A design for enhancing independence despite Alzheimer's disease.

A pioneering Alzheimer's center investigates the specifics of "quality of life"

Although there are many possible explanations of how various environmental factors contribute to the independence and overall quality of life of nursing home residents with Alzheimer's Disease (AD), our knowledge is rudimentary. Environmental catch words, such as "specially-designed units/environments for the care of AD residents," or "homelike environments within an institutional setting," are linked to the quality of life and the quality of care, but we know little of what these phrases mean or how to use such concepts to benefit AD residents. As stated by Hiatt,[1] there has been little realization of the potential use of the physical environment as a therapeutic tool, even in settings where it has great potential for this.

Research can play a fundamental role in making explicit the nature and influences of environmental resources. For the elderly in general, and AD patients in particular, such research could test the appropriateness, and authenticate the effectiveness, of designs for this cohort.

For example, it is argued that certain colors and/or textures may have a soothing effect on anxious or agitated victims. It is reported that square tables may be more conducive to self-feeding than round ones, or that certain types of cues may be more helpful than others in locating toilets or bedrooms. Others suggest that a circular walking path or track may be beneficial to the management of AD patients. The mere preponderance of anecdotal evidence, however, has never been enough to assure the acceptance of an idea.

In order to identify specific characteristics of the physical environment that have a constructive impact on AD patients, a series of eight studies was designed and implemented at the Corinne Dolan Alzheimer Center (CDAC) in Chardon, Ohio. A basic description of this facility was offered in a previous issue of Nursing Homes ("A Model Unit: The Corinne Dolan Alzheimer Center," Nursing Homes July/August 1991, pp. 8-12). These studies represent an ongoing commitment by the CDAC's Research Center to study the effect of the physical environment in a long-term care facility on the care and management of individuals with AD. The flexibility of the CDAC design, in response to both patient care and the specific requirements of the research, makes this center particularly suited to carrying out empirical studies on environmental influences.

The results from the CDAC's projects may not be generalizable to other facilities because of the small number of residents in the projects, the level of AD impairment, and the uniqueness of the CDAC design. However, evaluation of these parameters has granted us an opportunity to scrutinize several elements of design, which may be crucial for the AD population, e.g., structure of closets, bathroom accessibility, memory linked cuing, and allocation of space to retain concentration. The studies also address a number of problems associated with AD, such as disorientation, distractibility, incontinence, and agitation, as well as examine different aspects of physical environment, e.g., ambiance, utilitarian components, and structural features.

These studies are the first step in a long-term commitment to understanding and applying research toward the "normalization" of nursing home settings, and are specifically useful in the design and implementation of special care units for AD residents.

General Approach

In order to conduct and evaluate these projects, a research protocol with four components was designed: 1) ethics -- a summary of projects was presented to the facility's Internal Review Board to demonstrate that the rights and the dignity of the individuals were fully protected, and that the family members/guardians were aware of the nature of the projects; 2) identification of residents as participants in these studies; 3) assessment of resident prior to inclusion in the project for probable/possible AD; and 4) observation of the residents by trained observers and staff under different conditions.

All family members/guardians of residents were informed upon admission to the CDAC of the research projects and were asked to sign a consent form for each of the 8 projects. At the time of research implementation, all AD residents were informed and were given a verbal account of the study and an option to participate. All residents were assessed at the University Hospitals of Cleveland's Case Western Reserve University and were diagnosed with probable Alzheimer's disease.

The information gathered through observation was coded, verified, and entered into the computer for analysis, using SPSSPC+. The implementation of all 8 projects took 21 months, but the length of individual studies varied from two weeks to four months. The number of participants also varied from one study to the next, with a range of 10 to 25 participants. Residents' ages ranged from 68 to 90, with an average of 81.16 years. Most residents were females (n=16), and the length of residency for all patients ranged from 8 to 20 months, with an average of 15.58. From these studies findings are beginning to emerge regarding key facets of Alzheimer's care.

Cueing Orientation

The use of a name plaque, personal photographs, and/or other door decorations are reported by many to help the disoriented patient locate his/her own room.[1-3] Usually, personal memorabilia are relegated to the interior of the patients' rooms, offering a sense of familiarity and homelikeness.[4] However, since the ability to comprehend written words, even a name, usually diminishes with the progression of the disease, there are often relatively few cues outside the bedroom on which a confused person can rely for room identification.

This study focused on how the environment can be utilized to enhance an AD patient's ability to find his/her way and identify his/her bedroom without relying on staff or significant others for assistance. Recessed into the wall at the entrance to each resident's bedroom is a display case. Prior to admission, family members/guardians were asked to select certain significant objects that held special memories for the resident prior to the onset of disease. After these items were placed in the display cases, an observer asked each resident to locate his/her bedroom within a three-minute time period. In the second part of this study, the significant items were replaced with meaningless items: objects that had no connection to the person or his/her lifestyle. The same test was repeated under this condition, and the resident was asked to locate his/her bedroom.

The results indicate that residents in the early stages of disease did not encounter any difficulties in locating their bedrooms and were generally more successful than other groups under both conditions. Residents in the intermediate stage of disease were less successful under the unfamiliar condition. The only resident in the most severe category was not successful in locating his room under either condition.

Incontinence

Although research has demonstrated that at some time during the course of the disease most AD patients will exhibit symptoms of urinary incontinence,[5] few suggestions have been offered for reducing the problem.[6] Others report that clinically at least half of the cognitively impaired elderly with an incontinence problem could regain control. Mace and Rabins[7] suggest that one source of the problem may be the lack of visibility of the toilet; that is to say, "out of sight, out of mind," since the private bathrooms in most nursing facilities are behind closed doors. This study tested an alternative way of allowing visibility while at the same time providing privacy.

The design of the bedroom provides ample visual accessibility to the toilet area. The toilets of half of the participants were concealed behind a curtain while the second group's toilets were left openly visible. Three strategies were employed to record the usage: checking for: 1) separation of a piece of tape which connected the flush lever to the water tank; 2) the contents of the toilet when it was flushed; and 3) wet floors and other signs of usage.

The results indicate that under the open curtain condition there were 171 broken tapes; 96 usages of toilet without flushing, and 18 cases of wet floors and other signs of usage, in a total of 260 cases. Under the closed curtain condition there were 25 broken tapes; 10 usages of toilet without flushing; and 2 cases of other signs of usage, in a total of 37 cases.

Way Finding

Among ambulatory patients with AD, the inability to locate public bathrooms may contribute to the problem of incontinence.[8] A variety of cues have been suggested to assist a patient in identifying public bathrooms: signage, color differentiation, and images.[1,9] Zandi and Woods[10] report the enhancement of memory among AD patients when pictures are used to supplement verbal directions. There have been no empirical studies, however, which examine the relative utility of these cues.

In this study, two nomenclatures, "restroom" and "toilet," one graphic figure of a homelike toilet with a watertank attached to it, and a combination of a nomenclature and directional arrows were employed to direct the residents to the public facilities. Background and lettering colors of signs, location of signs (height), and the size of letters in the sign were tested prior to the inception of the study. Residents' behaviors were recorded for looking at signs, entering bathrooms, and utilizing the toilets.

Results show that in the pre-test condition, without any signs, 72 persons entered the public facilities and 68 used the toilets. When the "restroom" signs were placed in five locations on the walls, 83 residents looked at the signs, 100 entered and 83 used the toilets. Under the "toilet" sign condition 104 residents looked at the signs, 108 entered, and 88 used the toilet. The graphic signs were the least useful: 64 looked at them, 90 entered, and 86 used the toilets. The best results were obtained when the word "toilet" with connecting arrows in the floors directed the residents into the public facilities. One hundred seventy-one looked, 133 followed the arrows and entered the facilities, and 107 utilized the bathrooms.

Distractibility

Loss of attention span and distractibility are characteristics associated with the progressive deterioration of cognitive abilities.[11] The patient becomes increasingly incapable of processing multiple stimuli, leading to confusion and agitation.[7,12] Hall and Buckwalter[13] have suggested that a low-stimuli care setting may facilitate patient functioning, but this can be both expensive and impractical in many existing nursing homes. An alternative method of limiting multiple stimuli in the environment is needed to enhance concentration; movable wall dividers may serve this function.

This study tested the extent to which controlling potentially distracting visual stimuli -- through the use of movable partitions of varying heights -- influenced residents' task performance. Partitions were made of fabric, which did not influence acoustic stimuli. In addition to a no-barrier condition, partitions were created at heights of 54" and 72".

Results suggest that the presence of a barrier, regardless of the height, minimized distractions and supported attention span for participants working on a coloring or sorting task. Distractions were more frequent in the no-barrier condition.

Agitation

Autonomy and independence of nursing home residents have been the focus of many empirical investigations, and the subject of countless extrapolations.[14,15] Increased attention to the issue of autonomy suggests that specific environmental features of special care units may help restrict or enhance independent action. Since freedom and perception of choice have been shown to be more important to the physical and psychological health of the elderly,[16] a protective environment should not infringe on a resident's right and need to move about freely.[17]

This study tested the effect that free access to the outdoors has on the behaviors of this cohort. While the exit doors were closed and locked, behaviors of residents were monitored for two weeks. All manifested behaviors, 30 minutes prior to and 30 minutes after the arrival by the exit doors, were documented for the following: verbal behavior, sexual behavior, agitation, and physical actions.

The results show that behaviors manifested by residents under different test conditions were drastically different. Under the open doors condition, agitated behaviors were reduced to one-fifth of those behaviors seen under the closed doors condition. Wandering was reduced by one-sixth, and physical aggressiveness decreased by one-half.

Dressing

Attention has been directed to enhancing patients' independence by using existing skills in performing the activities of daily living.[4] With short-term memory loss, most activities need to be broken down into a series of steps to be acted upon one at a time.[7,18] Dressing is one activity which has been identified in terms of sequential stages.[8,18] The degree to which this successfully fosters autonomy has yet to be tested.

This study, a quasi-experimental, tested whether a special design feature in the closet could help residents become more self-reliant. The modified closet contained several horizontal rods which permitted clothing to be arranged in the appropriate sequential order.

Pre-test showed 432 cases of independent dressing, 53 cases of dressing with verbal prompts, 52 cases of dressing with physical prompts, and 71 cases of total dependence on staff for dressing. The closet modification increased independence in dressing with verbal prompts by 15%. However, for those who needed physical assistance, or who were totally dependent on staff for dressing, the modified closet was not effective.

Self Sufficiency

The dearth of information on nutrition and caloric intake of AD patients is clearly apparent. However, consumption of inedible objects or refusal to eat are common among those afflicted with these diseases.[19] Gwyther[8] cautions staff that AD patients often may become dehydrated or undernourished because they forget to eat or they may not like the food being offered. Advocates of "milieu" or "reality orientation" therapy for demented patients[4,20] recommend that patients be involved in activities which, as much as possible, are extensions of their pre-morbid lives. Personal choice in the selection of favorite foods is one aspect of patient care which has been difficult for institutions to implement. However, if snack foods can be selected by the patients at times of their own choosing and based on personal preference, patients may be more likely to increase their nutritional intake.

A small dormitory refrigerator and a specially designed all-glass refrigerator were set up to test whether residents would independently seek and consume foods. Food and snacks included carrot sticks, bananas, yogurt, donuts, cake, juices and Jell-O. The results indicate that a glass-sided refrigerator (which allows visibility of the food) provoked more independent consumption of snacks than an equally accessible traditional dorm-style refrigerator.

Continuity

Staff caregivers provide anecdotal reports about the pleasure Alzheimer's patients receive from engaging in old familiar activities. One example is that of a former avid reader looking through books, even though he can no longer comprehend the words.[8] The need to recapture familiar routines may account for the wandering activity seen in some Alzheimer's patients whose occupations, such as postman or farmer, involved long periods of walking.[2] It has also been suggested that establishing a daily pattern akin to the patient's former routine may facilitate reality orientation.[3] If life-long activities which gave structure and/or pleasure to an individual are disrupted by the inability to live a self-directed life, offering such opportunities within the new institutional environment may help dispel periods of boredom and enhance self-esteem by linkage to the past.

In this study, residents selected tasks from two categories: 1) familiar activities, which included dusting, dishwashing, folding towels, and preparing simple food; 2) unfamiliar tasks, which included stuffing envelopes, putting paper in a binder, untangling coat hangers, and placing coins in a bankroll. Residents were observed for distractions from tasks. The results show that 23 episodes of distractions occurred when working on familiar tasks, and 31 distractions from choices occurred when performing unfamiliar tasks. This is a 35% increase.

Conclusion

The results of some of these projects have already been incorporated in the design of other facilities similar to CDAC. We believe that through this type of scientific research most of the problematic areas of design can be alleviated, and we will be able to build facilities that can enhance the quality of life of Alzheimer's residents and reduce the burden of caregiving for staff.

References

[1.] Hiatt LG. Designing for mentally impaired persons: Integrating knowledge of people with programs, architecture and interior design. Presented at the Annual Meeting of the American Association of Homes for the Aging, 1985, Los Angeles.

[2.] Coons DH. Wandering. The American Journal of Alzheimer's Care and Related Disorders & Research 1988; 3:31-36.

[3.] American Association of Homes for the Aging (AAHA). Guide to Caring for the Mentally Impaired Elderly. Washington, DC, American Association of Homes for the Aging, 1985; 108-9.

[4.] Haugen PK. Behavior of patients with dementia. Danish Medical Bulletin 1985; 32 (Suppl. 1):62-5.

[5.] Reisberg B. Dementia: A systematic approach to identifying reversible causes. Geriatrics 1986; 41:30-46.

[6.] Ouslander JG. Urinary incontinence in nursing homes. Journal of American Geriatric Society 1990; 38:289-91.

[7.] Mace NL, Rabins PV. The 36-Hour Day. New York, Warner Books, 1981.

[8.] Gwyther LP. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC, American Health Care Association, and Alzheimer's Disease and Related Disorders Association, 1985.

[9.] Hussian RA. Severe behavioral problems, in Teri L, Lewinsohn P (eds): Geropsychological Assessment and Treatment. New York, Springer Publishing Co., 1986; 121-43.

[10.] Zandi T, Woods S. Alzheimer's memory strategies. The American Journal of Alzheimer's Care and Related Disorders & Research 1988; 3:7-11.

[11.] Gugel RN. Managing the problematic behaviors of the Alzheimer's victim. The American Journal of Alzheimer's Care and Related Disorders & Research 1988; 3:12-15.

[12.] Hall G, Kirschling MV, Todd S. Sheltered freedom: The creation of a special care Alzheimer's unit in an intermediate level facility. Geriatric Nursing 1985; 7:232-6.

[13.] Hall GR, Buckwalter KC. A conceptual model for planning and evaluating care of the client with Alzheimer's disease or a related disorder. Paper presented at the Annual Meeting of the American Association of Neurosciences Nurses, 1986, Denver, Colorado.

[14.] Cohen ES. The elderly mystique. Constraints on the autonomy of the elderly with disabilities. The Gerontologist 1988; 28:24-31.

[15.] Hofland BF. Autonomy in long-term care: Background issues and a programmatic response. The Gerontologist 1988; 28:3-9.

[16.] Rodin J. Aging and health: Effects on the sense of control. Science 1986; 233:1271-5.

[17.] Rosswurm MA, Zimmerman SL, Schwartz-Fulton, et al. Can we manage wandering behavior? The Journal of Long-Term Care Administration 1986; 14:15-19.

[18.] Beck C. Measurement of dressing performance in persons with dementia. American Journal of Alzheimer's Care and Related Disorders & Research 1988; 3:21-5.

[19.] Litchford MD, Wakefield LM. Nutrient intakes and energy expenditures of residents with senile dementia of the Alzheimer's type. Journal of the American Dietetic Association 1987; 87:211-13.

[20.] Coons DH. Alive and well at Wesley Hall. Quarterly, A Journal of Long Term Care 1985; 21:10-15.