Myrtle (not her real name) was an 80-year-old retired nurse. Prior to her stroke, Myrtle was an active lady who socialised regularly and used public transport independently. Myrtle described herself as always having been "a worrier". She also saw herself as a very independent lady who did not like to rely on others for help. Myrtle suffered a left middle cerebral artery infarct a year prior to the psychology referral. An MRI scan showed that the infarct involved the insular regions and the left temporal lobe, sparing the corpus striatum structures. The MRI scan also showed an old infarct in the right parietal region.
At the time of the stroke, Myrtle presented with right-sided weakness including right-sided facial weakness, dysphagia and no speech. She was admitted to hospital and thrombolysed. Sixteen days post-stroke, Myrtle was transferred to a rehabilitation ward. By this time, Myrtle had little residual physical disability and her main difficultly was dysphasia. She remained on the stroke rehabilitation ward, where she received physiotherapy, occupational therapy, speech and language therapy and medical care, for one month.
Myrtle did not appear to have long-term cognitive difficulties following the stroke: the Lowenstein Occupational Therapy Cognitive Assessment completed by occupational therapists during her time on the rehabilitation ward demonstrated intact orientation, perception of objects and self, praxis and memory.
Myrtle was seen by a speech and language therapist (SALT) at acute and rehabilitation hospitals and subsequently as an outpatient. She received input for expressive dysphasia, which was described as "mild" by the time she was discharged from hospital. The SALT intervention focused on adopting a total communication approach (communicating in any way possible, including writing, drawing, gesturing, etc.) and reducing anxiety about her speech. After six sessions of outpatient SALT, Myrtle was referred to the psychology service for further work on anxiety about her speech.
At the time of the psychology referral, Myrtle had episodes of speech that were appropriate and intelligible, but at other times displayed disorganised language, reduced volume and "jargonistic" output. The SALT felt that this variability was directly related to anxiety and confidence. During a SALT session 11 months post-stroke, Myrtle rated her confidence as 1 out of 10 and reported avoiding situations that she used to enjoy, for example talking to friends and going to town.
Initial psychological assessment identified significant levels of anxiety. She reported worry about a stroke happening again, about finding it hard to communicate with others and about being a burden to family and friends. She scored 14 out of 20 on the Geriatric Anxiety Inventory (GAI), which is well above the cut off of 9 or more. Myrtle reported often feeling tearful and having a reduced appetite. She did not, however, report any difficulties with sleeping, nor did she report suicidal ideation. Her score on the Brief Assessment Schedule for Depression Cards (BASDEC) was below the cutoff (7 or more), indicating that Myrtle's main difficulties were principally related to anxiety. She believed that these difficulties had been triggered by the stroke and the resulting speech difficulties that this had left her with. Myrtle's goals of therapy were to: "Have more contact with family and friends," "Visit sisters who lived between 30 and 60 miles away, using public transport independently," "Visit family in her country of origin," "Spend less time sitting on her own thinking about the things she worried about," and "Return to hobbies she had previously enjoyed but currently avoided".
Myrtle appeared to be experiencing a high level of anxiety, including worry that she would have another stroke and that she was a burden to friends and family. She was also finding it hard and embarrassing to communicate with others and worrying on this account. The anxiety had resulted in Myrtle avoiding activities that she previously enjoyed, such as meeting friends, going bowling and going into town. The avoidance of these activities appeared to maintain her feelings of anxiety. Additionally, avoiding social activities resulted in a decrease in social contact, something which she had thoroughly enjoyed before her stroke and which was contributing to feelings of low mood and tearfulness. Due to her difficulties with communication, Myrtle relied more upon her family to help her with day-to-day activities. This decrease in control over her own life led to feelings of frustration and served to further maintain her high levels of anxiety.
Myrtle avoided talking to family members when she felt worried or upset, as in these emotional states she found it harder to speak coherently. This meant that at any time when she started to feel upset or worried, she would go upstairs and spend time on her own. This seemed to result in Myrtle's children worrying more about their mother. Myrtle's reluctance to discuss her anxieties with her family was also likely influenced by her independent nature and her reluctance to be "a burden" or to rely on others for help. Spending time on her own also resulted in increased time thinking about the possibility of having another stroke and what that might mean for her independence, thereby maintaining her difficulties.
There is currently no anxiety measure validated for use with older people after stroke. Given Myrtle's age and cognitive and communication difficulties it was considered inappropriate to administer the HADS-A which requires a choice of four response levels against a descriptive statement. Instead the GAI was used. This scale requires simpler Yes/No responses to statements. The GAI has been specifically developed for use with older people and research has shown it is reliable and valid in older people with another neurological condition, Parkinson's disease. The standard cut off (a score of 9 or more) was used to consider the presence of significant anxiety symptoms.
To confirm the presence/absence of significant depressive symptoms, the BASDEC was used. The BASDEC was developed specifically for use with older people and has demonstrated good reliability and validity at its recommended cut off (7 or more) in sample with older people who have had a stroke.
In addition to the standardised measures, one of Myrtle's major presenting concerns, the belief she would have another stroke that would render her completely unable to communicate, was also rated over the course of the intervention using a scale of 0 to 10 ("0" meaning believing this would definitely not happen, "10" meaning believing that this would certainly happen).
Following the assessment session, eight sessions were held over an approximate four month period, followed by a one- and three-month follow up session. Sessions were 50-60 minutes in duration and administered by a trainee clinical psychologist, supervised by a consultant clinical psychologist as described under Participant 1.
Initial components of intervention included psycho-education about anxiety and the basis for cognitive-behavioural intervention. Following this, the focus was on relaxation training. This involved teaching breathing for relaxation and an autogenic relaxation exercise, the script for which was recorded on a CD for Myrtle to take away and use at home.
Work then moved towards developing a hierarchy of situations that Myrtle was avoiding and working her way through confronting these situations. This was modified to accommodate Myrtle's difficulties with reading and writing. Hierarchies were not formally written down but noted by the therapist and discussed and updated in sessions. This style also served to maintain a collaborative therapeutic relationship and to avoid the therapist appearing didactic. Throughout the intervention, the therapist was careful to allow Myrtle to take the lead in sessions due to the lack of control that she found frustrating in other areas of her life. Cognitive disputation was undertaken while working through the hierarchy. Negative predictions associated with certain activities were challenged. For example, Myrtle avoided going to meet friends for coffee because she was concerned that she would have difficulty speaking and that this would result in her becoming extremely embarrassed and her friends becoming either impatient or pitying towards her. Once she had tested this out by going to meet friends, the evidence for these thoughts was revisited and updated. Myrtle was then able to identify strategies to use when she found it hard to speak clearly, for example taking a deep breath or asking for a moment to think.
The cognitive component of the work also involved disputing some of the beliefs that were contributing towards Myrtle's anxiety. One belief that was causing her a significant amount of distress was that she would definitely have another stroke and that this would render her completely unable to speak. This part of the intervention included psycho-education about stroke recurrence, the wide range of effects strokes can have, and risk factors for stroke. The risk of Myrtle having another stroke was real and acknowledged. However, discussions highlighted those things that Myrtle was already doing to minimise this risk (for example, not drinking alcohol, taking more exercise and using relaxation exercises and prescribed medication to lower blood pressure). The costs and benefits of worrying about something that she only had limited control over were also discussed. In order to support communication, discussions were summarised more frequently than might have been the case for a patient without deficits in this area. Additionally, discussions were revisited across sessions and important points summarised at the end of the session by the therapist when appropriate. Cognitive disputes were also kept as concrete as practical in light of Myrtle's communication problems, and behavioural components of the intervention emphasised. The therapist also wrote things down and slowed the pace of conversations to assist Myrtle's understanding.
The sixth session was used as a review session. At this point Myrtle had made progress towards her goals, including re-commencing a hobby, visiting family more frequently, using public transport to meet friends independently and finding that her speech was less frequently "muddled".
Following the review, sessions focused on relapse prevention. This involved revisiting what Myrtle felt she had learnt over the course of therapy and what strategies she had used that would be helpful in future. These included continuing to practise relaxation and maintaining her current level of social activity. It was acknowledged that setbacks might occur, following which future challenges were identified and strategies to deal with these challenges were discussed. The cognitive-behavioural model was revisited, with specific focus on avoidance and its role in maintaining anxiety. Two follow-up sessions were held after one and then three months.
Figure 2 summarises the changes on the GAI, and the belief rating over the course of the intervention and at the two subsequent follow-up sessions. The positive change in scores was maintained over the course of therapy and at both follow up sessions. Myrtle's rating of her belief about having another stroke remained at 5 out of 10 from the review session onwards. When this was discussed, she explained that she was happy with this rating as she felt that it was "realistic" and reflected the real risk of stroke recurrence. Further, she felt that the anxiety associated with this belief had reduced significantly.
Other indicators of change included Myrtle's reports that she felt more confident going out on her own and more confident in her ability to communicate with other people and feeling "more like herself again". She had also achieved many of her original therapy goals. Myrtle had re-engaged with previously enjoyed activities and more regularly met with friends. She made independent trips to see family members, including booking a holiday to see family in her country of origin who lived some distance away. Myrtle also reported that she felt she spent much less time "worrying about things" and was getting better at "taking each day as it comes". Two follow-up sessions were held after one and then three months. Myrtle was offered a six month follow up session but declined the offer as she reported that she did not feel that another session was needed.