we bought ficus trees and residents picked off every leaf. We put some sago palms out near the bus stop, but residents picked them apart in just a day or two. We’d rather choose decor that meshes with the residents’ needs, instead of monitoring everyone to “not do that.”
Now we do have a gardening project where staff members supervise the residents with planting, weeding, and watering, raising vegetables or herbs or flowers. But I just noticed today that it’s time to replant some of those areas. Someone apparently uprooted a bunch of flowers; I’ve seen one person carry fifteen or twenty plants in their shirt. They’re out gathering.
UX: Was your approach a result of trial and error or adoption of well-known practices in the field?
TC: When we started twenty years ago, there were few facilities exclusively for dementia. We’ve experimented with a lot of ideas. When people say, “Your buildings are sparse,” I respond, “Perhaps, but they’re functional.” Unless we see the benefit of something, we probably will not add it. I generally subscribe to the idea that what is interesting to the residents and is something we can maintain is a good choice.