Alzheimer's Disease Caregivers: The FOCUSED Program

Transcription

1 Alzheimer's Disease Caregivers: The FOCUSED Program A communication skills training program helps nursing assistants to give better care to patients with Alzheimer's disease. Bu DANIELLE N. RIPICH/MAY WYKLE/SHEILA NILES A lzheimer's disease (AD) is a neurologic disease with a progressive degenerative course. Communication problems are particularly acute for persons with AD and their formal care providers, who are most often nursing assistants. These caregivers have direct daily contact with AD patients and are often frustrated in their attempts to establish a rapport with these patients. Clinical experience has demonstrated improvement in interpersonal relations between the caregiver and the patient when the caregiver understands the nature of the linguistic and intellectual problems experienced by the patient. 1 In a study by Wykle and Kaufmann, 2 a learning needs assessment was done to determine what skills nursing assistants believed were necessary in their job performance. Survey results of 192 matrix questionnaires, consisting of 100 questions designed to assess learning needs in expected areas of work skill proficiency, revealed that the No. 1 item identified as very necessary on the patient care skill list was communication skills. One of us (D.N.R.) designed a communication skills program for caregivers of AD patients. This 7-step program used the acronym FOCUSED to identify the major elements for communication maintenance (face-to-face, DANIELLE N. RIPICH, PhD, is an associate professor and chair of the Department of Communication Sciences, Case Western Reserve University. MAY WYKLE, PhD, is a professor and associate dean at the Frances Payne BoRon School of Nursing, Case Western Reserve University. SHEILA NILES, MA, is a program manager with the Visiting Nurse Association of Cleveland. GERIATR NURS 1995;16: Copyright 1995 by Mosby-Year Book, Inc /95/$ /1/51284 orientation, continuity, unsticking, structure, exchanges, and direct). This program was based on an interactive discourse model of conversational exchanges. 3"5 Itwas designed to provide caregivers with information regarding AD and communication breakdowns. Table 1 shows the strategies used to accomplish the FOCUSED communication maintenance program. The purpose of this project was to develop and test didactic materials that would better prepare nursing assistants to communicate with AD patients. The specific aims of the program were to educate nursing assistants regarding: 1. AD and the associated communication and language decline 2. The differences among normal forgetting, depression, and AD 3, Interpersonal skills and the value of such skills in the care of residents with AD 4. The cultural and ethical considerations involved in the communication process with AD residents 5. The stages of AD and concurrent communication characteristics, including how to assess and recognize patients at each stage and maximize their communication 6. The use and evaluation of FOCUSED communication strategies and techniques for promoting effective communication (verbal and nonverbal) between nursing assistants and residents with AD Method Subjects. The participants were 17 nursing assistants (16 women, 1 man) employed in a long-term care facility in Cleveland, Ohio. Table 2 shows demographic information for participants. GERIATRIC NURSING Volume 16, Number 1 Ripich, Wykle, and Niles 15

2 TABLE 1. FOCUSED COMMUNICATION STRATEGIES F = Face to face O = Orientation C = Continuity U = Unsticking S = Structure E = Exchange D = Direct 1. Face the patient directly. 2. Attract the patient's attention. 3. Maintain eye contact. 1. Orient the patient by repeating key words several times. 2. Repeat sentences exactly. 3. Give the patient time to comprehend what you say. 1. Continue the same topic of conversation for as long as possible. 2. Prepare the patient if a new topic must be introduced. 1. Help patients become "unstuck" when they use a word incorrectly by suggesting the word they are looking for. 2. Repeat the patient's sentence using the correct word. 3. Ask, "Do you mean...?" 1. Structure questions to give the patient a simple choice to respond with. 2. Provide only two options at a time. 3. Provide options that the patient would like. 1. Keep up the normal exchange of ideas we find in conversation. 2. Begin conversations with pleasant, normal topics. 3. Ask easy questions that the patient can answer. 4. Give the patient clues as to how to answer. 1. Keep sentences short, simple, and direct. 2. Use specific, concrete nouns, rather than pronouns. 3. Use hand signals, pictures, and facial expressions. Procedures Educational materials. A set of materials was designed to assess learning needs, educate, and assist in the carryover of training program content. The following items were included: I. Trainer's Manual: This manual contained all of the program information provided to the nursing assistants and also included: A. Instructions for pretest and posttest administration B. Questions to be asked to stimulate discussion and test understanding during training C. Role-playing activities designed to simulate everyday patient communication problems D. Clinical assignments E. Program evaluation and self-evaluation forms for assessment of training by participants TABLE 2. DEMOGRAPHIC DATA FOR NURSING ASSISTANT PARTICIPANTS Sex Female 16 Male 1 Age Range N % Range Mean SD Education (years) Experience (years) II. Nursing Assistants" Guide: All materials were written at a sixth grade reading level, according to the Gunning Fog Index of Readability. The guide contained preassessment forms and cards so that each guide could be used multiple times for training. The materials included: A. A preassessment test of current knowledge and attitudes placed in the front cover of the guide B. A text covering the six information content areas: 1. AD and language decline 2. Depression and dementia 3. Importance of interpersonal skills 4. Ethical and cultural considerations 5. Stages of AD and communication 6. FOCUSED program for maximum communication III. Pretest and Posttest Assessments: Assessments of knowledge of AD and communication satisfaction attitudes were used to compare incoming levels of information and new information acquired from this training. IV. FOCUSED Cards: These 2" X 3" cards contained the acronym FOCUSED and served as a reminder of the communication principles taught in the program. V. Videotape Vignettes: An instructional videotape was developed that contained illustrations of various communication problems nursing assistants encounter with AD patients. An actor portrayed the patient, and a nursing assistant acted in the role of a nursing assistant. Trainers were a certified speech= language pathologist and an assistant director of nursing. Training participation. Several strategies for faculty to encourage nursing assistant participation and decrease dropout were adapted from Burnside's group work with the elderly. 6 The strategies were as follows: 16 Ripich, Wykle, and Niles January/February 1995 GERIATRIC NURSING

3 Nursing assistants were notified individually by a flyer. Nursing assistants who were working in the AD unit were given priority. A balance in selected numbers of participants ensured that adequate staff remained on the units. Individuals were personally contacted before class. The importance of attending each class was stressed. A major component of class time was discussion of the weekly homework. During the week faculty made contact with participating nursing assistants to answer questions or discuss their progress using the FOCUSED strategies. (This informal approach decreased group dropout rates.) At the end of the program a reception was held for participants. The project's coinvestigators and the director of nursing attended and presented certificates to participants. Buttons were distributed that stated, "I am FO- CUSED." Nursing assistants were able to wear them on their uniforms. (This further publicized the program as well as increased the nursing assistants' sense of accomplishment.) At the final session, coinvestigators met with the class and discussed the process and carryover of the project. All the nursing assistants received continuing education units for their participation. Training content. The training program, divided into six 2-hour modules, addressed the following: Module 1. AD and the associated communication and language decline. AD, its pathology, and characteristics were described. The problems of communication and language loss were discussed. Examples of communication breakdown were used to illustrate descriptions. Module 2. The differences among normal forgetting, depression, and AD. The nursing assistant was taught to understand normal forgetting in elders, to recognize symptoms of depression, and to differentiate these symptoms from those of dementia. Discussion of the effects of depression on the AD patient's already decreasing ability to communicate with others was included. Module 3. Interpersonal skills and the value of such skills in the care of residents with AD. The critical importance of social communication as it relates to the activity theory of aging in the care of AD patients was discussed. The results of surveys and research demonstrating the value of good communication in perceived quality of care and life were also presented. The need for AD patients to remain engaged in human contact to prevent premature or excessive functional communication disability was addressed. A discussion of empathetic sensitivity provided a foundation for promoting sensitive interpersonal exchanges that demonstrate respect for the demented patient and support the self-esteem of both the nursing assistant and the AD patient. 7 Module 4. The cultural and ethical considerations involved in the communication process with AD residents. Ethical and cultural considerations are extremely important issues in helping the nursing assistant sort out the ethical dilemmas involved in caring for AD patients. The conflicts that arise in a caregiving situation may be fur- BOX 1. STAGES OF COMMUNICATION DECLINE Stage I: Stage Ih Stage IIh 1. Cannot find words or names. 2. Long pauses and slower responses. 3. Digress from topic. 4. May self-correct or apologize for communication failures. 1. May ask you to repeat several times before they understand you. 2. Cannot follow simple directions, unless coached. 3. Loss of factual knowledge. 4. Cannot recall familiar words or names. 1. Naming seriously impaired, so vocabulary is very limited. 2. Cannot understand simple words. 3. May talk or babble excessively but without meaning. 4. May withdraw and not speak at all. ther complicated by the differences in cultural and socioeconomic backgrounds of nursing home residents and nursing assistant staff. The resultant disparity in values and interpersonal dynamics accentuates the communication difficulties that are characteristic of AD patients. Therefore didactic and experiential content that enhanced the nursing assistants' understanding of ethical and cultural considerations that affect the interpersonal communication process were presented. Module 5. The stages of AD and concurrent communication characteristics, including how to assess and recognize the patient at each stage and maximize their communication. The literature reports three main levels of language deterioration, designated as mild, moderate, and severe. These stages have transitional phases between them that mark the specific changes in patients' capacity to communicate. These stages were described, and guidelines were given for: Assessment and recognition of stages Communication strategies to maximize rapport at each stage Methods of nonverbal and verbal interaction that enhance patient caregiver feelings of successful contact Characteristics listed in Box 1 were used to help nursing assistants recognize each patient's stage of communication decline: Module 6: The use and evaluation of FOCUSED strategies and techniques for promoting effective communication (verbal and nonverbal) between nursing assistants and residents with AD. The 7-point program was presented along with examples and illustrations relevant to each of the three stages of communication decline. The program was designed to incorporate strategies into a framework that is easy to recall and apply. A series of role playing exercises and videotaped vignettes were used to demonstrate the 7 points of this communication enhancement program. The following is an outline of the 7 points: GERIATRIC NURSING Volume 16, Number 1 Ripich, Wykle, and Niles 17

4 F Functional and face-to-face O Orient to topic C Continuity of topic--concrete topics U Unstick any communication blocks S Structure with yes/no and choice questions E Exchange conversation--encourage interaction D Direct, short, simple sentences After presentation of the 7 points in the FOCUSED program, a discussion of how its implementation would differ for patients in each of the three stages of AD was presented as follows: Stage L Communication goal: Maintain communication in as nearly normal ways as possible. These patients could benefit from all 7 points in the focused program. The use of these strategies to keep patients engaged may have the added benefit of improved morale and overall mental status at this stage of the disease. Stage II. Communication goal: Maintain turn-taking exchanges and the form of conversations, even if communication content is confused. Some patients will be seriously compromised by this stage. All 7 points of the FO- CUSED program are still relevant, but maintaining an exchange pattern of shared interaction is critical. Although the topic is often not followed by AD patients, or their speech and language is confused and fragmented, it is important that the form of human communication (i.e., TABLE 3. PRETEST AND POSTTEST KNOWLEDGE PERCENTAGE SCORES CORRECT Pretest Posttest % Module % % Change Total mean turn-taking patterns) be continued. Turn taking requires the cooperation of both conversational participants. Even if the AD patient's turn merely consists of a nod or making eye contact, it signals engagement in an interaction. Stage IlL Communication goal: Maintain communication through residual channels (e.g., nonverbal gestures, key written words, pictures). Even when the AD patient no longer speaks, the nursing assistant should continue to use the FOCUSED principles when communicating. And particular attention should be given to alternate forms of communication. For example, using cards with single words ("bathroom," "ice cream"), pantomime (hands under head to show sleep), and pictures of family members may sometimes stimulate patients to interact. The patient's communication may be only a nod or a smile, but when contact is made that is successful communication. Training. Six weekly group sessions 2 hours long were held at the nursing home. Brief lectures, role playing, discussion, and videotaped vignette analysis were used as training strategies. Both trainers attended all sessions. Evaluation of program objectives. Evaluation of the training objectives was developed using Stufflebeam's method of assessing content, input, process, and product of the program. 8 The use Of Stufflebeam's model provides a mechanism for the proposed program at all stages, including the planning phase, allowing for adjustments, if necessary, of program content and planning strategies. The evaluation was based on the learning objectives for each of the training program modules. Nursing assistants were given pretests and posttests for didactic classes. They also were expected to complete a self-evaluation relative to their progress in the training program. Follow-up program outcome testing occurred 6 months after completion of the usefulness of the Nursing Assistant Guide and the Trainers Manual. Trainers and clinical faculty were involved in the evaluation process throughout program implementation and outcome assessment. Results and Discussion Results of comparisons of pretest and posttest knowledge measures are found in Table 3. These results show TABLE 4. PRETEST AND POSTTEST ATTITUDE SURVEY PERCENTAGE SCORES Pretest % responses Posttest % responses Question A B C A B C * *Significant p ~ N.B.: Multiple-choice answers of "C" indicate more positive attitudes. 18 Ripich, Wykle, and Niles January/February 1995 GERIATRIC NURSING

5 increased knowledge across all areas with significant (p < 0.001) gains in Modules 5 and 6, which present the FOCUSED program. This is somewhat predictable, given the specific nature of the FOCUSED training information. Nevertheless, results suggest marked gains in information regarding communication strategies. Results of the attitude survey shown in Table 4 generally indicate improvement in attitudes toward AD patients. Significant changes (p < 0.001) were shown on question 1 regarding communication satisfaction with AD patients. There was a doubling in the percentage of nursing assistants reporting that they found communicating with AD patients more satisfying compared with other patients. Anecdotal comments from participants suggest that this training provided them insight into the problems AD patients were experiencing. They reported a greater "feeling of control" during conversations with AD patients, contrasted with the frustration and inability to communicate they had felt previous to the training. Their newly acquired skills made it more likely they would try to communicate with an AD patient instead of ignoring or patronizing them. The new enthusiasm of the nursing assistants regarding the importance of good communication was noted by a number of their supervisors. Summary The FOCUSED communication skills program appears to increase knowledge and improve communication satisfaction for nursing assistants caring for AD patients. Findings from this study suggest that education in spe- cific communication strategies may alter attitudes toward patients. Providing caregivers adequate training is essential to ensure quality care and service delivery. Additional benefits may be caregivers' greater satisfaction and sense of accomplishment in their critical day-to-day activities. These results suggest that nursing assistants and informal (family) caregivers can benefit from training in communication strategies and that this training may improve the quality of life for AD patients. While this study addressed only the training of nursing assistants, the specificity of the program lends itself to training of informal, in-home providers as well as institutional caregivers. Supported by NIH-NIA grant #AG REFERENCES 1. Bayles K. Management of neurogenic communication disorders associated with dementia. In: Chapey K, ed. Language intervention strategies in adult aphasia. Baltimore: Williams & Wilkins, Wykle M, Kaufmann M. The teaching nursing home experiences: Case Western Reserve University, Frances Payne BoRon School of Nursing, and Margaret Wagner House of the Benjamin Rose Institute. In: Walsh MB, Small NR, eds. Teaching nursing homes: the nursing perspective. Owings Mills, Maryland: National Health Publishing, Terrell B, Ripich D. Discourse competence as a variable in intervention. In: Wilcox J, ed. Seminars in speech and language. Aphasia 1989;10: Ripich D. Differential diagnosis and language in dementia. In: Lubinsky R, ed. Dementia and communication research and clinical implications. Philadelphia: BC Decker, Ripich D. Communication decline in dementia. In: Ripich D, ed. Handbook of geriatric communication disorders. Austin, Texas: ProEd Press, Burnside I. Working with the elderly: group processes and techniques. 2nd ed. Monterey, California: Wadsworth, Egan G. The skilled helper--a systematic approach to effective helping. Belmont, California: Brooks/Cole, Stufflebeam DL. Educational evaluation in decision making. Itasco, Illinois: FE Peacock, "Quote... The responsibility of the nurse is not to make people well, or to prevent their getting sick, but to assist people to recognize the power that is within them to move to higher levels of consciousness. --Margaret A. Newman, PhD, RN, FAAN Health as Expanding Consciousness... Endquote" GERIATRIC NURSING Volume 16, Number 1 Ripich, Wykle, and Niles 19