Submitted to:
American Journal of Alzheimer’s Disease and Related Disorders

 By Linda L. Buettner

Linda L. Buettner, PhD, CTRS is an assistant professor and coordinator of Alzheimer’s Education Services at Decker School of Nursing, Binghamton University, Binghamton, NY

Phone: (607)-777-6171 Fax: (607)-777-4440

This project was funded by a New York State Department of Health Dementia Intervention Grant.

ABSTRACT

The Simple Pleasures research team investigated the effects of 30 handmade recreational items on the behavior of nursing home residents with dementia. The impact on family visits, staff knowledge, and volunteer involvement was also examined during the course of this study. Twenty-three items were found therapeutically valuable and acceptable for nursing home use. Family visits, use of recreational items, and satisfaction with visits significantly improved during the intervention. Residents were significantly less agitated at one nursing home and slightly less agitated at the other nursing home. Over 540 volunteers of all ages were trained and made Simple Pleasures items during this project.

KEYWORDS: nursing home, dementia, activities, visits, volunteers

SIMPLE PLEASURES: A MULTI-LEVEL SENSORIMOTOR INTERVENTION FOR NURSING HOME RESIDENTS WITH DEMENTIA

Approximately 10 percent of the population over 65 years of age has Alzheimer’s disease (AD) or a related disorder and currently 17,000 nursing homes in the United States care for an estimated 1.3 million residents with AD¹. Holmes et al² estimated that 60 to 70 percent of all new admissions to long term care facilities have AD. The National Alzheimer’s Association³ has approximated that there are over 1500 special care units housing over 50,000 residents with dementia. As the number of older adults with dementia continues to grow in nursing homes, so do concerns about the availability of quality of age- and stage-appropriate activities for residents, the quality of visits with family members, and the valid use of community volunteers for nursing home residents with dementia.

Literature Review

Previous studies have shown that specific types of therapeutic activities could serve as powerful interventions for nursing home residents with dementia and agitation ^4,5,6. In a quasi-experimental study completed using a cross-over design two different approaches were evaluated on a special care unit. The efficacy of sensorimotor recreation therapy was compared to traditional nursing home activities programming for a group of 36 residents. ⁵ This study demonstrated a significant difference between groups receiving traditional nursing home activities and those receiving functionally matched sensorimotor recreation therapy. When involved in the sensorimotor therapy, the residents were able to demonstrate improved strength, flexibility, and lower levels of agitation during programs.

In a longer, randomized 30-week study, 66 residents were provided with either a functionally matched sensorimotor activities program by a nursing-recreation therapy team, or a program of usual activities and care. ⁷ All residents were evaluated at baseline, 10 weeks, 20 weeks, and 30 weeks by a team of geriatric nurse practitioners blind to group assignment. In the first ten weeks of this study residents in the experimental group improved in overall functioning, mobility, cognitive status, levels of depression, and agitation. The control group declined on all areas. The goal was to train nursing home staff to continue the project as the clinical specialist gradually withdrew. The final data collection showed that the improvements were maintained for a second 10-week period while the clinical specialist was involved for half of the time. During the last ten week period, however, the integrated sensorimotor methods were abandoned and residents declined below baseline. These studies show the importance of stimulation and activity for special care residents with dementia. But programs of this type require a highly trained therapist, and unfortunately, are very difficult for nursing homes to maintain.

Sensorimotor materials

Appropriate sensorimotor recreation materials and stimulus objects have been used successfully with this population to reduce boredom and provide an outlet for motor restlessness.^8,9 However, despite agreement that these materials are beneficial, an adequate supply of items is seldom a reality in long term care environments. Activity directors have indicated that they feel they are doing their best to provide good services in an environment characterized by inadequate funding for materials.¹⁰ Administrators report that they are struggling to create a therapeutic environment without adequate resources to renovate, redecorate, or increase staffing levels.¹¹ With shrinking resources, it is not surprising that expenditures for recreation and sensorimotor materials have low priority.

Fortunately, many of the sensorimotor materials best-suited for use by this population are simple to fabricate. In fact, a glace through speciality catalogs will reveal that many of the objects sold could, in fact, be handmade by nursing home staff, had they time to spare. (It is clear that they don’t!) However, there are amble community resources with untapped skills to contribute. Many individuals and groups are eager to donate their time and effort, ¹² but the items they make are typically around holiday themes, and are not influenced by knowledge of what might be appropriate for residents with Alzheimer’s disease.

Successful selection of appropriate recreational items for special care residents cannot be haphazard. If handmade items are to be constructed and used in nursing homes rather than purchased from therapeutic catalogs, careful attention must be paid to their selection and design. Design of handmade recreational items must be grounded in a sound knowledge of therapeutic recreation and must include safety and toxicity considerations. Instructions for their construction must be carefully planned, as well as information, about their appropriate use. ¹³

Thus this project goes beyond the needs of the residents themselves. Alzheimer’s disease has a ripple effect; from the person with dementia to the caregiving staff working with the person to the family and the community. This multi-level research project’s goal was to decrease the impermeability of the boundaries between nursing home and community, between resident and family members.

Enhancing the quality of visits

Research has also shown that residents are less agitated when they have visitors. ¹⁴ However, family visits to nursing homes are often characterized by discomfort. It has been found, however, that friends and family are more comfortable expressing their feelings of love through "instrumental" interactions such as baking cookies for a loved one or making a gift for a person rather than through talking or assisting with personal care. ^15.. In addition, nursing homes often have volunteers who want to provide some service but feel "useless" with the residents with dementia. Thus, it makes sense that non-verbal, sensorimotor interactions can be a positive means of interaction for both the person with dementia and the family member or volunteer. The purpose of this project was threefold: 1) to design and produce age- and stage- appropriate sensorimotor recreational items for nursing home residents with dementia, 2) to reduce isolation, inactivity, and agitated behaviors in nursing home residents with dementia by enriching their environment with readily accessible, attractive sensorimotor items, and 3) to teach staff, volunteers, and families how to make the items and how to use the items to interact with nursing home residents with dementia.

The research project

Description of the facilities and residents

• All nursing homes that participated in the project are in Broome County in New York State

and included one facility without a special care unit, and two facilities with well established special care units. The facility without the special care unit was used as the pilot site for preliminary testing of the recreational items.

The research sample included 55 residents with a dementia diagnosis and their family/friends from the three participating nursing homes. The average age of the residents was 87.4 years. Eighty-one percent of the sample was female. The mean mini-mental state score was 6.7. Forty-three staff members took part in the staff survey component of the project. Fifty-one families, twenty from one research facility and thirty-one from the other, were interviewed in the family visit component of the project.

Research Design

The research took part in two phases. Phase one allowed the principal researchers to undertake a three month pilot test of recreational items in a nursing home not involved in the phase two research. Phase two involved testing the intervention in two 40-bed dementia special care units. This phase used a clinical cross-over design with one facility receiving the Simple Pleasures intervention for six months on then six months off. The other facility received the same intervention in the opposite order.

Phase I - Pilot

Thirty hand-made, therapeutically based sensorimotor recreational items were designed and tested for appeal, safety, and therapeutic value for residents of different functioning levels. Twenty-three of the items were found safe, appealing, and therapeutically sound for the intervention phase of the project. Written and illustrated "how to make" and "how to use" instruction sheets were created for each item. These printed hand-outs were the basis of Simple Pleasures and were disseminated and promoted to family members and community volunteers of all ages. Volunteer groups were provided with a 30 minute Dementia Education Program and invited to take part in the Simple Pleasures Project.

Phase II - Formal research

The research team set out to scientifically test the intervention using a clinical cross-over design in two nursing home dementia units. The three major research questions were: 1) Will age- and stage-appropriate sensorimotor recreational items, constructed by family members and volunteers for nursing home residents with dementia, positively affect frequency and quality of visits? 2) Will an increased supply of these handmade recreational items, and ready access to them, increase the time spent by residents in purposeful activities and decrease agitated behaviors?

3) Which Simple Pleasures items are most appropriate for the residents at each stage of the disease?

Measurement Instruments

The Folstein Mini-Mental State Examination (MMSE) was used to determine each resident’s level of cognitive functioning. Its convergent validity with other procedures has been documented as .902 or better. ¹⁶ It correlates highly with overall intellectual functioning, as measured with the Wechsler Adult Intelligence Scale. ¹⁷

The Cohen-Mansfield Agitation Inventory (CMAI) measures 29 agitated behaviors, rating each on a seven-point scale of frequency. ¹⁸ This scale has been found to provide reliable and valid measures for agitation in older adults even if the older adult cannot participate. The nurse manager on each dementia unit completed this rating scale for each participant at baseline, mid-point, and end-point.

A ten-item sub-scale from the Penn State Nursing Home Survey was used to evaluate staff knowledge and attitudes. This survey was given to all certified nursing assistants as a pre-test post-test evaluation during each phase of the intervention. This survey was administered by the research assistant.

The Scanning the Environment Tool was designed by the research team to be used in time sampling the environment for resident activity. This tool measured the number of residents in a specific area of the unit, and coded exactly what they were doing at that moment in time. Activity was coded from random videotaped segments and from direct observation in three specific areas of their nursing unit (nurses’ station, activity lounge, and corridor). This tool was used by the family liaison coordinator, research assistant, and principal investigator.

The Time Engaged With Item Scale was developed by the research team to separate residents by stage or MMSE scores to determine which residents preferred particular Simple Pleasures items at each level of functioning. This allowed researchers to determine what items worked best with a particular group of residents.

The Family Interview form was developed by the research team to determine if the perceived quality of family visits improved, increased, and if recreational items were used during visits. This interview was completed by the family liaison coordinator and the PI. The idea behind the interview was to get at the basic information in just a few questions. The three questions asked were: 1) In the past six months did you have (more, about the same, or less) visits than in the month prior to the study beginning?, 2) During your visits during the past six months did you use any recreational items with your family member?, which items? and 3) Would you say you were more satisfied with the visit, less satisfied with the visit, or about the same amount of satisfaction with the visit during the past six months?

In addition to this formal data collection, an informal count of community volunteer involvement was maintained by the PI and the Project Director.

Variables

The evaluation variables for the residents included: agitation, inactivity-activity, social interactions and family visits. The variable examined for staff was knowledge/attitude on the Penn State Nursing Home Survey. Variables for family members included: frequency of visits, use of recreation items, and satisfaction with visits.

Methods/Procedures for collecting data

Resident assessments

All residents in the study underwent screening for dementia using the MMSE and chart review for diagnosis of dementia. Each resident was assigned a confidential ID number by the research team. Baseline data was collected on residents with a score of less than 20 who agreed to take part in the study. A research assistant, the project director (PD), and one of the principal investigator(PI) assessed each participant at baseline, two mid-points separated by a one month wash-out period, and end-point. Residents were observed through random videotaping and by direct observation using a time sampling method, to find out which items appealed to, and were useful for specific residents.

Staff questionnaires

All staff were assigned a confidential ID number by the research team. These numbers were used to identify subjects who had returned the Staff Survey questionnaires at baseline, two mid-points to allow for a one month washout period, and end-point. Information concerning who had completed questionnaires and what their responses had been was not shared with Nursing Home Personnel. This data was collected by the graduate research assistant.

Family interviews

Fifty-one families agreed to take part in an interview at mid-point and end-point of the study. The interview was completed by the family liaison coordinator of the research team with follow-up information gathered by the PI. Data from the interview was coded by research site.

Community volunteer involvement

• During the course of this project volunteers were recruited, trained, and asked to fabricate

Simple Pleasures items for the nursing homes. A count of volunteers who were officially trained and made at least one item was maintained by the PI and the PD.

Data and results

Research question #1: Will age- and stage-appropriate materials constructed by volunteers and families for nursing home residents with dementia, positively affect the frequency and the quality of visits?

Families were interviewed in January, 1997 after the first six months of the project and again in July, 1997. Data was analyzed using SPSS program and crosstabs analysis and Chi-Square tests. Families at both sites reported significantly more visits during the intervention phase of the project. Families at both sites reported that they used recreational items during visits significantly more often during the intervention phase of the project. Families at both nursing homes stated they were more satisfied with their visits during the intervention phase of the project. Summary of these findings is reported on Tables 1-6.

Volunteers: During the 18 months of the pilot study and the intervention study 540 volunteers were recruited and trained to make Simple Pleasures items. Items that were popular for children’s groups to make were: squeezies, wave machines, home decorator books, dominoes, sewing cards and message magnets. Adult groups were able to choose items to make based on materials they had available and the skills of the group. Many additional volunteer groups have requested Simple Pleasures training, and have asked to work on Simple Pleasures items as Christmas gifts for residents with dementia since the research project has ended. Two corollary grants have been awarded to volunteer groups. One was used to train 4-H leaders throughout the state, a second grant was recently awarded to the Retired Senior Volunteer Program (RSVP) of Broome County. This group will be fabricating Simple Pleasures items for sensory kits for the Southern Tier Alzheimer’s Association to use in a lending library for family caregivers.

Research question #2: Will an increased supply of the sensorimotor recreational items, and ready access to them, increase the time spent by residents in purposeful activities and decrease agitated behaviors?

Residents were observed using a time sampling method and videotaping at 99 different time points at both intervention sites during the Simple Pleasures intervention and during the non-intervention period. Researchers evaluated resident activity and inactivity at the nurses station, the corridor leading to the nurses station, and in the activity lounge with a counting system. At each location the researchers coded the numbers of residents who were: Not doing anything, Doing something with miscellaneous, clothing, simple pleasures item, food/drink, another resident. Residents who were sleeping were not included in the coding. Mean scores were tallied for the intervention and non-intervention periods of the project. During the Simple Pleasures intervention at both facilities the number of residents "not doing anything" dramatically declined. During the intervention phase residents were more involved with the recreational items and with other residents. At research site #1 residents were less frequently found at the nursing station and more frequently found in the activity lounge. At research site #2 the numbers of residents increased at the nursing station and in the activity lounge during the intervention phase. These scores can be found on Tables 7 and 8.

The researchers felt it was vital to educate the staff as to the importance of approach and use of the activities items so that staff would use the items as interventions for boredom and (or) disturbed behaviors. Weekly 10 minute in-services were provided at change of shift to introduce new items. Certified nursing assistants were given a sub-scale from the Penn State Nursing Home Survey as a pre-test post-test survey to evaluate knowledge/attitude during the control phase and the intervention phase of the project. Using SPSS paired t-tests were run to analyze the staff survey scores. Despite weekly training there was no change in staff attitude/knowledge at either research site during either phase of the project.

Residents were assessed for levels of agitated behaviors at four time points during the study: baseline, two mid-points separated by a one month washout period, and at endpoint. The nurse manager was first trained by the PI and then assigned to score study participants on the Cohen-Mansfield Agitation Inventory. Reliability testing was completed using videotaped episodes of agitation. The reliability scores were acceptable at all time points (+.95). Using SPSS repeated measures ANOVA we determined that there was a significant treatment effect and a significant time effect. A series of paired t-tests were then run to identify differences in agitation between the different time points. During the intervention phase at research site #1 there was a significant drop in agitation (p>.001). There was a slight drop in agitation at research site #2 but the change was not significant. The mean scores for agitation can be found on Table 9.

Research question #3. Which items are most appropriate for the residents at each stage of the disease process?

The research assistant and family liaison coordinator completed multiple videotape and direct observations of each resident in the study to determine the Simple Pleasures items that were most appealing to each individual. An open cart of items was placed near the residents so they could freely choose from the selection on the cart. We documented the item selected and timed how long the individual remained actively involved with the item. After this data was collected we tabulated each resident’s MMSE score and the behavior problem most often exhibited. A chart was compiled listing the specific Simple Pleasures items, the number of residents who freely choose to use the item, the average length of time the item was used, and the average MMSE score of those residents. The final column delineates the behavior most commonly seen in that group of residents and the effect the item has on the behaviors. This data can be found on Table 10.

The most popular item on the chart is the tether ball. Forty-seven residents chose to interact with the item. This item had appeal to residents at all levels and held their attention for over 20 minutes. It is interesting to note that the wandering cart and the polar fleece hot water bottles were only useful for a small number of lower functioning residents but they were used for over 40 minutes.

Discussion of results

• This project had different implications for each facility involved. Research site #1 did not

have a full-time activities professional providing regular activities on the dementia unit. Someone from the activities department came to the unit to do scheduled programs for a few residents at several points during the day. There was a high degree of wandering and general agitation due to boredom prior to the intervention. Introducing the project on this unit with high boredom and agitation levels had a powerful impact. Agitation levels significantly and dramatically declined. Unfortunately, family involvement and staff involvement at this facility was low. Many families lived out of the immediate area and stated to the research team that they "depended on the staff to provide care and meaningful activities". The local families did become interested but the general opinion at the end of the intervention period seemed to be "let the staff take care of it". When the intervention team left there was very little carry-over effect. Simple Pleasures items were no longer made available to residents on a daily basis or adequately maintained, repaired, or replaced during the control period.

Research site #2 started the project with relatively low agitation levels. The unit activities program was well developed and staffed by 1.5 trained activities professionals. Families were very involved with the care of residents on this unit. Because the staff and families were in the control phase first, they were very anxious to become involved. Each week when new items were delivered to the unit families and staff were waiting for them. Families volunteered to make items and many families began to bring children during visits to play tether volleyball or table ball. Staff at this facility, from administrators, to social workers, and auxiliary staff were interested in learning how to make and use the different items. At the end of the intervention research site #2 hired the family liaison coordinator to continue the project. Although the agitation scores did not significantly change at this facility the administration recognized the benefits of the project and hired a part-time staff member to maintain it.

The impact on staff did not show up in the data collected. Through direct observation, however, the research team has found Simple Pleasures items being used regularly by staff at both facilities. One medication nurse used Simple Pleasures items on her medication cart to give out as a diversion. Another staff member stocked her cleaning cart with items for residents. An aide at one facility found it useful to use items during the bathing process. Activities leaders at the second research site use the Simple Pleasures items as part of their regular programming.

The impact on families perceptions of visits was very powerful at both facilities. The families viewed their visits much more positively during the intervention at both facilities. The individuals interviewed stated they visited more often, stayed longer, used recreational items during the visits, and were more satisfied with visits.

It is interesting to note that several of the Simple Pleasures items that had a calming effect were also items that warmed the residents. For example, the "fleecy muff", the "polar fleece hot water bottle", and the "sensory vest" were all made from polar fleece fabric. It appeared that a certain degree of disruptive behavior was caused by residents feeling cold. When given the items mentioned above the disruptive behavior disappeared within minutes.

Discussion of cost vs. benefits

The cost of making the Simple Pleasure items is very low. For the most involved project, a volunteer group might spend $20.00. Many of the items can be made for under $5.00 or with donated materials. A community group could make all the projects in the training manual for about $150.00! These same items could be purchased in speciality catalogs for $1500.00, but the benefits go beyond saving money. Community volunteers learn about a disease for which there is no cure, but realize there is something they can do to help. These volunteers often visit a nursing home for the first time. They make a connection and give something important to someone who has suffered many losses. Families benefit from this project because they also feel there is something they can do to help. Instead of trying to have a conversation that leads to frustration, visits become fun. Children become re-involved with grandparents or great grandparents through these simple activities. The nursing home resident with dementia reaps the most benefits from this project. Residents have an enriched environment with items to hold or interact with as they choose. Residents receive more frequent visits from family and make new connections in the community. Residents also begin socializing with each other using the Simple Pleasures items as a stimulus.

The training manual produced during this project was made available to every nursing home in the state for free as part of the dissemination plan.

Recommendations

Most nursing home residents with dementia have a problem with inactivity and

boredom. Some estimates reveal residents with dementia spend 60-80% of their time with nothing to do. ¹⁸ It is during this unstructured time that most disturbing behaviors occur. Residents are often seeking stimulation, movement, or comfort which leads to "needs-driven dementia-compromised behaviors". ¹⁹ Clearly there is not enough time or money to keep residents active and involved in meaningful activities. This project can be used as an intervention to enrich the environment of any nursing home that has volunteers and an open-minded staff and administration.

On-site training and re-training of volunteers and staff must be done for this project to succeed. It is difficult for volunteers to pick up the training manual and fabricate items without hands-on training and sample items to look at. It is also difficult for staff to understand how to use the items without seeing a trainer demonstrate the effectiveness. Simple Pleasures also has great potential for patients with dementia in acute care settings, adult day health programs and for community dwelling older adults with dementia. Additional research is needed to explore this potential in these other settings.

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6.Buettner L. A team approach to therapeutic programming on the special care unit. Journal of Gerontological Nursing. 1998; 24(1):23-30.

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17.Farber JF, Schmidt D, Logue PE. Predicting intellectual level from the mini-mental state examination. Journal of the American Geriatric Society. 1988;38(6),506-510.

18. Cohen-Mansfield J, Werner P, Marx M. Observational data on time use and behavior problems in the nursing home. Journal of Applied Gerontology. 1992;11(1)114-117.

19. Algase D, Beck C, Kolanowski A, Whall A, Berent S, Richards K, Beattie E. Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer’s Disease. 1996;11(6);10-19.

_intervention period		 ***P<.006
              

_intervention period        ***p<.000
                  

_intervention period        ***p<.001
                

_intervention period        ***p<.000
                  

_intervention period        ***p<.011
                

_intervention period        ***p<.000
                  

Items found most popular with families: home decorator books (n=21), tether ball (n=20), butterflies/fish (n=17), picture dominoes (n=15), message magnets (n=11).

Highlighted scores post test intervention period
***p<.001
                  

*Intervention period   Control period

* Intervention period    Control period