Journal of Gerontological Nursing

Relieving the Anxiety and Fear In Dementia

Marilyn Schwab, OSB, MSN, RN; Joanne Rader, MN, RN; Judy Doan, MS, RN

Abstract

Dementia is one of the most feared diseases of old age. Persons suffering from dementia present a variety of serious management problems in long term care settings. Their care is often custodial; consisting of feeding, diapering, restraining and medicating. Caregivers are usually hard pressed to find ways to manage the patients' most elemental needs. In spite of the current interest in Alzheimer's disease, the literature offers few creative approaches to help improve deteriorating behavior patterns in victims.

In an attempt to deal with daily nursing problems more effectively, and to improve the function of dementia sufferers, a special program was designed called SERVE.

SERVE is an achronym for SelfEsteem , Relaxation, Vitality and Exercise. The program consists of music, exercise, touch, and relaxation, administered in a group setting for an hour three times a week.

The host facility was a 127 bed, intermediate care facility in a rural northwestern community. As in many similar facilities, about 50%-60% of the population had some degree of cognitive impairment. Most also had severe physical impairments and were unable to ambulate freely.

When an administrative decision was made to change some bed assignments from Medicare to skilled, long term care, five severely disoriented ambulatory residents were admitted to one unit in a few weeks. The nursing problems this situation created became the catalyst for action by nurse clinicians, and initiated the SERVE program.

As a Teaching Nursing Home, in collaboration with Oregon Health Sciences University School of Nursing, we were able to provide some of the structure and support necessary to evaluate the effects of the SERVE program as a behavior management mode.

The other conceptual basis of SERVE is a basic philosophy of care. Our facility has a strong tradition based on a "holistic" approach to patients. Each patient is considered unique and complex in their need. No problem is seen in isolation from the total person, nor is there strict separation between spheres of treatment.

The various practitioners possess individualized talents and work together. They cross traditional lines of thinking and sharing. It is not unusual for a nurse to use therapeutic touch on a decubitus, for a housekeeper to be involved as a volunteer in an exercise group, or for a speech therapist to collaborate with the chaplain.

It is in keeping with our philosophy and tradition that exercise, touch and music are accepted as a worthwhile use of time for a nurse clinician. These are used in preference over the use of psychotropic drugs for very disoriented and difficult patients.

Many articles were published in the nursing literature about Alzheimer's disease in the past few years, but most focus on the diagnosis, prevalance, description, family stress, and management of the disease.312 Few address the issue of treatment of the "excess disability" and the improvement of function.

There have been some excellent articles on the therapeutic use of environment, communication, and touch.13"19 Several of these report improvement in the clinical situation, but often the approach seems directed to better understanding by caregivers, and more appropriate arrangement of the environment to make care more tolerable to the staff.

Nursing intervention can and should be directed to a higher goal than smoother management of symptoms; it can in fact reverse symptoms.

Reality orientation (RO) was one of the early important methods of treatment introduced into dementia patient care. It was first described and tested in the late 1950s by the Veterans' Administration Hospitals. It has been widely used in institutional settings, and studied fairly extensively.20"24 It may involve three aspects: daily group therapy, 24-hour reality orientation, and attitude therapy, which includes enrichment of…

Dementia is one of the most feared diseases of old age. Persons suffering from dementia present a variety of serious management problems in long term care settings. Their care is often custodial; consisting of feeding, diapering, restraining and medicating. Caregivers are usually hard pressed to find ways to manage the patients' most elemental needs. In spite of the current interest in Alzheimer's disease, the literature offers few creative approaches to help improve deteriorating behavior patterns in victims.

In an attempt to deal with daily nursing problems more effectively, and to improve the function of dementia sufferers, a special program was designed called SERVE.

SERVE is an achronym for SelfEsteem , Relaxation, Vitality and Exercise. The program consists of music, exercise, touch, and relaxation, administered in a group setting for an hour three times a week.

The host facility was a 127 bed, intermediate care facility in a rural northwestern community. As in many similar facilities, about 50%-60% of the population had some degree of cognitive impairment. Most also had severe physical impairments and were unable to ambulate freely.

When an administrative decision was made to change some bed assignments from Medicare to skilled, long term care, five severely disoriented ambulatory residents were admitted to one unit in a few weeks. The nursing problems this situation created became the catalyst for action by nurse clinicians, and initiated the SERVE program.

As a Teaching Nursing Home, in collaboration with Oregon Health Sciences University School of Nursing, we were able to provide some of the structure and support necessary to evaluate the effects of the SERVE program as a behavior management mode.

The main concept for the SERVE program base is that there are reversible aspects of dementia. Dementia, known alternately as chronic brain syndrome, organic brain syndrome, Alzheimer's disease, and multi-infarct disease, is a serious problem. It is irreversible and progressive. However, that too often translates into a belief that nothing can be done to improve any aspect of the behavior or lessen the degree of discomfort experienced by the patient. Treatment is limited to custodial management of basic needs.

One of the concepts that underlies our approach to patients with dementia is a belief that many of the behavioral symptoms evolve from patients' responses to the environment and their personal awareness of cognitive deficits. Fear and anxiety are normal emotions when a patient feels confused and disoriented so much of the time. Defense mechanisms of varying kinds are used by the patient to protect the "self in this threatening situation.

This emotional and psychological component of dementia was described and named "excess disability" by Robert Kahn and Alvin Goldfarb nearly 20 years ago.1 It was further used by Elaine Brody and colleagues from Philadelphia Geriatric Center (PGC) in 1970 to study the effects of intervention with patients suffering dementia. Brody defines it as "the discrepancy that exists when a person's functional incapacity is greater than that warranted by the actual impairment."2 The PGC study was directed to the effects of treating physical, psychological and social correlates of cognitive impairment. SERVE was designed to deal with those same correlates of the cognitive impairment.

The other conceptual basis of SERVE is a basic philosophy of care. Our facility has a strong tradition based on a "holistic" approach to patients. Each patient is considered unique and complex in their need. No problem is seen in isolation from the total person, nor is there strict separation between spheres of treatment.

The various practitioners possess individualized talents and work together. They cross traditional lines of thinking and sharing. It is not unusual for a nurse to use therapeutic touch on a decubitus, for a housekeeper to be involved as a volunteer in an exercise group, or for a speech therapist to collaborate with the chaplain.

It is in keeping with our philosophy and tradition that exercise, touch and music are accepted as a worthwhile use of time for a nurse clinician. These are used in preference over the use of psychotropic drugs for very disoriented and difficult patients.

Many articles were published in the nursing literature about Alzheimer's disease in the past few years, but most focus on the diagnosis, prevalance, description, family stress, and management of the disease.312 Few address the issue of treatment of the "excess disability" and the improvement of function.

There have been some excellent articles on the therapeutic use of environment, communication, and touch.13"19 Several of these report improvement in the clinical situation, but often the approach seems directed to better understanding by caregivers, and more appropriate arrangement of the environment to make care more tolerable to the staff.

Nursing intervention can and should be directed to a higher goal than smoother management of symptoms; it can in fact reverse symptoms.

Reality orientation (RO) was one of the early important methods of treatment introduced into dementia patient care. It was first described and tested in the late 1950s by the Veterans' Administration Hospitals. It has been widely used in institutional settings, and studied fairly extensively.20"24 It may involve three aspects: daily group therapy, 24-hour reality orientation, and attitude therapy, which includes enrichment of the environment and activities. Too frequently, however, it has been used with less than full appreciation of the theory.

Some practitioners and researchers believe that reality orientation as a management technique ignores the fact that disorientation may be a coping mechanism for persons who find reality unacceptable or overwhelming.20,25

The authors believe there is meaning in disoriented behavior and language. When a care-giver corrects the patient in the name of reality orientation, and passes over the meaning, this pushes the patient further into their anxiety and isolation.

In the SERVE program, the attitude therapy component of reality orientation is utilized extensively, while the factual reality orientation component is totally omitted unless the patient asks for the information.

Prior to the discovery of reality orientation, a method of group work called remotivation was used with confused, withdrawn patients. It utilized a very uncomplicated, stylized group approach with concrete, simple materials, stressing the stimulation of the senses. This technique is now integrated in many groups with the elderly, such as groups using animals or plants.26,27 Remotivation is used in the SERVE program through impromptu, spontaneous exploration of objects in the environment.

The work of Irene Burnside in dealing with the emotional world of the frail disoriented and isolated elderly, is the most important influence on the SERVE program.28,29

Many of Naomi Feil's concepts on validation therapy were also incorporated into the SERVE program.25

The idea of using physical exercise as a group treatment method for the elderly confused patient is not new.30-33 Physical exercise is an important component of SERVE, but the authors also relied on touch and relaxation, and especially on the interpersonal interaction of the participants. The psychosocial nurse in particular adds her skill to the beneficial effects of exercise, making SERVE a much more complex intervention than physical exercise alone.

The Program

The SERVE program has four components:

1. Simple stretching and range of motion exercises, which are usually done from a sitting position;

2. A "fun" component;

3. Walking time; and

4. A massage and relaxation period.

The entire program, with the exception of the walking, is done to appropriate music.

The physical environment is important in treatment. It is extremely important to have a bathroom close by. In addition, the group work area has a door that was shut to prevent initial wandering.

The fewer visual, auditory and tactile distractions, the better. As the group progresses, this becomes less critical, but initially there is a high level of distractibility. It is also important that chairs be comfortable. Some participants require a foam pad in the wooden chairs. Participants need firm walking shoes, glasses, dentures in place, hearing aides if required and sweaters, for maximum function and comfort.

The size of the group is significant. It seems best to begin small (three to four persons), gradually adding participants until the group numbers around eight. A group larger than eight dilutes the one-to-one contact as well as the group identity.

Two leaders are necessary because the participants have special needs, such as needing assistance going to the bathroom. It is helpful to select one or two extroverted patients to participate. This helps stimulate interaction in the group.

The range of motion/stretching segment lasts about 15 minutes. Initially, this section required about 30 minutes to complete because of the participants' distractibility, apraxia, and short attention span. The sequence of exercise is predictable, starting with the head and working down. This predictability helps patients develop a sense of competency and anticipation of what will happen next, an experience too often lacking in the lives of disoriented persons. Attractive pictures were placed on the ceiling to add interest while doing backward neck extension motions.

The vitality/fun component lasts about 15 minutes and introduces more variety than the exercise component. There are often new exercises, games, or equipment used to help develop a sense of spontaneity in an otherwise safe, predictable group situation.

In this segment the authors use parachutes, foam bats, beach balls, nerf balls, punching bags, basketball hoops, mini-trampolines and dancing. Participants often emote at this point - laughing, joking, and squealing for joy. The leaders must use their own sense of spontaneity and joy as role-models. This gives the participants permission to act in a similar fashion.

If participants miss catching the ball, it is thrown to them again, each time shortening the distance until they successfully catch the ball. This promotes a sense of success. Praise and positive reinforcement is used. No one is criticized for missing and the emphasis is on the person doing his/her best, not on competing with another. The leaders must refrain from being self-critical so they present a positive role-model.

The walking segment takes about 10 minutes, depending mostly on the weather. Walking outside is best. The period is deliberately prolonged when the weather is good and there are flowers and birds to watch. If the weather is poor, walking is confined to a group stroll about the building.

The relaxation component is about 10 minutes in length, consisting of deep breathing, relaxation, shoulder and back massage, and therapeutic touch with special music. The therapeutic touch technique of Dolores Kreiger is used.34 After a few days of being massaged, experiencing therapeutic touch from the leaders, the participants are encouraged to touch one another. Some have begun to do it spontaneously even outside the exercise session.

The foregoing description is deceptively simple. It is deceptive because while the program is uncomplicated, it requires highly skilled leaders who are constantly focused on the responses of participants rather than on the activity itself. They must be trained observers and evaluators, with a flexible and varied repertoire of interventions. They are continually aWare of giving only positive reinforcement, and avoiding any negative commands or directions. They must be on guard against any form of condescension. Forms of patronizing behaviors and negative controlling relationships are very often subtle and buried in well-meant and kind words.

Some group workers may compose their own goals for individuals, find certain behavior "cute" or have their own needs for "success" with the group. None of those attitudes are acceptable if a program like SERVE will succeed. Leaders must make individual assessments of the cognitive and emotional state of the participants and respond to those individual needs. The leader must recognize when a behavior represents progress for the participant rather than disruption for the group.

Leaders need skill and caring to make genuine contact with the participants. The goal is to reach the core of the person inside the haze of confusion, conveying love, respect, and understanding.

The main goal of the program is to help participants achieve a sense of order in their disoriented world and to know success: rare experiences for them.

The object of the session is to create an atmosphere of safety, predictability, and acceptance that will foster the release of fear and anxiety, or the excess disability. The belief is if the participant can experience some degree of confidence and success, even a few hours a week, it will affect his/her sense of well-being and functioning outside the session.

The results thus far have been dramatic in some cases, and modest but encouraging in others. Some patients have been taken off psychotropic drugs, and other have ceased noisy disruptive behaviors, and are functioning safely and well without restraints.

There have been interactions between participants outside the sessions. For example, two of the ladies now walk together. Prior to the exercise^sessknre one of them would leave the building if she was not watched and restrained. Now the other one gives her the companionship she seems to need, and neither leave the building without permission.

Several of the participants who only mumbled unintelligibly prior to the experience now initiate interaction with staff and other patients, offering to rub another's shoulders, for instance.

It is important to note that no one is cured of the dementia. Conversations are not necessarily more oriented; but there is a quality of interpersonal contact, warmth, and security that was not present before.

It is also important to note that some have shown almost no improvement.

The effect on the staff is also interesting. At first, because of the problem presented by the new "wanderers" the staff accepted any help they could get. They were happy to bring patients to the sessions, so someone else could watch the patients for a while. As they began noticing the changes in the patients, the staff became curious and supportive. Several asked to sit in on the group. One aide from the unit spoke enthusiastically at a staff meeting about the exercise group.

When the clinical specialist offered an in-service on dementia for the whole facility, the highest attendance was from that unit. The staff began to copy some of the interactions they observed the clinical specialist using, such as placing patients together at the same dining table, or walking restless patients rather than nagging them or restraining them.

Housekeepers as well as nurse aides began to seek out the clinical specialist to report their observations and make further suggestions for improving care. The staff now asks for possible alternatives to restraints and medications as well as coming up with their own ideas for alternative approaches. As a result of the experience with the SERVE group, the attitude of staff has gone from one of dreading the care of patients with dementia, to an attitude of excitement and creativity.

One more group has been initiated since this first SERVE group. So far, the results are mixed. Study is continuing on-both groups^ in an effort to sort out why some patients respond and others do not. We are studying which combinations of patient conditions and intervention work better than others.

As the experience and the research continues, there are more questions than answers. Either the clue is extremely simple (such as the improvements are based on the mere fact of oneto-one attention) or it is extremely complex with so many variables that predictions are difficult to determine.

The one conviction that is solid at this point is that this intervention with severely demented patients is truly worth the effort.

Nurses need to add their contributions to the care of patients with this serious disease by continuing to create interventions for the excess disability and to test the results by clinical research. It is not enough to accept the medical prognosis of irreversibility and merely house the people who suffer dementia. Offering relief from symptoms, especially relief from fear, anxiety, and the loss of self-worth is possible, and the methods are well within the scope of nursing practice.

References

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10.3928/0098-9134-19850501-04

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