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What do brain dysfunctional patients report following memory compensation training?

George P. Prigatano, Susan Kime

Journal of NeuroRehabilitation
VOLUME 18, NUMBER 47-55, 2003
Copyright© IOS Press
Reprinted with permission

What do brain dysfunctional patients report following memory compensation training?

Abstract-Twenty five (25) out of 29 patients (86%) with unequivocal memory disorders who received Memory Compensation Training (MCT) completed both a brief survey regarding their use of memory compensations and the Memory Compensation Questionnaire. Twenty-two (22) of the 25. patients (88%) reported daily use of memory compensation several months to years after the onset of their memory problems. The benefits included, by their report, being more productive, less disorganized, and less confused. Patients with memory disorders, who received MCT, also reported more frequent use of compensations than older normal adults studied by Dixon et al. [6]. The present sample of patients report proportionally spending more time to remember and greater reliance on those around them to help them to remember. The findings suggest that patients who are taught memory compensations tend to use them after the training period and show a different pattern of compensatory activities compared to normal older adults.

Keywords: Memory disorder, Memory Compensation Training, subjective reports, use and benefits of compensations

1. Introduction

Memory disorders are perhaps the most prevalent neurocognitive complaint following various brain injuries in adults. They can range from dense amnestic syndromes [16] to mild disturbances in learning and memory following traumatic brain injury (TBI) [9]. Surveys which specifically ask patients about residual disturbances note memory complaints are common, especially after TBI [17,25]. They have also been noted in patients with ruptured anterior communicating artery aneurysms [4], malignant brain tumors [15], cerebral vascular accidents [18], temporal lobe epilepsy [7], and, of course, the various dementias [26]. They are also observed in some patients with multiple sclerosis [3]. Efforts at cognitive retraining for memory and related disorders frequently stress the importance of compensations to alleviate the impact of the disturbance on daily functions [24,27,29,31]. Over the years, both "external" and "internal" strategies for compensating for memory disturbances have been suggested [2,5,1012,30-32]. The number of compensations patients use after brain injury appears to relate to their level of independence[28].

Patients vary, however, in their ability to benefit from various forms of memory compensation training (MCT). Level of impairment, awareness of deficit and the need to use compensations, as well as motivation, may impact performance [19,31] Also, the methods of compensation used may vary from one person to another and have differential effects following brain injury [8,12,14,33]. Prigatano, Amin, and Jaramillo [21] noted that using compensations did not always relate to improved performance after TBI, but frequently tended to correlate with improved performance in normal individuals.

In the context of holistic, milieu oriented neuropsychological rehabilitation programs, teaching patients memory compensation skills has often resulted in improved independence for the patient [12,19]. However, much depended on the patient's willingness to use compensation strategies in their day to day life and the capacity of the therapist to make the compensatory techniques easy to use and meaningful to the patient in their day to day existence.

Over the last several years, the authors have had the opportunity of working with patients not enrolled in a day treatment neuropsychological rehabilitation program, for whom MCT was still provided. Subsequent to their treatments, patients were contacted regarding their perceived usefulness of the memory compensation techniques they were taught. Patients were also asked to complete the Memory Compensation Questionnaire (MCQ) developed by Dixon, B ackman, and colleagues [6]. The attempt was to determine if brain dysfunctional patients report similar patterns of compensations used by older, non-brain dysfunctional individuals. This may be an important question to ask, since it potentially provides insight into why some compensations are readily used by patients and others are not.

Also in this latter regard, it is interesting to note that Dixon et al. [6] report a highly consistent pattern of findings regarding the use of compensations in a normal aged Canadian population. Using the MCQ, they report on "five scales representing different aspects of every day compensatory processes" (p. 651). The MCQ items asked patients how frequently they use "external" versus "internal" compensatory techniques; the effort and time spent using such techniques; and finally, the degree to which the person might rely on another to help them remember information. The authors attempted to determine if brain dysfunctional patients who are taught memory compensation techniques showed a similar pattern of self-report compensatory behaviors in their daily life.

2. Methods

2.1. Subjects undergoing memory compensation training (MCT)

Twenty-nine (29) brain dysfunctional patients seen between 1993 and 2001 by the senior author (GPP) were referred for MCT to an experienced occupational therapist (second author, SK). These patients werc initially seen for a neuropsychological evaluation because of memory complaints. Their neuropsychological test findings provided unequivocal evidence of memory impairment (see below). These patients attempted MCT to determine if they could find ways to partially remediate the impact of the memory deficits on their daily functioning.

Table 1 lists the age, education, handedness, gender, diagnosis, and occupation of patients at the time they entered MCT. Of the initial 29 patients who received MCT, three patients were lost to follow up and one was deceased. For the remaining 25 patients, the mean age was 43 years (S. D. = 10.0; range 26-60). The educational and occupational histories were quite varied, ranging from high school training to graduating medical school with residency training in surgery. Twenty-one were right-handed (84%) and four were left-handed (16%). Ten were female (40%) and 15 were male (60%). Time since onset of brain injury to obtaining this follow up information ranges from 8 months to 291 months, with a mean of 53 months (i.e., 4 years and 5 months). Thus, as a group, these patients were clearly "post acute."

Various types of brain disorders were represented in this patient group that included moderate to severe TBI as judged by the admitting Glasgow Coma Scale score and computed tomographic and magnetic resonance imaging findings (10 out of 25, or 40%); ruptured aneurysms, arteriovenous malformations, cerebrovascular accidents, and cavernous malformations (6 out of 25, or 26%); malignant brain tumors (2 out of 25, or 8%); nonmalignant brain tumors (1 out of 25, or 4%); hydrocephalus (3 out of 25, or 12%); multiple sclerosis (1 out of 25, or 4%); cerebral anoxia (1 out of 25, or 4%); and one patient with a history of bipolar disorder with associated memory difficulties (4%).

As a part of their initial clinical neuropsychological examination, various psychometric measures were obtained. They included the Wechsler Adult Intelligence Scale-Revised form (WAIS-R) or the Wechsler Adult Intelligence Scale-3rd Edition, and portions of the Wechsler Memory Scale-Revised form (WMS-R). The average WAIS-R or WAIS-III Full Scale Intelligence Quotient (IQ) for this group was 101.7 (S.D. = 15.8) with a Verbal IQ of 102.6 (S.D. = 17.2) and a Performance IQ of 100 (S.D. = 13.11). Scores for the Full Scale IQ, however, range from as low as 77 to as high as 136. On the WMS-R form, the mean percentile ranking for Logical Memory I was 36.2 (S. D. = 23.0) and for Logical Memory II was 25.6 (S. D. = 20.2). Percentile rankings for Visual Reproduction I was 56.1 (S.D. = 28.9) and for Visual Reproduction II was 34.08 (S.D. = 34.2). While IQ values were average, the delayed recall of both verbal and nonverbal information approached the lower 25 to 35 percentile. As a group, they presented with memory impairments relative to intelligence.

These memory impaired patients were asked to complete the Patient's Competency Rating Scale and the relatives completed the relative's version of this scale [20]. This scale consists of 30s item in which the person is asked to rate level of difficulty in carrying out a wide variety of daily activities. Factor analytic studies reveal the item sample activities of daily living, cognitive skills, and social emotional functioning [13]. The responses to items dealing with memory difficulties (items 10, 11, 12, and 13) were analyzed to briefly assess the patient's awareness of memory difficulties relative to the relative's report. In addition, patients' response to a question regarding their ability to understand new instructions (item 25) was also analyzed to determine if it related to using memory compensations.

2.2. Procedures involved in the MCT for each patient

The general procedures for teaching patients to compensate for memory difficulties using a memory note book system are described by Kime et al. [ 12], Sohlberg and Mateer [23], and Burke et al. [2]. For each patient, however, the process has to be individualized. The method of doing this was as follows. Prior to meeting the patient, neuropsychological test results obtained in the patient's medical records were reviewed by the treating clinician (second author, SK). The second author (SK) then met with each patient and family member, if available. The patient was asked to bring any compensations that they were currently using. At this initial meeting, current compensations (if any) were reviewed to determine their effectiveness. A key aspect to this first assessment was determination of areas of daily living/work in which the patient was having difficulty (i.e., home, work, both, etc.). Before this session ended, a recommendation was made regarding the type of date book that the patient should purchase. For example, a patient with complex job functions (such as a physician) and a mild memory impairment might require a full size date book with sections including daily and monthly calendars, checklists, and to-do lists. A different nonworking patient with severe memory impairment may need only to track appointments, medications, and daily chores, which could be accomplished using a small date book with weekly pages only.

The second session focused on customizing the patient's notebook to address their particular problem areas. This included such activities as tracking appointments, to-do lists, functional checklists, and forms, etc. At this meeting, the goals of the treatment and the roles of each person (patient, family, coworkers, therapists) were also defined. The initial goals varied from a basic ability to keep the datebook with them at all times, to management of a complicated work environment. The second session typically ended with the patient and family being given exercises designed to help them start effectively using the date book. This might include: (a) cueing the patient at regular intervals to ensure they have their date book, (b) monitoring the patient's entries into the date book to ensure they are correctly placed and clearly stated, and (c) ensuring the patient checks off tasks on the daily pages and to-do lists as they are completed.

The next step (or sessions) took place at the patient's home or work site. Direct observation of the patient in the environment where they are using the notebook is an important part of MCT. Additional sessions typically began with a thorough review of the patients' use of the date book since the previous session. All entries were reviewed for accuracy, placement in the book, and follow through.

An important feature of the MCT was also to include people in the support network (family, coworkers, and supervisors), who would encourage the use of the date book. Modifications to this basic approach were made as needed per each individual situation. Thus, in many ways, the MCT training was customized, although the basic format remained the same.

The importance of treating the patient at the home or work site for each patient cannot be overstated. It provided a clear picture of what compensations were, in fact, working well and which had to be modified.

Other sessions were held either at the office or home/work site depending on the individual patient's needs. The frequency of the sessions varied from as little as once a month to several times a week. Typically each patient session was followed up by a phone contact in order to make contact with the patient, family, and work supervisor to ensure continued success.

Table 2

Frequency distribution of answers patients had to the question: "What

are you now able to do because you used memory compensations?"

Responses                                      No. Patients

1. More chores done/productive           8

2. Better organized less confused         5

3. Make meetings/appointments            4

4. More time efficient                           3

5. Tracking information                        3

6. "Getting through the day"                  1

7. "Less frustrated"                               1

*Responses based on 22 patients who stated that they used memory compensations in their everyday life. * Some patients volunteered more than one response, therefore, n = 25 versus 22.

2.3. Time spent in MCT and associated costs

Time spent teaching patients MCT was quite varied, ranging from as low as 1 hour of training to as high as 72 hours. The total time working with the original 29 patients was 400 hours. For the 25 patients for which follow up data were available, the total time was 322 hours (mean, 12.88 hours). The average charge per patient was $1,932; the actual estimated fees collected were approximately 70% of that, or $1,352 per patient.

2.4. Data collection for the present project

As indicated above, an attempt was made to contact each patient by phone. Only 25 of the original group of patients (86.2%) were actually contacted and follow up information obtained. Patients were asked whether they were working or not working, and whether or not they found memory compensation strategies helpful to their day-to-day life. They were also asked the question: "What are you now able to do because you use memory compensation?" Following this brief questionnaire/survey, patients were administered, over the phone, the MCQ (described by Dixon et al.) [6] by the second author. Details concerning this questionnaire can be found in Dixon et al. [6]. Each question on the scale asked the individual to rate the frequency they perform a given memory compensation behavior (1 = never, 2 = seldom, 3 = sometime, 4 = often, and 5 = always). This scale inquires about the use of external memory aids (External), the effort the individual puts forth in using memory aids (Effort), the use of internal memory strategies (Internal), extra time spent in using memory aids (Time), and finally, the reliance the individual has on others to help them remember (Reliance).

2.5. Statistical analysis

All demographic, psychometric, and questionnaire data were analyzed using SPSS computer software. Means, standard deviations, and appropriate t tests for statistical significance were conducted. T tests were two-tailed. Variance between sub samples were not significantly different and therefore t tests were calculated assuming equal variance.1

2.6. Comparison with Dixon et al. [6] data

No formal control group was used in this study. As noted above, however, an effort was made to compare how patients who receive MCTA respond to this questionnaire to normal aging adults. Therefore, their data were compared to the Dixon et al. normative sample data (see Fig. 1).

3. Results

3.1. Survey findings

When asked the question: "Do you find that in your everyday life you do rely on memory compensations to get through a typical day?," 22 out of the 25 participants (88%) answered yes, and three out of the 25 (12%) answered no.

When asked the open-ended question: "What are you now able to do because you use memory compensations?," a variety of answers were given to this open-ended question. Some patients spontaneously mentioned more than one achievement. Table 2 lists the frequency of the various responses obtained by the 25 patients for which follow up information was obtained. By far, the most commonly mentioned achievement was that the individual was more productive and able to accomplish more activities during the course of a day. Next, they mentioned that they were more organized and tended not to miss meetings or appointments. Related to being more organized, patients spontaneously mentioned that they were now less "confused". One patient specifically mentioned being "less frustrated".

3.2. Memory compensation questionnaire (MCQ) findings

To remind the reader, this questionnaire asks patients to indicate how frequently they use some memory compensation (never = 1, seldom = 2, sometimes = 3, often = 4, always = 5). Figure 1 illustrates the group findings. An average rating of 4.1 (= often) was reported in use of external compensations (S. D. = 0.85). A similar mean rating was given for putting forth considerable effort in remembering information (mean = 3.8, S.D. = 0.68). The use of internal memory strategies (such as using "memory tricks" or taking one's time or planning ahead) was reported with a mean of 3.17 (S.D. = 0.61). This indicates, as a group, they "sometimes" engaged in this activity.

Interestingly, when asked about going more slowly or taking more time to remember, this group of brain injured patients gave a mean rating of 3.39 (S.D. = 0.75), indicating that they do this somewhere between "often" and "sometimes." This is a different pattern than what is reported in older normal adults, as reported by Dixon et al. [6].

Finally, when asked about the frequency of relying on others to help remind them of things they must do, this group of patients reported a mean rating of 2.88 (S.D. = 1.9). As a group, the average response is close to saying they do this "sometimes."

Figure 1 superimposes the recently reported Dixon et al. [6] normative data (with permission) obtained from males between the ages of 58 to 64 years of age (mean, 62 years, S.D. = 1.41) with our patient group. Note that although this comparative group is nearly 20 years older on average, they report using "external" memory aids "sometimes". Exerting extra effort to remember is rated between "seldom and sometimes". Using internal strategies on the average is "seldom used" and they "seldom" take extra time to remember what they want to remember. Finally, on the average, they are very close to "never" relying on others to help them with their memory.

Thus, to summarize differences between this group of brain injured patients and the normative data reported by Dixon of al. [6], brain injured patients who completed the MCT not only report greater frequency of using external and internal memory compensations, but they report putting forth more effort in doing so. Also, they report taking more time to remember things. These findings are perhaps not surprising, but they are important in our understanding about how patients actually go about using memory compensations to improve their day-to-day functioning.

3.3. MCQ findings inpatients working versus not working

Given the above findings, it is of some interest to determine if patterns of self-reported compensations differ in those patients who are working versus not working. In the present sample, 12 out of 25 (48%) of the patients reported working; 13 out of 25 (52%) reported not working at time of follow-up. Working patients had slightly higher Verbal IQ scores (110.1; S.D. = 17.5) compared to not working patients (mean = 98.5; S.D. = 14.05; t = 1.80; d. f. = 22; p = 0.08), but did not differ on any of the psychometric tests. Interestingly, however, when patients were asked on the Patient Competency Scale, about their ability to follow instructions, working patients reported better understanding instructions than nonworking patients (t = 2.86, d. f. = 21; p = 0.009).

The mean ratings on the MCQ for the working and nonworking patients were not statistically different.

3.4. MCQ ratings and working alliance

Since working alliance has been shown to relate to productivity status [22], mean ratings on the MCQ were compared with the 20 patients rated as having a good or excellent working alliance with the therapist, versus the 5 patients who were rated as having a poor or fair working alliance (for rating system, see Prigatano et al., 1994) [22]. These patients did not differ on IQ values or any other psychometric or demographic variable. The mean ratings on the MCQ between these two patient groups were not significantly different.

3.5. Awareness of memory deficits, MCQ findings, and other group comparisons

Patients who report better memory skills than families report on the Patient Competency Rating Scale (PCRS; using items 10, 11, 12, and 13) were compared to patients in which the patient and family ratings were essentially equal or the family rated the patient as more competent on memory tasks that what the patient re-ported. Six patients fell in the first group (the unaware group), and 19 patients fell in the second group. Again, there were no differences on any of the MCQ scales, but other differences were noted.

The patients who tended to overestimate their memory competency compared to families' report scored worse on the Logical Memory II subscale of the WMSR. Their mean score on the Logical Memory II was a percentile ranking of 13.8% versus a percentile ranking of 30.3% for the group that appeared to be more aware (t = 2.20, d. f. = 22, p = 0.04).

Patients who were unaware of their memory difficulties and actually scored worse on one measure of memory performance received less compensation training. Their mean hours of MCT was 6.5 hours (s.d. = 5.02) versus 16.7 hours (s.d. = 19.1) for the patients who seemed to more aware of their memory difficulties. This also seems to mirror everyday clinical practice. Patients with worse memory scores and poor insight often are not able to sustain efforts at MCT.

4. Discussion

Brain dysfunctional patients are commonly taught to use memory compensation strategies as a part of cognitive rehabilitation. Twenty-five (25) out of 29 brain dysfunctional patients, who had been taught memory compensation skills without having undergone extensive neuropsychological oriented rehabilitation, were asked what impact the memory compensation strategy training had on their lives. The majority of patients (88%) surveyed reported that they presently used memory compensation strategies, and such strategies helped them to be better organized and keep meetings and appointments that they might otherwise miss. They report being more productive as a result of using memory compensations. This is compatible with our clinical experience. The tone of their responses indicates that they are less confused and less frustrated as they used memory compensations. This clearly is the first goal of neuropsychological oriented rehabilitation [19].

It is recognized, however, that a limitation of the present study is that the treating clinician asks patients to answer survey questions. This potentially could bias their reports. Future studies should obtain such follow up information by individuals other than the treating clinicians. It would also be important to study brain dysfunctional patients who did not receive any form of MCT and determine to what degree they spontaneously use memory compensation several years post injury.

It would be interesting to determine if these patients report greater frustration and confusion compared to patients who receive MCT. We would anticipate this finding.

It should be noted that the average cost of MCT was $1,352 per patient. Future studies might explore the cost-effectiveness of this type of treatment in simply reducing the confusion and frustration associated with severe memory impairment.

4.1. MCQ findings

Patients who received MCT report using memory compensations at a higher frequency than normals over 20 years their senior. This finding, however, has to be replicated, particularly with normals in their own age range and in their own environment. We would anticipate, however, similar results. Clinically, many brain dysfunctional patients use more compensations for memory failures than do normals. However, those compensations may not always be helpful. They require extra time and good organizational skills. Even with the extra amount of time spent, the level of achievement may bee less than existed premorbidly. This factor can influence patients' satisfaction with life and their ability to accomplish meaningful goals.

Working patients did not substantially differ from nonworking patients in their reported use of compensations on the MCQ. Clinically, we do believe that patients who are able to work frequently use memory compensations in an effective manner. Future studies should specifically explore how this is accomplished.

Patients who had a good versus poor working alliance with the treating clinician also did not differ in their reports on the MCQ. It should be noted, however, that only five out of the 25 patients studied were considered to have a poor or fair working alliance with the therapist. Larger sample sizes may result in some differences.

Patients who show impaired awareness of their memory difficulties, as measured by their ratings on the PCRS, also did not differ in their MCQ ratings. Interestingly, however, they received less hours of MCT training. While there may be many reasons for this, two reasons are probable. First, patients who have poor awareness fail to see the need for MCT and therefore are not willing to commit more hours for training. Also, the treating clinician may become discouraged with patients who are resistant to using MCT because of their impaired awareness. It is certainly a complicated problem, but one that needs to be further explored. As

Bach-y-Rita and Bach-y-Rita [1] have noted, the learning process after brain injury is slow and arduous. It is important that clinicians keep this in mind. Patients can change in their level of awareness with time. Clinicians should constantly be trying to engage them in the use of any compensatory technique. that may help them in their day to day functioning. As patients begin to slowly recognize the benefit of MCT, they can become more motivated to use compensatory techniques.

4.2. Clinical impressions about the usefulness of MCT

Given our clinical experience, it may be helpful to specifically list the types of patient characteristics that appear to be related to successful use of MCT. Patients who have good awareness of deficit and the impact of their deficit on day to day lives spend more time in MCT training as noted above. They often are acceptant of their condition. They often were organized in how they went about daily tasks prior to their injury. Therefore, they are used to using various organizational tools and do not find it in any way an imposition. Such individuals often have a clear work ethic and a strong social support group. They are patients who frequently use memory compensation techniques to deal with daily responsibilities that can, in fact, be helped by the type of MCT provided. If their job requires them to carry out responsibilities (such as attending multiple meetings) then the MCT method is exceptionally useful. If their job requires them to engage in activities that cannot be managed by MCT, they are, of course, much less interested in using such techniques.

Characteristics of patients who do not benefit from MCT are essentially the reverse of what was just noted. They typically have poor awareness of their deficits and/or are denying their limitations. They have difficulty accepting the changes that the brain injury imposed. They are less organized and perhaps more immature prior to their brain injury. They have less clear goals, less of a social support group, and often are in more emotional distress than the former group. They also seemed to be more rigid in how they approached any task.

These impressions are, in fact, sketchy. They are offered in the spirit of helping other clinicians be alert to factors that may influence the capacity of their patient to successfully use MCT techniques.

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