Adaptational Approach to Cognitive Rehabilitation in Multiple Sclerosis: Description of Three Models of Care

Adaptational Approach to Cognitive Rehabilitation in Multiple Sclerosis: Description of Three Models of Care Päivi Hämäläinen, PhD; Arja Seinelä, MA; Juhani Ruutiainen, MD Masku Neurological Rehabilitation Centre Finland Abstract Cognitive deficits are among the most harmful symptoms in multiple sclerosis (MS). Neuropsychological assessment methods have been extensively developed in MS, but rehabilitation of cognition is still in its infancy. At the Masku Neurological Rehabilitation Centre, we have developed 3 models of neuropsychological group rehabilitation in MS. 1. Information/family weekends for MS patients who are concerned about cognitive deficits 2. 1-week inpatient cognitive rehabilitation courses for MS patients and their spouses 3. 3-week inpatient cognitive rehabilitation courses for MS patients We used an adaptational approach to help participants live with cognitive impairments. Instead of retraining affected cognitive functions, we tried to help patients find better ways of coping with existing cognitive deficits in daily life. The course consisted of information at a general and at an individual level, neuropsychological evaluation and feedback, individual counseling, and group meetings. We evaluated the participants' experiences in the course by means of questionnaires. The participants reported that they received information and support they thought could help them to live with cognitive impairments. The experiences of these participants suggest that these types of rehabilitation interventions may be useful in treating patients with cognitive deficits and their family members. In this article, we report 3 models of care for cognitively impaired MS patients and an evaluation of participants' experiences on these rehabilitation courses. Introduction About 50% of patients with multiple sclerosis (MS) are assumed to have cognitive deficits. 1 The range of methods used to assess and evaluate neuropsychological deficits in MS is relatively wide. By contrast, the battery of interventions to alleviate the effects of cognitive impairments in MS patients is still extremely restricted. It is disputed whether cognitive rehabilitation is of any benefit in MS because (a) the evolution of cognitive impairments in MS is still unclear both progressive deterioration and cognitive preservation have been observed, 2 4 and (b) only a few studies have shown the effects of cognitive rehabilitation in MS. 5,6 Cognitive impairments can have a widespread effect on the psychological well-being of patients and their families. Cognitive deficits may threaten the patient's ability to work and handle other

personal responsibilities. 7 Moreover, cognitive deficits decrease the patient's self-confidence and the feeling of coping in daily activities. Often the reason for not coping with cognitive restrictions seems to be that patients and their family members do not have enough information about the patient's cognitive strengths and weaknesses and about possible ways to alleviate the effects of cognitive impairments. In clinical practice, we have adopted an adaptational approach in the rehabilitation of cognitively impaired MS patients and have included their family members. The intention is to alleviate the problems of living with cognitive impairments by offering information about cognitive deficits at general and individual levels rather than by retraining. The cognitive strengths and weaknesses of each patient are individually assessed by intermediate-length neuropsychological screening, after which feedback on the results is given to the patient and a family member or designee. The aim is to increase the awareness and understanding of cognitive impairments and their effects on daily living. Adaptational courses aim to help the participants achieve a more realistic view of the patient's cognitive strengths and weaknesses and find better ways to cope with the restrictions. Another goal of adaptation training is that the participants can get support and ideas from others with similar problems. Possible compensatory strategies and aids to improve coping with deficits are discussed both individually and in groups. In this article we present 3 different models of cognitive group rehabilitation and evaluate the experiences of the participants on these courses. Description of the Courses Information Weekend for Patients and Their Families An announcement about this course was published in the magazine of the Finnish MS Society. Six families submitted applications; one family was not selected because of the patient's psychiatric problems. Some of the background variables of the participants are reported in Table 1. The course included a lecture about cognitive deficits in MS. During the lecture, the etiology, frequency, characteristics, natural history, diagnostics, and rehabilitation of cognitive impairments in MS were discussed. The families were also given a booklet about cognitive impairments in MS. A neuropsychological evaluation had been performed in 3 of the 5 patients during their individual rehabilitation course at Masku Neurological Rehabilitation Centre within 3 months preceding the course. These patients were not re-evaluated during the weekend. Instead, the 2 patients who had not been assessed previously had a neuropsychological assessment using the Mild Deterioration Battery (MDB; 8 10). The battery consists of 8 cognitive tests; in each cognitive area assessed, the degree of impairments was evaluated (Table 2). The patients also received brief feedback, including a written report about their performance on each of the measures of the MDB. During the weekend, discussion groups were organized for the patients, for their spouses, and for the two groups together. The effects of cognitive deficits on daily living, as well as the ways to best cope with these restrictions, were discussed. The participants were also provided with a list of compensatory strategies and aids for different kinds of cognitive impairments. The youngsters of the families participated in the neuropsychological lecture; during the other adult sessions, the children had their own program, arranged by child minders.

Table 1. Background Variables of the Participants in the 3 Types of Courses Information Weekend 1-Week Course 1997 1-Week Course 1998 3-Week Course Patients (n) 5 6 4 8 Gender (male/female) 2/3 4/2 0/4 2/6 Age (years) 36 50 29 48 49 58 49 62 EDSS * Disease duration (years) Cognitive status Not measured 2.0 6.0 4.0 7.5 2.0 4.5 1 16 2 9 3 10 2 23 Near normal moderate deficits Near normal moderate deficits Near normal moderate deficits Near normal severe deficits Spouses (n) 5 6 4 None Children (n) 6 None None None * EDSS = Expanded Disability Status Scale 11 Table 2. Neuropsychological Assessment (MDB * ) Used in the Courses Cognitive Area Verbal reasoning Attention / working memory Visuomotor performance Visuoconstructive performance Word finding / naming Visual memory Verbal memory Verbal-visual memory Corresponding Test Degree of Impairments WAIS Similarities No/mild/moderate/severe WAIS Digit Span No/mild/moderate/severe WAIS Digit Symbol No/mild/moderate/severe WAIS Block Design No/mild/moderate/severe Naming Time of 20 Objects 8 Benton Visual Retention test 13 * Mild Deterioration Battery WAIS = Wechsler Adult Intelligence Scale 12 PWA = Paired Word Associates No/mild/moderate/severe No/mild/moderate/severe Immediate Recall of 8 No/mild/moderate/severe 30 PWA Immediate Recall of 20 objects 8 No/mild/moderate/severe

The experiences of the participants on the course were evaluated by means of a self-rating questionnaire. The participants were asked to comment on their overall sense of having benefited from the weekend. They were also asked to rate their feelings about the effects of the course on their awareness of their own or their spouse's cognitive strengths and weaknesses, on their ability to adapt to living with cognitive restrictions, on their use of cognitive aids, as well as the possible effects of the intervention on their daily life. The spouses were also asked to evaluate whether the course had possible effects on their understanding of the patient's cognitive problems. The questionnaire was distributed to the participants at the end of the intervention and 3 months later. The patients evaluated the effects of the weekend by means of a 5-centimeter visual analogue scale, the extreme left (0) meaning no effect, the extreme right (5) meaning a remarkable effect (Table 3). Table 3. Examples of Questions Assessing Participants Experiences on the Course Ratings for the Patients I think the course has had an effect on my awareness of my cognitive strengths and weaknesses. I think it is easier for me to cope with cognitive problems after the weekend. I have benefited from the course. Visual Analogue Scale (5 cm) Effect 0 5 None Remarkable Ratings for the Spouses I think the course has had an effect on my awareness of my spouse's cognitive strengths and weaknesses. I think it is easier for me to cope with my spouse's cognitive problems after the weekend. I have benefited from the course. One-Week Inpatient Cognitive Rehabilitation Course for Patients and Their Spouses We have run five 1-week inpatient cognitive rehabilitation courses. The two most recent courses have had the same program and are reported here. Each time, an announcement of the course was published in the magazine of the Finnish MS Society. We tried to select applicants who seemed to have the greatest need for help in living with cognitive problems. Some of the background variables of the participants are reported in Table 1. The program consisted of a neuropsychological lecture, a neuropsychological assessment (MDB) of the patients, a feedback session for the couple, and individual guidance and counseling as needed. Moreover, there were several discussion groups for patients, spouses, and the two groups together. The neuropsychological lecture and the assessment were similar to those described in the program for the information weekend. The feedback session included discussion of the results of the neuropsychological assessment. The patients were given a written report about their performance on each cognitive function evaluated. During the feedback session, discussion included the difference between the results of the MDB and the patient's and spouse's own views about the characteristics and degree of the patient's cognitive impairments. This discussion was based on the self-rating questionnaire, which the participants had filled in at the beginning of the course (examples of the questions are given in Table 4). The differences between the self-ratings of the patient and those of the spouse were also compared and discussed. We used the questionnaire to show the couples how realistic they

were with respect to the patient's cognitive impairments and how consistent their evaluations were. Also considered in the feedback session were the effects of cognitive problems on the relations between the partners and on family life. The individual guidance and counseling included discussion about reorganizing daily activities and how to take cognitive restrictions and fatigue into account more effectively. The topics of group discussions were similar to those during the weekend course. The emotional effects of cognitive restrictions on patients and also on spouses were, however, discussed more profoundly. In addition to the neuropsychological component, the program consisted of physiotherapy groups and occupational therapy groups, as well as an examination by a neurologist and a lecture on MS. Table 4. Examples of Questions Assessing Patients and Spouses Views of Patient s Cognitive Impairments Ratings for the Patients I think I have reasoning problems. I think I have problems in finding words. I think I have problems in remembering. I think I have problems in concentrating. Visual Analogue Scale (5 cm) Problems 0 5 None Remarkable Ratings for the Spouses I think my partner has reasoning problems. I think my partner has problems in finding words. I think my partner has problems in remembering. I think my partner has problems in concentrating. The questionnaire we used to evaluate the experiences of the participants was similar to that used for the weekend course (Table 3). The experiences were evaluated at the end of the course, as well as 3 months and 1 year later. At the end of the courses, the participants were also asked to answer the same questions as at the beginning of the course concerning the degree of the patient's cognitive deficits (Table 4). We tried to find out whether the course had changed patients' and spouses' views of the patient's cognitive impairments and whether the partners' ratings were more consistent with each other at the end of the course than at the beginning. Three-Week Inpatient Cognitive Rehabilitation Course for MS Patients We organized a cognitive rehabilitation course lasting 3 weeks for MS patients who were concerned about their cognitive deficits. This course was funded by the Finnish Slot Machine Association, as were the two other types of courses. An announcement about the course was published in the MS Society magazine. Eight out of 10 patients who had applied for the course were selected. Some of the background variables of the participants are reported in Table 1. The course program consisted of a neuropsychological lecture, individual assessment, individual feedback and counseling, and 3 group discussion sessions. The content of the neuropsychological program was similar to that of the 1-week course; however, the course was arranged only for the patients. The participants were asked to evaluate the degree of their cognitive impairments at the beginning of the course. The differences between their own evaluations and the results of the

MDB were discussed during the feedback session. For the group discussions, the patients with normal cognition (n=2) or mild impairments (n=2) were classified as one group and the patients with moderate (n=2) or severe impairments (n=2) as another. In addition to the neuropsychological segment, there were individual and group physiotherapy and occupational therapy sessions, lectures by a social worker and a neurologist, a neurological examination, and other programs tailored to the needs of the patient. The experiences of the patients on the course were evaluated using a questionnaire assessing the general feeling of benefit. The effects of the course on patients' awareness of their cognitive impairments were evaluated by comparing their self-ratings about the degree of their cognitive deficits (Table 4) at the beginning and at the end of the course. Evaluation of the Courses Information Weekend for Patients and Their Families At the end of the weekend course, both patients and spouses experienced the course as useful (mean benefit: patients 4.3/5.0; spouses 4.5/5.0). They thought they had obtained new information as well as support to cope with their problems in daily living. According to the patients, the most important benefit was that their awareness of their cognitive impairments increased during the course. For the spouses, the feeling of increased understanding toward the patient's cognitive problems was the most remarkable effect. Some of the patients' experiences on the course are described in Figure 1 and the spouses' experiences in Figure 2. Although most of the participants experienced the immediate effects of the brief course as substantial, it seems that the effects were not stable (mean benefit after 3 months: patients 3.6/5.0; spouses 4.0/5.0). It will be interesting to reconsider the effects again 1 year after the course. Figure 1. The mean effects of the information weekend on patients' awareness of cognitive impairments, adaptational skills, use of aids, and everyday coping at the end of the course and 3 months later (patients' subjective experiences: 0 = no effect, 5 = substantial effect).

Figure 2. The mean effects of the information weekend on spouses' awareness of cognitive impairments, adaptational skills, understanding of cognitive problems, and everyday coping at the end of the course and 3 months later (spouses' subjective experiences). One-Week Inpatient Cognitive Rehabilitation Course for Patients and Their Spouses The experienced benefit from one patient and spouse course (1997) was evaluated at the end of the course, after 3 months, and then 1 year later. The patients' mean benefit score was 4.1/5.0 at the end of the course, 3.9 after 3 months, and 4.3 after 1 year. The mean of the spouses' benefit score was 3.5/5.0 at the end of the course, 4.4 after 3 months, and 4.4 after 1 year. Thus, the feeling of experienced benefit in daily life carried over for at least 1 year. The subjective effects of the course on patients' awareness of cognitive problems, on adaptational skills, on the use of aids, and on daily living 3 months after the course and 1 year after the course are summarized in Figure 3. The equivalent ratings of the spouses are shown in Figure 4. Figure 3. The mean effects of the 1-week cognitive rehabilitation course on patients' awareness of cognitive impairments, adaptational skills, use of aids, and everyday coping 3 months and 1 year after the course.

Figure 4. The mean effects of the 1-week cognitive rehabilitation course on spouses' awareness of cognitive impairments, adaptational skills, understanding of cognitive problems, and everyday coping at 3 months and at 1 year after the course. We also tried to assess the effects of the rehabilitation intervention on the patients' and the spouses' ability to evaluate the patient's cognitive capacities realistically. Either or both of the partners in 8 couples out of 10 evaluated the degree and characteristics of cognitive restriction more realistically at the end of the course than at the beginning of the course. In these couples, the self-ratings were more consistent with the results of the neuropsychological assessment at the end than at the beginning of the course. In one of the couples, the self-ratings were realistic even at the beginning of the course, whereas in another couple, the ratings were more unrealistic at the end of the course than at the beginning. One of the aims of the rehabilitation intervention was to make the couple's view of the patient's cognitive difficulties consistent. When the difference between the patient's and spouse's evaluations at the beginning and at the end of the course was compared, it was found that in 7 out of the 10 couples the evaluations were more consistent at the end than at the beginning of the course. In 2 of the couples, the difference in the evaluations remained stable. In these couples, however, the evaluations were relatively consistent already at the beginning of the course. Three-Week Inpatient Cognitive Rehabilitation Course for Patients The patients were asked to evaluate the benefit experienced, both at the end of the course and after 3 months. The evaluations after a follow-up of 1 year will be ready at the beginning of the year 2000. The mean benefit score at the end of the course was 3.8/5.0 and after 3 months, 3.9. The use of aids for cognitive problems had increased from 2.5/5.0 at the beginning of the course to 3.0 after 3 months. When the results of the neuropsychological assessment and the patients' self-ratings about their cognitive impairments were compared, only 1 out of 8 patients was realistic about her cognitive strengths and weaknesses at the beginning of the course. At the end of the course, five out of 8 patients had a more realistic view of their cognitive capacities than at the

beginning of the course. One patient evaluated his deficits as similar at the beginning and end. Two of the patients with nearly normal cognition evaluated their restrictions as greater at the end of the course than at the beginning. The awareness of patients who had more prominent cognitive deficits increased during the course. However, after 3 months, only 3 out of 8 patients remained totally realistic with respect to their cognitive strengths and weaknesses. Two of them had mild cognitive deficits; 1 had moderate restrictions. Otherwise, patients with normal cognition or mild impairments seemed to slightly overestimate their deficits, whereas patients with more severe restrictions seemed to underestimate them. However, even after 3 months, the patients seemed to experience some benefit from the course: all of them reported that it had been easier to accept and to cope with cognitive deficits in daily life as a result of the course. Discussion In this article, we have reported 3 different models of care for patients who are concerned about their cognitive problems. These courses represent an adaptational approach to the rehabilitation of cognitive impairments. The aim is not to retrain the affected cognitive functions but to give the patients and their family members information and support to help them live with existing problems. In clinical practice, it seems that misconceptions and lack of information often make it difficult to cope with cognitive impairments. We think that it is important that the patients and their family members are aware of the patient's cognitive strengths and weaknesses, that they understand the effects of the deficits on daily life, and that they try to find ways to solve problems aroused by the deficits. It seems that if the cognitively intact partner understands the problems of the patient and is able to take them into account, it is also easier for the patient to cope with cognitive impairments. Offering information and support for MS patients and their family members has, therefore, been the main idea in developing models of care for MS patients who are concerned about cognitive deficits. The experiences we have reported in this article are associated with our attempts to develop models of care for cognitively affected MS patients. One-week cognitive rehabilitation courses for patients and spouses have been organized approximately once a year during the past 5 years. The evaluation of the effects of the courses is based on the participants' subjective feelings of general benefit as well as the possible effects on awareness of cognitive deficits, ability to understand the effects of the impairments, and ability to cope with the restrictions in daily life. Most of the participants have reported that their ability to cope with cognitive deficits has increased after the courses. The most important benefits have been a subjective increase in awareness of cognitive deficits and in understanding of cognitive problems. In fact, greater insight into cognitive strengths and weaknesses is evident in almost all the participants of the 1-week rehabilitation courses: they seemed to evaluate the degree and characteristics of deficits more realistically at the end than at the beginning of the course. How these findings are reflected in daily life is not clear to us since we did not measure it. It would certainly be useful to try to evaluate how the increased awareness, deeper understanding, and better coping abilities affect daily living. The efficacy of this kind of group rehabilitation could be evaluated only by means of more practical evaluations and larger study groups. Whereas 1-week cognitive rehabilitation courses are arranged routinely nowadays, the information weekend and the 3-week cognitive rehabilitation course represent newer attempts to develop models of care for cognitively impaired MS patients. The participants on these 2 courses have experienced them as beneficial: after the course, it has been easier to live with cognitive problems. It seems that the information weekend is especially useful for patients who have not participated in any other rehabilitation course and, therefore, do not have information about cognitive deficits in MS. The information weekend is suitable for families who do not have time for a longer course or have problems in arranging child care. The 3-week rehabilitation course was arranged for single MS patients who were not eligible to participate in family

courses. This longer course seem to be useful for patients who have problems in coping with daily activities due to cognitive as well as other restrictions and, therefore, benefit from multidisciplinary rehabilitation. Table 5. Steps to Help Live with Cognitive Impairments 1. Provision of information about cognitive deficits associated with MS 2. Neuropsychological assessment 3. Evaluation of patient's characteristics of cognitive decline 4. Determination of and feedback on individual cognitive strengths and weaknesses 5. Counseling to optimally use one's cognitive abilities (individually/in group) 6. Teaching to use compensatory strategies and aids (individually/in group) 7. Adaptation training groups for patients 8. Adaptation training groups for family members To conclude, our own experiences as well as the feedback received from the patients and their spouses encourage us to consider cognitive rehabilitation courses as one possible way of rehabilitating cognitive problems. It is not our intention, however, to underestimate the importance of individual neuropsychological rehabilitation and personal retraining. On the contrary, we suggest that the intervention steps described in Table 5 could be followed to alleviate the effects of cognitive impairments in MS. References 1. Fischer J, La Rocca NG, Sorensen P. Cognition. In: Kalb RC, ed. Multiple Sclerosis. The Questions You Have The Answers You Need. New York, NY: Demos Vermande; 1996:149 171. 2. Jennekens-Schinkel A, La Boyrie PM, Lanser JBK, Van Der Velde EA. Cognition in patients with multiple sclerosis after four years. J Neurol Sci. 1990;99:229 247. 3. Amato MP, Ponziani G, Pracucci G, Bracco L, Siracusa G, Amaducci L. Cognitive impairment in early-onset multiple sclerosis. Pattern, predictors, and impact on everyday life in 4-year follow-up. Arch Neurol. 1995;52:168 172. 4. Kujala P, Portin R, Ruutiainen J. The progress of cognitive decline in multiple sclerosis: A controlled 3-year follow-up. Brain. 1997;120:289 297. 5. Jonsson A, Korfitzen EM, Heltberg A, Ravnborg MH, Byskov-Ottosen E. Effects of neuropsychological treatment in patients with multiple sclerosis. Acta Neurol Scand. 1993;88:394 400.

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