Activities "Plus" Improve Alzheimer's Care.

This facility brought new concepts of staffing and activities to care for residents with moderate dementia--and got results

Imagine being in a large room with 40 or so people who are wandering, talking to themselves or talking gibberish, yelling, crying, staring into space or sleeping. Some are looking for their parents; some ask how to get home; one person, who appears to be lost, is repeatedly hollering for the nurse; and some are clustered in reclining chairs around the nurses' station. One resident keeps trying to stand up and sets off a chair alarm, while another is startled by the overhead page.

The television is on. Nursing staff is in and out of the dayroom, glancing around to ensure everyone is safe, telling residents to "sit down," taking some to the bathroom, passing medication or just observing. An activities aide is trying to hold the attention of a few residents who can cut and paste decorations for the unit. Other residents are sitting at tables with unopened magazines in front of them.

This is a typical dementia unit.

To people with Alzheimer's dementia, such a setting is overstimulating and chaotic. It appears as if no one is in charge. They are in a room full of strangers and have no idea what they are supposed to do or where they are supposed to go. Their facial expressions convey bewilderment and fear.

It is no wonder that some residents demand to go home. Staffmight respond by saying, "This is your home; you live here now," and never address the underlying issue: At home they had something useful to do, they knew who was in charge, and they felt safe.

Traditional activities are usually scheduled at different times throughout the day. While activities provide structure to the day for some residents, the primary objective of activities is to have the activity, to complete the task, not to develop meaningful relationships with the residents. The main point is lost here because the activities are not based on resident need; they exist by regulation. So what do residents need?

Residents need structure. Everybody needs structure--kids, adults, adults with Alzheimer's dementia. Without structure, people become anxious, and when anxious, they attempt to create their own structure, or they behave in such a way that someone else creates the structure for them. So why do we seem surprised when residents with dementia become aggressive, resistant, combative or downright ornery?

This is the single most important fact that led to the development of the Aspire Club, a daily structured program for 25 residents on a 44-bed dementia unit at the Episcopal Church Home in Buffalo, New York. The "structure" in the Aspire Club is provided by small group interactions that usually change every half-hour, or when the leader senses that the group's attention is waning.

The New York State Department of Health's Dementia Grants Program has funded this program for two years. The facility contributes the space, the residents, the equipment and the program administration, and the grant reimburses personnel costs. In order for this program to continue, the facility will need to modify staffing and the unit routine, with little additional cost.

So far we have learned that for the small group program to be successful, the staff-to-resident ratio should be 1:8 and should include social workers, nursing assistants and activity aides. There are creative ways to staff a small group program, depending on the number of residents and their cognitive/functional levels. This program addresses a midstage dementia population. (Another daily structured program of early-stage residents, which runs parallel to this program off the unit, has a staff-to-resident ratio of 1:7.)

Another integral part of this program is staffs ability to convey consistent positive regard and emotional support. For the resident with Alzheimer's dementia, consistent positive regard and emotional support are necessary for survival. Take away the opportunity for these needs to be met, and you have set the stage for an emotional crisis and the withdrawal and depression that follow.

People with Alzheimer's dementia sense what's wrong more than they understand what's wrong. When they sense that a staff member is angry or upset, they are terrified because they don't know why the person is upset and they don't know what the person is capable of doing. Because memory is lost, people are perceived as unpredictable, and perhaps dangerous, strangers. When staff ignore their attempts to communicate, or do not take the time to try to understand their language, they feel rejection over and over. It becomes easier to stop trying, to stop asking, to stop interacting.

The Aspire Club offers emotional support. Emotional support means that the staff is always responsive to the residents' needs, they take time to listen, and they provide physical contact, like hugs and holding hands. Staff members use gentle touches as aids to communication and as reassurances that someone is present and listening. Involved in this are three core staff members: two social workers and an activities aide. The nursing aides rotate schedules and are present only for parts of the program as their schedules permit.

Often the priority in the nursing home is the resident's physical health. A resident's emotional well-being is seen as the social worker's job. In the Aspire Club it's everyone's job. This program is based on a social model, rather than a medical model, and gives equal weight to a person's physical and emotional needs. This is the reason for the use of interdisciplinary staff--social workers, activities aides and nursing assistants--who are cross-trained and function as a team. Each team member must agree to "pitch in" and do "someone else's job" when necessary.

Program Structure

The program has a series of modules, or "activities," that take place in three small groups at different locations in the large dining area. Groups consist of 6 to 10 residents and one staff member. Two of the groups will be able to focus to some extent on what is taking place in the group; the third group includes the wanderers and the people who tend to be "disruptive" because their needs are different from those of the individuals who are content to sit quietly and interact with others.

A typical day begins with "Personal Touches," in which the women and men are in separate groups. One staff helps the women with make-up and hair care while talking about anything that comes up; the men sit at another table and discuss the news. The staff bring in a newspaper and generally they talk about the sports section. "Personal Touches" is a time for residents to reminisce while doing something with which they are familiar. The third group is usually more active and meets in the living room section, where they can get up and move around if they need to. Staff might organize a "Walking Club" to give more purpose to wandering. Residents might "visit" their rooms or walk to the lounge and back. They hold hands (when possible) to give the residents more of a sense of being connected and "safe." These activities will last about half an hour, and the next activity will begin when staff sense, by observing residents' behavior, that a change is needed. If they have been sitting, the next activity will take pla ce in another area of the dining room so that they can get some exercise and have a slight change of scenery.

Small groups of six to eight residents are much more effective than larger groups. In fact, some residents experience so much stress in a larger group that it precludes their participation. Most people have a frame of reference for small groups, based on their own family composition, and appear more at ease with six to eight other individuals, than with 8 to 10. The larger the number in a group of residents with Alzheimer's disease, the less effective that group will be, and the more it will become a problem as residents struggle to process all the incoming stimuli from all the other members. Larger groups also dilute the attention each person receives.

The first three months of this program was spent revising and eliminating program modules. For instance, "table games" didn't work. Most midstage dementia residents can't figure out what to do and become easily frustrated. For example, often they can't play cards, but they can usually play with cards if everybody sorts them into suits or by numbers and passes them around or exchanges them.

Any planned activity might have to be modified if the residents are too restless that day. A key to this program is flexibility and an understanding that what counts is the interaction, not the activity, per se.

Training Is Important

The staff in this program were trained in responding to the population with dementia. Two weeks prior to the start of the program, the core staff met daily for two hours to discuss the program's purpose and ways to achieve it. They were encouraged to "get creative," to seriously think about residents' real needs versus the needs of the institution, and how to meet the residents' needs within the context of small groups. The training included exercises intended to increase their awareness of how it feels to have dementia and was borrowed from the approach used to train teachers how to effectively teach children with brain damage. Staff experienced how difficult it is for someone with dementia to process information when asked to do so at a much greater speed than they can handle. This was accomplished by rapidly asking staff questions about a very simple drawing and then discussing their responses and feelings when under pressure. Staff felt the need to relieve the pressure: Some attempted humor, some tried t o appease the interviewer, some made up nonsensical answers, some became mute-and all got angry. In looking at their own responses, they were able to get beyond the behavior to the underlying issue. They learned to communicate slowly and distinctly, to establish eye contact and to allow time for residents to process the question before expecting a response.

This program has launched a "culture change" in the facility in that the usual unit routine is "disrupted" by three non-nursing personnel who come on the unit each weekday and stay for four-and-one-half hours. Nurses and nurses' aides are asked to participate in the groups, which is not part of their training, nor is it in their job descriptions. However, some nursing staff have been very receptive to this program and regularly assist the core staff.

The ultimate question was whether the Aspire approach made a difference to residents. To evaluate this, a formal study was performed (a brief accounting of which can be found in "Statistical Success," p. 54).

In conclusion, we found that:

* The optimal program design for this population involves small groups of six to eight residents supervised by one staff person.

* Staff must be able to convey positive regard and give emotional support on a consistent basis.

* Activities should be based on resident need and should be flexible to meet the changing needs of this population.

* Meaningful, trusting relationships between staff and residents are a key element in the success of this program.

Acknowledgments

The authors wish to acknowledge help and support from many sources. First, this project would not have been possible without the residents, their families and the staff and administration at Episcopal Church Home and Affiliates in Buffalo. Annette Williams completed the baseline assessment of both groups (as discussed in the sidebar) as her master's thesis in the Health Service Administration Program at D'Youville College. She is currently completing her administrator-in-training program in Buffalo. The Aspire Club was funded by a grant from the New York State Department of Health's Dementia Grants Program and is administered by the Eddy Alzheimer's Association.

Judith A. Hutson, CSW, is director of Support Services for the Episcopal Church Home and Affiliates, 24 Rhode Island St., Buffalo, NY 14213-2197; phone: [phone], ext. 1333; e-mail: [e-mail]. Sharon 3. Hewner, RN, PhD, is an independent research consultant for Applied Anthropological Research in Health, the Environment, and Aging; phone: [phone]; e-mail: [e-mail].

Table. ASPIRE Tool Subscales

Each item is scored from 1 to 5, with a score of 1 indicating that the resident never does this activity and a score of 5 indicating that the resident always does this activity.

Awareness/Cognition Subscale Items

1. Attuned to present

2. Recognizes the presence of others

3. Aware of surroundings

4. Notices dangerous situations

5. Makes decisions

6. Uses logic/common sense

7. Comprehends conversation

8. Demonstrates abstract thinking

9. Learns new tasks

10. Remembers new information

Social Interaction Subscale Items

1. Shows recognition of others

2. Initiates conversation

3. Responds to direct questions

4. Responds to topic of conversation

5. Responds spontaneously

6. Speaks clearly

7. Makes basic needs known

8. Polite, courteous to others

9. Reaches out to others

10. Provides reassurance to others

Self-Esteem Subscale Items

1. Smiles

2. Responds to humor

3. Uses humor

4. Conveys calm

5. Is content

6. Feels in control

7. Feels safe

8. Pays attention to appearance

9. Takes pride in accomplishments

10. Conveys dignity

Activities of Daily Living (ADLs) Subscale Items

1. Continent

2. Uses toilet independently

3. Uses toilet with staff assistance

4. Walks independently

5. Uses a walker or cane 

6. Feeds self independently

7. Feeds self with staff assistance

8. Oriented when finding way in room

9. Eats all food on tray

10. Washes hands after toileting

STATISTICAL SUCCESS

Will a daily structured program with a primary focus on emotional support, relationships and learning improve the quality of life for residents with midstage dementia?

This deceptively simple question posed quite a challenge for the evaluation consultant who conducted a formal study to evaluate this program. The best research design to demonstrate effectiveness of an intervention is the classic experiment, in which an experimental group receives an intervention and a control group does not. Ideally, the subjects are randomly assigned to experimental and control groups. Unfortunately, random assignment is often not possible in a clinical population, so the study staff used a natural experimental design in which residents and their families chose a traditional medical model unit or the Aspire Club social model.

At the study's onset, both groups were assessed for demographic and clinical characteristics. At that point there was no significant difference between the groups in-age, sex, disease progression or functional ability. The study plan was to assess residents in both groups every three months to determine changes in their capabilities that might be related to the Aspire Club.

The study staff needed to develop a tool to accurately study residents with dementia in the facility. This process started before the Aspire Club was even conceptualized. The authors did a pilot study of a tool to measure functional change over six months in 12 dementia residents, and based on those results developed the 40-item ASPIRE scale, with four domains: awareness, interaction, self-esteem and ADLs (Table).

The ASPIRE total score, the sum of the four subscales above, could range from a low score a of 40 to a high of 200. A score of 40 means that the case received the lowest possible ranking (1) for each item, while a 200 means that the case received the highest ranking, (5) for each item. In a population of clients with midstage dementia, you would expect that scores would fall between these extreme scores.

The average total ASPIRE score was 120, with a minimum of 65 and a maximum of 167 (the distribution was skewed slightly toward lower functioning). Thus, the ASPIRE tool seemed to measure differences in function in this cognitively impaired population. Although there were some differences between the group that was in the Aspire Club and those who were in a traditional setting, none of these was statistically significant.

Although it is interesting to compare current functioning of dementia residents in traditional units and the Aspire Club, the most important measure for this study is how much each resident has changed from his/her own baseline assessment. That is, we want to see if each resident has improved, stabilized or worsened since his/her initial assessment. It was expected that there would be little change among the residents at three months. It takes time for dementia residents to benefit from an environmental intervention.

As we expected, at the three-month assessment, there were still no significant differences between participants in the Aspire Club and traditional units. There were about equal numbers of residents who improved or stabilized and whose condition worsened.

The picture was quite different at six months after baseline. Whether with clinical rating of function (either stable or worsened) or the total ASPIRE score, there were statistically significant differences in the participants and nonparticipant groups, with the participants remaining stable and nonparticipants worsening. In fact, the experience of two-thirds (66%) of the residents in the study supported the hypothesis that midstage dementia residents do better (decline less) in a daily structured program with a primary focus on emotional support, relationships and learning. The analysis used the chi-square test and was significant at p = 0.03. This result would occur by chance 3 times out of 100 trials.

The results are even more startling when one observes how the scores changed over time. For all residents, the average ASPIRE total score declined 21 points. That is no surprise because Alzheimer's dementia is a degenerative disorder. What was unexpected was that the average decline in the ASPIRE total for nonparticipant midstage dementia clients was 32 points, while the decline for participants in the Aspire Club was 14 points. That is nonparticipants declined twice as much in their total ASPIRE score. The result using one-way analysis of variance. (ANOVA) was statistically significant, at p = 0.013. Self-esteem, social interaction and ADL subscales showed less decline in the Aspire Club participants. In self-esteem nonparticipants declined 9 points, while participants declined 1.4 points. In interaction, nonparticipants declined 10 points, while participants declined 4 point. And finally, in ADLs, nonparticipants declined 6 points, while participants declined 1 point. The statistical significance of these d ifferences is especially surprising, since the sample size was relatively small.

Conclusions

* At six months into the program, 65% of the Aspire Club participants improved or remained stable. In contrast, only 31% of the residents with dementia on traditional nursing units remained stable, and the other 69% declined in their functional ability.

* The hypothesis-that a daily structured program with a primary focus on emotional support, relationships and learning will improve the quality of life for residents with midstage dementia-was supported by two-thirds of the cases in this study.

* Based on the total ASPIRE tool, participants in the Aspire Club showed significantly less decline in their functional ability. Specifically, participants showed less decline in self-esteem, interactions and ADLs.

Judith A. Hutson, CSW

Sharon J. Hewner, RN, PhD