Alzheimer's care: Accentuating the positive. (Feature Article).

BASED ON AN INTERVIEW WITH JOYCE SIMARD, MSW 

The gift of life...is no less beautiful when it is accompanied by illness or weakness... mental or physical handicaps, loneliness or old age. Indeed, at these times, human life gains extra splendor, as it requires our special care, concern and reverence.

-- Terence Cardinal Cooke (1920-2000)

Archbishop of New York 

In any discussion about Alzheimer's disease, the subject of loss is bound to come up--lost memories, lost independence, lost ability to recognize loved ones, lost dignity. This disease has been referred to as "the long goodbye," "the curse of forgetfulness," "losing one's mind one brain cell at a time" and "a thief and a heartbreaker."

While these phrases vividly describe the prognosis for those stricken by dementia, that's only part of the story: While they yet live, people with Alzheimer's and other dementias can still enjoy interacting with others and participating in activities that awaken pleasant, comforting memories. According to geriatrics expert Joyce Simard, who has spent more than 20 years in long-term care and who as a consultant helps organizations implement or improve their Alzheimer's care and memory-enhancement programming, the news about Alzheimer's and related dementias is not all grim.

Simard says that although a cure has not yet been found, the good news is that researchers have identified ways to reduce risk factors for developing Alzheimer's disease, such as keeping blood pressure and cholesterol levels within normal limits, exercising and eating properly. And for individuals who have already developed the disease, recent research strongly supports approaches that enhance quality of life.

Simard says, "In July I attended the 8th International Conference on Alzheimer's Disease and Related Disorders in Stockholm, which brought together 3,700 scientists from 78 countries. Some of the most exciting research presented at the meeting was on brain exercises, once again confirming the old 'use it or lose it' adage. This has great implications for the importance of keeping residents engaged in meaningful activities."

Socialization is another essential element to good care, according to the researchers' findings, Simard says, emphasizing that this finding is another reason that activities are so important: "Research has shown that those who socialize have fewer problems with memory than those who are isolated, such as residents who stay in their rooms. We need to stimulate residents to want to be engaged in programming by providing activities that are meaningful to them.

"By my definition," she explains, "meaningful activities are activities residents can engage in that produce a positive result for them, either by making them feel they've done something well or by simply making them laugh, such as improvisational role-playing for the sheer fun of it.

"For giving residents a sense of accomplishment, tasks that specifically suit the individual resident are particularly successful. For example, in one community, we had a former car salesman who was frequently ordering people around because he had a staff during his career. We obtained some car brochures and order forms from the dealership where he had been employed, and when he wanted to 'work,' someone sat down with him and role-played 'buying' a car. It was satisfying for him."

Simard points out that such activities don't have to cost anything but can make a big difference for residents. For example, she says that at one community, staff members bring in all their junk mail from home. Residents who were formerly secretaries enjoy sorting this "mail" and stamping the envelopes with a PAID stamp, etc.

"We had a retired physician in one community," Simard recalls. "We put a lab coat on him and dummied up a patient chart for him. He wrote some extremely poignant comments in the 'chart,' noting that 'the patient was smiling' and 'seemed to be doing very well' and 'can go home soon.'" She adds with a laugh, "Obviously we didn't allow him to do surgery, and his notes were less clinical than they'd been when he was actually in practice, but it was a meaningful activity for him and made him happy.

"We also worked with a resident who had been in Elvis Presley's band. Whenever music groups came to entertain, we gave him his guitar and let him strum along. This made him feel respected, because he was part of the musical group."

Simard stresses not only the importance of individualizing activities but also of being creative when coming up with things for residents to do: "A police officer can be given a clipboard and a piece of paper with the numbers of all the rooms printed on it, so that he can check the room numbers as part of a 'security detail.' Teachers can be given activities that simulate being in the classroom. The possibilities are limited only by our imagination."

In addition to urging long-term care staff to get to know residents with dementia, so that they can devise ways to engage them in activities and programming, Simard conducts in-services to help staff become more sensitive to the special needs of this population. She notes that in-services are invaluable because they fill the gaps in orientation and education created by the high staff turnover so many organizations face.

Once basic Alzheimer's education has been covered, including an overview of the disease, typical behaviors, etc., she asks each staff person at an in-service to define "quality of life."

"I often get the same answers: 'family,' 'freedom to go places,' 'love,' 'affection,' 'freedom to eat what I want,' 'dignity,"' she says. "I tell them that residents are not much different in their desires and ask them, 'How can you make that happen for the residents?' We write these quality-of-life words on a piece of newsprint and use them to develop a mission statement," she explains. "We run this by the staff and then have it printed and matted. All the staff sign the matting, and then the mission statement is framed and hung on the wall in the Alzheimer's Program area, as a reminder of why they're there. It's been very powerful."

Another effective device for in-services is role-playing. Sometimes Simard plays the resident and staff members play themselves. At other times they play residents and she plays the staff member.

In addition to the regular in-services, Simard also conducts informal "mini" in-services. She explains the reasoning behind these: "Sometimes it's hard to find the time for in-services--there aren't enough staff, you can't free up the staff, there are issues with overtime, or it's hard to work around the different shifts--so you tend to put them off. To overcome these obstacles, we do informal sessions as the need arises.

"For example, we might have a particularly challenging resident who seems to have sexual issues. We can pull the available staff together and discuss sexuality and the various approaches to dealing with it. We can ask questions such as, 'Is he really just feeling hot because the room temperature is too high? Is he cold? If so, maybe it's not sexual behavior he's exhibiting at all, but merely an attempt to get cool or warm. Doing these impromptu sessions with actual problems the staff are encountering is much more effective than simply lecturing them about 'typical behavior.'

"Sometimes during basic Alzheimer s disease education, residents wander in and out; sometimes they stay, and we allow them to do so. Although the material is clearly over their heads, they don't seem to care, and they enjoy being part of 'a meeting.'"

Simard emphasizes the importance of listening to suggestions staff members offer during in-services or at other times, and then acting on their ideas: "For example, in one program we were discussing ADLs. It was in a veterans' community with mostly male residents. Staff were concerned that residents weren't being shaved daily and, responding to one of my ongoing themes--that everything can be an activity--a staff member said, 'We need a barbershop.' I asked, 'Where can we do that?'

"It turned out that there was an empty resident room, so I went to the administrator that day and got permission to use it as a barbershop. Miraculously, someone found an old barber chair in the basement. We added an old-fashioned radio, a paper towel rack converted with red tape into a barber pole, chairs for men who were waiting for their shaves and some men's magazines. We created a picture of a barbershop and laminated it, to hang on the door when the 'barbershop' was open. This improved grooming amazingly and provided a meaningful activity, as well. While one man is being shaved, two more can sit and wait while looking at the magazines. It's something that engages the residents in a familiar way."

According to Simard, in addition to ongoing activities, every successful Alzheimer's/dementia program has several key elements. First, the program needs a director, someone who is in charge and responsible for all aspects of care and who can serve as a contact person for families. She says that families must be counted as members of their loved ones care team: "They're as important as the resident and, in fact, sometimes have more stress and a heavier burden than the person with dementia."

The program also needs staff who are working with residents with dementia and memory loss because they want to and who have been educated in Alzheimer's care, she says--not simply because they're arbitrarily assigned to do so or simply "floated" from area to area.

Another key to a successful program, Simard says, is that the activities be ongoing, meaning throughout all waking hours. She explains, "We showed the benefits of this approach in an Alzheimer's care center at a skilled nursing facility in Vermont. By providing ongoing activities, we were able to decrease the use of psychotropic medications, reduce resident isolation and prevent weight loss. Residents need something to do, a role. It might be something as simple as holding the flag during the Pledge of Allegiance or reading a morning meditation or helping to make coffee--whatever they can do at their level of functioning. Remember, everything can be an activity."

Some activities develop spontaneously. Simard recalls one community that found a unique way to get residents in its Alzheimer's care center to go outside--a common challenge for those working with this population. She says, "Although the community had an enclosed courtyard that was quite small, the activities professional planted a garden there. One resident made it her job to water the plants. She really got into it and would put on her bathing suit to do it. Once some other residents came out and she squirted them with the hose. There was much hooting and laughter, and they all loved it and came to expect it every time she watered the garden."

Another essential in a successful program is an environment that has been specially designed to help people with memory loss manage their lives. Overhead pages are not a good option, for example. "If you had dementia and heard a voice coming from the ceiling, how confusing would that be?" she asks.

Lighting and light reflection are also important to the environment. Simard says, "I still visit lots of nursing homes where clean means shiny---the shinier the better--even though we know that shiny floors are a problem for anyone with diminished cognitive function or vision. And too often the rooms don't look like what they're supposed to be--for instance, no pillows or rocking chairs or other comfortable chairs in the living room, and resident rooms that look like hospital rooms. Country kitchens are an inexpensive way to add to the feeling of home for residents. People are comfortable in the kitchen; it's the most popular room in a home, and you can create a country kitchen with just a little money. It's great to have something baking in the oven, and for residents to help in the preparation. There are ways to secure stoves and ovens so that they are safe, and of course a staff person should always be present during a baking activity. Never have I had a resident burned or harmed, and the fragrance of muff ins baking and other kitchen smells are comforting."

Also regarding the environment, Simard addresses bathing areas: "Putting residents with dementia in a chair, lifting them into the air naked and setting them in a tub with lots of dials and faucets is very frightening, but it happens all too often in typical nursing homes. Bathing rooms need to be designed with a 'warmer,' so that residents can undress there without getting cold, instead of being taken there wrapped in a blanket. There should be soft music and a bathtub that resembles a home tub. Residents should be allowed to test the water and tell staff if it's okay. When staff members know the residents, reminiscing about their lives can help to make bathing another activity."

When asked how quality of care can be increased without placing excessive demands on staff or requiring increased staffing, Simard says, "I believe that the resident care assistants--RAs, CNAs, L(N)As, whatever each organization calls them--need to be educated to understand that they need to use a holistic approach. In other words, there's more to quality of life than keeping people dry and fed. It's about engaging them. When these staff members--when all staff members in a community--engage residents in conversation and meaningful activities as part of ADLs, you're not adding staff but providing a higher level of care through the best utilization of staff.

"In the program I described in which there were ongoing activities through-out the day, we found that it was easier to hire activities professionals than nursing staff or CNAs. On days when nursing staff was short, the ongoing activities program kept residents engaged. The nursing staff say they don't know what they would have done on those shorthanded days without the ongoing activities program."

Simard emphasizes that it's not just the nursing and activities staff who play a key role in engaging residents, but all staff. She says, "In a typical community, when the activities director tries to gather together residents for a planned activity, when she leaves the room to go get more of them, five leave with her. Residents with dementia usually can't self-initiate activities, but if the entire staff understands that everyone can help bring people to the room, that problem is solved.

"You need input from all disciplines to provide quality care for residents with dementia. Maintenance and housekeeping should have input regarding the safety of the environment for the Alzheimer's program. Nursing contributes resident assessments, in addition to day-to-day care. Food services can give advice on foods that are easy to eat and snacks that are nutritious and can be offered several times a day. They can also help enable residents to participate in making food. For example, instead of bringing toast to the dining room that isn't eaten until 30 minutes or an hour after it's been made, you can have toasters in the dining room. Residents can spread their own butter and jam. You can make meals an occasion--another activity."

Communication is also vitally important to running a successful Alzheimer's program. Simard emphasizes that it's important to remember to communicate to all three shifts whenever a new program is being started.

Having ample opportunities to interact with others and participate in activities also greatly reduces the difficult behaviors often associated with dementia, Simard says. "I hardly ever talk about 'problem behaviors.' For example, although elopement is a potential problem, wandering really is not; it's an opportunity for exercise. And rummaging is, in these residents' minds, merely shopping. So if you give them safe places to wander and opportunities to 'shop,' these behaviors aren't problematic. The problems arise when they have no one to engage them.

"Another factor that affects behavior is staff education. How staff members approach and relate to residents makes all the difference in the world. The bottom line is that when residents are busy, when they're in a comfortable environment and when they're with people who are smiling, singing and happy, extreme behavior, such as violence, is rare. It does occur occasionally, and of course the staff needs to be educated in how to deal with it properly. We also have at our disposal medications that can help manage these episodes if behavioral approaches don't work."

Also regarding medications, Simard says that research presented in Stockholm showed that the acetylcholinesterase inhibitors on the market, such as Aricept (donepezil), do work. "Although they aren't curative," she says, "they do seem to delay progression of Alzheimer's disease. Dramatic results are seen occasionally; more often residents receiving these drugs exhibit what their families describe as an increased alertness, or 'awakening.' These drugs are associated with very few side effects, and at least they're giving people a chance at improving their memory. These are tools we never had before. In the long-term care setting, sometimes families are not informed by physicians that these medications are even a possibility for their loved ones, so it's important in our health and wellness departments to educate families and residents to ask about them," she says.

"We want to give residents with dementia every chance at the best possible quality of life," Simard says emphatically. "There are so many positives that these people retain in spite of the dementia: They're loving; they have a sense of humor. Well into the disease process they usually can still walk and communicate and sing and eat. We know all too well about the tragedy of the disease, but it's time we focused on the strengths that remain. Their golden years should be golden."

Joyce Simard, MSW, is a geriatrics and Alzheimer's consultant based in Billerica, Mass. She is currently designing and developing programs for residents with early Alzheimer's disease and mild cognitive impairment, the "in-betweeners" who don't need the full security of an Alzheimer's program but need more help than is typically found in an assisted Living setting. She hopes that providing continuous and structured programming for these people will help delay progression of the disease. For more information, phone [phone] or e-mail [e-mail]. To comment on this article, e-mail [e-mail].