Topics in Stroke Rehabilitation ISSN: 1074-9357 (Print) 1945-5119 (Online) Journal homepage: http://www.tandfonline.com/loi/ytsr20 Social Communication in Older Age: Lessons from People with Aphasia Bronwyn Davidson, Linda Worrall & Louise Hickson To cite this article: Bronwyn Davidson, Linda Worrall & Louise Hickson (2006) Social Communication in Older Age: Lessons from People with Aphasia, Topics in Stroke Rehabilitation, 13:1, 1-13 To link to this article: http://dx.doi.org/10.1310/0GGQ-CJDX-N2BR-W7W4 Published online: 02 Feb 2015. Submit your article to this journal Article views: 11 View related articles Citing articles: 8 View citing articles Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ytsr20 Download by: [Washington University in St Louis] Date: 18 March 2016, At: 17:18 Social Communication in Older Age: Lessons from People with Aphasia Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 Bronwyn Davidson, Linda Worrall, and Louise Hickson Lessons on social communication in older age are drawn from the stories and qualitative case reports of three older people who have aphasia following stroke. Descriptive accounts of participant responses to qualitative interviews and stimulated recall of natural conversations, together with information from a social network diary, provide evidence of aspects of social communication relevant to the older person with aphasia. The perspectives of individuals and common themes relating to social communication with family and friends, the experience of aphasia, and living with aphasia in older age are presented. The prominence of conversations and the role of storytelling and of humor within the daily social communication of older people are illuminated. Key words: aphasia, older people, social communication A n understanding of social communication in older age is achieved through the accounts of three older Australians who have aphasia following a stroke. These case studies provide an example of the dynamic of daily communication for older people in the context of their personal and social relationships. Indeed, there is a long tradition in clinical research of the lessons learned from the in-depth study of individuals.1 This article describes three stories, one of a man and two of women who in later life are living with chronic aphasia. An explanation of the impact of aphasia on their social communication was sought through multiple data sources: biographical information, social network diary entries,2 qualitative interviewing,3–5 and stimulated recall, also called video-mediated recall.6,7 The focus of each story is the person’s experience of aphasia within his or her social life. Qualitative methodologies were used to explore the lived experiences of aphasic communication and to enhance the understanding of the essence of daily communication and the nature of conversations with family and friends. Indeed, these case studies were a part of a larger research study that investigated the impact of aphasia on the everyday communication of older people. 8 Findings from the qualitative case studies contributed to an understanding of social communication from the “insider perspective.” As described by Parr, 9 one of the strengths of qualitative interviewing is that it enables conceptual analysis and abstraction of the data, yet the actual words spoken can be retained. Also, it is congruent with a commitment to learning about life with aphasia that the voice of the participant be heard. Thus, direct quotations have been included in reporting these stories and observations. Understandably, the quotations are in “aphasic language.” For purposes of analysis, conversational turns within interviews are identified. For example, A1/13 identifies M.T. as participant A, 1 as the first qualitative interview, and 13 as the numbered conversation turn. A descriptive summary of each person’s story as revealed through qualitative case study methodol- Bronwyn Davidson, is a Lecturer in Speech Pathology and a member of the Communication Disability in Ageing Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. Linda Worrall, is Professor, Communication Disability in Ageing Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. Louise Hickson, is Associate Professor, Communication Disability in Ageing Research Centre, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. Top Stroke Rehabil 2006;13(1):1–13 © 2006 Thomas Land Publishers, Inc. www.thomasland.com 1 Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 2 TOPICS IN STROKE REHABILITATION/WINTER 2006 ogy is provided. Each summary includes information from the person’s communication diary, their participation in a qualitative interview regarding their experience of aphasia, and their observations after viewing videotaped natural conversations with two of their regular communication partners. Findings from these three case studies allow us to explore common threads regarding the insider perspective on the impact of aphasia on social interaction and relationships in later life. Initials different from those of the participants have been used. Personal names in transcripts have also been changed. This article presents each case and then discusses key themes that emerge regarding the impact of aphasia on social relationships and communication in older age. Implications for societal interventions that are responsive to the authentic social communication experiences of older people are raised. The First Story – Introducing Female M.T. M.T. was a woman who displayed a concern for other people, an engaging manner, and a contagious laugh. She was 84 years at the time the case study data were collected. M.T., who lived at a retirement village with her terminally ill husband, was keenly interested in her garden and church activities and in being friendly to her neighbors. Her stroke occurred 7 years previously, and she had a residual moderate fluent aphasia. M.T. had a bilateral sensorineural hearing loss and had successfully managed with binaural hearing aids for 40 years. As a result of the stroke, she had residual mild sensation loss and mild motor changes affecting her right side, but she reported that she managed cooking, light housework activities, and hobbies (sewing, knitting and gardening) with care. Writing was accomplished slowly with her right hand. She sought assistance from others in completing forms, writing cards, and in checking her spelling and grammar. M.T. had met and married her second husband of 4 years in the midst of her rehabilitation program. Before her stroke, she lived alone in a large suburban family home and was actively involved in community and church activities. She enjoyed hand crafts, completing crosswords, and letter writing. At the time of her stroke, she had been widowed for 10 years, kept in touch with family and friends, and led an independent and active social life. M.T.’s Social Network of Aphasia Profile An understanding of M.T.’s regular social contacts was sought through the completion of the Social Network of Aphasia Profile,2 which asks the person with aphasia (with the assistance of others, as required) to keep a brief daily record of their social communication over the period of a week. Despite a significant acquired dysgraphia, M.T. devised strategies and sought assistance to enable her to complete the brief diary of her social communication for 7 days, recording the people with whom she interacted, where the interactions occurred, and why. The diary recorded that M.T.’s daily activities revolved around her home: care of her sick husband; visits from community workers (3 days per week); going to the local shops, her hairdresser, and a church service; brief exchanges with neighbors and other residents of the retirement village; and conversations with family members and a friend who was a regular visitor. Over the 7-day period, approximately 5 hours were spent outside of her home. The purpose of the social contacts was described in her diary as “shopping,” “helping,” “friendly conversation,” “conversation over tea,” “talking about care of Alan (husband),” “holiday news,” “changing appointment,” “discussing Christmas,” “social chat,” “gardening-chat,” “saying farewell,” “unpacking shopping,” and “family visit.” Insights from a qualitative interview with M.T. The interview took place at a dining table in M.T.’s home and lasted approximately 1.5 hours. It is of note that M.T. recounted particular experiences by narrating what happened, including quoting words used in previous conversations. For example, in response to the question “Can you think back to the time just before your stroke?”, M.T. replied: And I think it was about half past eight or somewhere round about there, here, she… she came in. And so I said, “Would you like a cup of tea, Nancy?” [Nancy is M.T.’s daughter.] “Oh that will be great, thanks Mum.” So we came into the kitch… the kitchen and we put it into the um….Yeah but I can’t tell you the word again …into the joh the ….Yes and I had a cup but I didn’t seem to know what it for. And so …after a little while… Nancy said that Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 Social Communication in Older Age there was something wrong, you know. So, she said “Mum, I think you better lie down for a while,” and I said, “Perhaps I’d better do that.” And, but what she was really doing was to saying hello to Janet. [M.T.’s other daughter] “Has Mum been doing silly things there?” “Oh no,” she said “nothing like that” [laughter] and because they had a wedding the week before, you know…and so after this um…Nancy said… Um. You know, No, there was nothing for Janet to say, you know, So he went/she went hello to the ambulance and he said it was not very well long that he was here and had a look…. I was lying down, you know, and he said, “Come on, quickly,” and then the they took me back into the ambulance and by that time I was away… away somewhere, and that from then I couldn’t tell you. That was… although I think when I got in there, I think I must of a couple of times, there sort of part of bit of there but…. Other than that for the next three years/three weeks, I mean, [brief laugh]…ah…I couldn’t tell you what, what was all it about .…You know. The detail given in this story and the verbal reenactment of the event was typical of M.T.’s responses. Interpretive reading of the data from this interview identified a number of key issues. These are illustrated as follows. First, that life is different after a stroke: Well as I say, the um the grammar is gone and I couldn’t tell you ….I would like to say to me to someone “Oh, thank you very much for such a lovely doing such a things,” you know…I can’t do that now...because I can’t give you the whole sort of thing, you see. (A1/80) …so that it’s very different from where, from where it was before, you know. There’s no doubt about that…because there are a lot of things that I will never ever be different. I will be, not the same as that. (A1/74) Second, M.T. described factors that affected social interaction, including the experience that some communication partners are more effective than others: She [her friend, Joyce] was much better about it than um…Roy. (A1/96) But Roy was, he had got no idea. And this is the whole thing, you see, because the people, unless you have it, you don’t know. And ah…all I can just do, is try and give them what happened and that sort of thing. (A1/90) I think the whole trouble is…she doesn’t know what to say….(A1/468) M.T. also expressed concern that there is misperception of a person’s competence: …and of course, the whole thing that is very bad for people to say that it looks a bit…ah…a bit funny [gestures to her head]. (A1/114) 3 M.T. told an elaborate story about purchasing a new refrigerator and her response to the community worker who insisted on double checking measurements: “You know,” I said, “I’m not stupid.” I said, “I can’t have the word sometimes but I’m still just the same up here” [gestures to head]. (A1/118) Another factor for M.T. was the importance of humor: [M.T. describes how she uses humor and laughter to diffuse communication breakdown.] M.T.: But I always make sure it is funny, you know. Interviewer: You make it a little humorous. M.T.: If, if people you think “oo, oo dear, you know, how she can’t do it,” you know, I would…. That would be terrible, you know, but then if I do this and say it’s funny, you know, well they are happy then. That’s what I do about it anyway. (A1/166-168) I don’t feel that it is any worry that um … and then if you can’t… well, then you do like I do down at the church, you know, have a bit of fun. (A1/194) M.T. drew attention to factors that actually support social communication. She said that having extra time is important: Sometimes I can’t exactly what the way the word and she’d say to me “Now don’t worry,” she said “just wait” you know, and she’s always lovely to do that, you know. (A1/ 170) But it takes a while because I have to say and make sure I’ve got the right things, you know. (A1/ 261) She also described the importance of being able to seek assistance and being able to use collaborative problem solving. [M.T. was describing asking for assistance with letter writing] So perhaps if Tami could come back home, she would say for me Alan’s not very well and we hope things will be much better for us or something and …. She will give me that and then I can put that at myself like as though it’s me. (A1/214) M.T. stressed the importance of keeping in touch with friends: I would just do that at Christmas or some special time, you know…to say how are you doing and so forth and now I can’t do that because we have to wait for Janet or for Tami or for Lyn down at the bottom here. [M.T. seeks help from others in writing cards/letters.] (A1/265) I always go down there and I always say “Hello” to whoever, you know, and I say, a couple of special ones that I 4 TOPICS IN STROKE REHABILITATION/WINTER 2006 knew were not really too well and I’d say “How are you doing today?” (A1/324) Yes, I just say “How are you, Jane?” you know, and we have a chuckle. (A1/ 435) Also M.T. describes frustration at not being able to make contact with friends on the phone: Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 I’m sorry that I can’t able to say hello to people that I would like to see. And um I’d love to say how…how are they doing there because they’ve got quite a few children…aw….They’re big now but I’d say have they got babies now and so forth, you know. But I can’t…. (A1/439) When asked about aphasia related to aging, M.T. indicated that she saw the concept of aging as being relative to people’s overall health and physical ailments rather than chronological age. She also described changes in her ability to recall people’s names and told a story illustrating problems with her husband’s memory. At a number of times during the interview, M.T. made reference to her mortality and physical limitations. When distilling key themes from M.T.’s interview, three aspects stood out: • M.T.’s use of personal stories to illustrate her point; • The emphasis M.T. placed on humor and being able to view aphasic language as “funny”; • The importance M.T. attributed to maintaining social contacts and to expressing social affiliation (e.g., enquiring about neighbors’ health, saying farewell, greeting friends at Christmas and on their birthdays, expressing empathy) and her appreciation of others who initiate social contact, greetings, and assistance. M.T.’s stimulated recall interview M.T. was videotaped on 2 days interacting with regular communication partners. The first video was with Len, a community care worker who assisted M.T. and her husband three times per week. The second was with a friend, Peter, who also lived at the retirement village and who visited M.T. and her husband at least once each week. M.T.’s husband was present during Peter’s visit and participated minimally in the conversation. On viewing the playback of the videotapes, M.T. spontaneously compared the two episodes, including the style of communication of the two men, Len and Peter. Her comments then also extended to other communication partners, neighbors, and other health care workers. For example, she commented that Len appeared nervous initially, and that the video clip with Peter was more natural and a more typical interchange. M.T. readily tuned in to nonverbal aspects of the communication (e.g., her own use of gesture, and Peter leaning forward when engaging in conversation). In response to the video replay, M.T. made observations regarding her communication difficulties, both word-finding difficulties and her hearing impairment. After viewing the video, M.T. gave the following description of aphasia: But it’s just the words that I’m, I couldn’t get back on, you know. It’s funny how…you can’t get to that word, you know. (A2/214) She discussed factors that affect the social interaction, including the need for additional time to respond You see it wasn’t too bad really in in a way and um and he seemed to know what I was talking about, you know. Yes, only that I have to wait for a minute to get it. (A2/63) Yes, yes. Sometimes this is a lot of trouble, you see, they can’t, they can’t worry because um to have to wait for a while, you know and you can’t do that. A lot of people they won’t have that sort of thing. Yes. So that I think that they need to have to wait and this is very special, I think, for people to be doing this sort of thing. (A2/67) I think he’s a bit better, yes. I think he still has to sort of um wait for a while. (A2/81) and the behavior of others: Ah. It all depends what, what is the person…if they, if they will try to stay with the word with you….Others will say, “oh, don’t worry about it.” And that goes me off. I don’t like that, you know. (A2/186) M.T. suggested that people have limited knowledge of aphasia: This is something that a lot of people do not know that and I think it’s very trying to get to people, you know. I don’t know how you do, but um but how you can. (A2/77) When responding to the videotaped communication, M.T. reiterated issues that she had discussed in the in-depth interview. Her cognitive competence was one of two prominent issues: Social Communication in Older Age I mightn’t be, mightn’t have it, get it all the names but I know I’m OK. Believe me….But you…so this is what I said to him. You see I’m not silly, you know. (A2/73) Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 The second prominent issue that M.T. reiterated was her ability to view aphasic language breakdown through humor. M.T. described, by means of words, gestures, and facial expressions, how others get tense and angry and use “horrible names” but that she does not react that way. Yes, but I never seemed to worry about doing that….It seemed to be always funny [laughter]. (A2/103) That’s what I used to say with Alan [husband], you know, I said “Well, there’s one thing about it, we’ve got funny. It’s always funny, you know….” (A2/121) Reflection and summary of social communication for M.T. Exploration of M.T.’s perceptions in relation to the videotaped conversations provided valuable insights regarding M.T.’s social interactions, but it also prompted her thoughts and comments about other conversations and relationships. As in the interview, M.T. talked of effective and satisfying communication in terms of collaboration between herself and her communication partner; of the other person understanding what she was talking about and giving her time to express herself; and of the importance of humor. The Second Story – Male J.B. J.B. was a polite, reserved, yet sociable man, with a keen interest in current affairs and in reading history. The stroke had left him with a right hemiparesis, his arm and hand being affected most markedly; but he walked independently. He had residual anomic aphasia and was mild-moderately nonfluent when discussing issues in depth or expressing abstract ideas. He was 69 years old at the time these data were collected. Prior to his stroke, 9 years previously, J.B. worked on yachts and lived alone in another major city. He described the experience of having a stroke as “terrible, yeah, awful. Still, it’s life.” Following hospitalization and early rehabilitation, J.B. moved to another city to live with a couple who were long-standing friends. He had a strong commitment to improving his communication 5 abilities and his involvement in groups that promote increased community awareness of aphasia and learning from each other. J.B. had a strong interest in sports, especially golf and sailing, and was a regular visitor at the golf club near his home. J.B.’s Social Network of Aphasia Profile J.B. completed his own brief, structured 7-day diary of his social communication by printing with his left hand. The diary recorded daily greetings and conversations with the friends with whom he lives; conversations with staff, friends, and acquaintances at the golf club that he visited on 5 of the 7 days; greetings and brief conversations with people in his neighborhood (including staff at the local school); a luncheon outing with a friend; and two visits to shops including taking a taxi. In the diary, J.B. described the purpose of the social contacts as: “plans for the day,” “conversation,” “good morning and goodnight,” “chat have coffee,” “shopping,” “purchased an old painting,” “bought a new TV,” “met a few friends,” “had lunch,” “Good aye, How are you? Well, I hope.” The diary records indicated that during that week, J.B. spent around 27 hours in social activities away from home. Qualitative interview with J.B. The interview was conducted at J.B.’s home and took approximately 1 hour. The interview took place with J.B. and the interviewer (and two dogs) in the kitchen. J.B. demonstrated an interest in exploring the topic of the impact of aphasia on social communication, yet he had marked difficulty explaining details. J.B. focused on talking about his current activities and friends. For example, the interviewer probed the question of whether some people were easier to have conversations with than others. J.B.: Ah, I, I reckon I can. Mark is a…. He’s a reporter…a reporter. He works for, for 6BC [a local radio station]. Interviewer: He’s a presenter. J.B.: Announcer yes, yes. He’s a jolly well founded fellow he knows what my stroke has been like. Interviewer: Yes. J.B.: Yeah. 6 TOPICS IN STROKE REHABILITATION/WINTER 2006 Interviewer: So does it make a difference if people know what your stroke has been like? [The interviewer asked if aphasia affected getting on with people.] J.B.: Yes, yes. I used to run into…. And ah, up at the golf course every day. And ah…. Suddenly he has been cut back two hours of work and he doesn’t get there until twelve o’clock. And I’m on my way back then. [Pause] Um, it does…yeah… um. It might be harder but manageable. Yeah. It’s not right but they tend to give it away. (B1/68) Interviewer: You don’t see him so often. Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 J.B.: Yeah, I saw him this morning and um… made announcement the… um… he’s going down; he’s going to Manly. They cut you off. Not everyone, but some do. (B1/74) The got aphasia, people, pushed to one side. (B1/359) He described factors that support social communication, including rapport and empathy: Interviewer: Uh huh. He’s understanding. (B1/130) J.B.: Oh, oh, I said that’s good. And he decided, I’ll pick you up one day next week. I go on 20th December. I said, well, if it’s a Wednesday give me time to…. I’ve got a card, the CYC card and I’m allowed in there and we’ll have lunch. We have lots of interest, driving, going down to...[coffee]. (B1/267) Interviewer: Mmm. J.B.: With Jan, who’s a friend … um …. So we’ll be 21st or 22nd I’ve not looked at dates yet. Interviewer: He’s a good person to talk with, to converse with. J.B.: Yes, yes. He’s…he’s a good person. And… he writes the papers; the Courier Mail, and the Australian. And he takes the time. He takes the time um…[pause] the time he takes…. (B1/104-116) The above interchange was typical of the way J.B. described his current social communication, providing details of his present activities and friendships and acquaintances. J.B. became engaged in the interview, stating, “I never speak with Jill [his house companion] like I’m speaking to you.” Interpretive reading of the interview data identified the following key issues. J.B. also described how life is different after a stroke: I had great plans for before my stroke [pause] and it’s all gone now. (B1/100) My friend has a stroke and he, he walks perfect… he’s got perfect arms legs but he gets very angry. (B1/172) [When talking about another friend who had a stroke] She’s not lost that power of driving. Yeah… she’s good at it. (B1/263) J.B.’s descriptions of aphasia serve to remind us that life with aphasia is complex: It is famous, ah… infamous thing…aphasia. It’s complex, very complex [long pause]. (B1/351) He also noted factors that affect social interaction, including the responses of communication partners: He’s a jolly well founded fellow. He knows what my stroke has been like. (B1/106) J.B. discussed the impact of aphasia on specific communication activities: I never tell jokes. (B1/81) Stories, no you don’t….Stories, jokes will come anathema. (B1/85) The detail about the stories. It’s er….It’s difficult. I read quite a lot and .… Stories…um…I find that...with stories….The won’t the…the detail as much as the story I’m reading. (B1/95) When asked about communication with different communication partners, J.B. described: Before my stroke, I talk to shop keeper, trades people. It’s easy. But aphasia…it’s difficult. (B1/138) I think ah…if they were strangers, they don’t know what aphasia is and um they can tell you, you can tell them you’ve got aphasia. (B1/144) On the other hand, when describing attendance at a community aphasia group, J.B. said: Fun, it’s fun. And I meet friends, made lots of friends through that. (B1/339) In discussion of older age, J.B. spoke of people in their eighties. He was 69 years at the time the case data were collected and described his main social activities as being with people younger than himself. When asked about the effect of aphasia in older age, J.B. explained: Twenty years old, you’ve got forty, fifty years life left in you; but um… sixty years old you’ve got um twenty years….(B1/168) When distilling key themes from J.B.’s interview, three aspects stand out: Social Communication in Older Age • His current regular social outings and contacts with people in his community and with others with aphasia were important; • Aphasia is very complex; • Telling the detail of stories was difficult for him. 7 I’m … with Jill…I don’t spend the time talking…. Jill was not as much interested, um interested in my…conversation with Jill. (B2/119) J.B. also described that the conversation with Mark was typical of their relationship: Researcher: With Mark you seem to give opinions. Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 J.B.’s stimulated recall interview Two segments of everyday communication were videotaped. The first took place at the local golf club and involved a conversation over coffee and the daily newspaper with his friend, Mark, who J.B. met on a regular basis. The second video segment was of communication with Jill, the friend whom J.B. described as friend/family in his diary. The video segment with Jill was of a conversation around a table at their home. On viewing the video segments, J.B. became animated and spontaneously offered comparisons on the two interchanges. J.B. described the first video interchange as, “I think it’s marvellous,” and “um… two of us together, yeah, is enjoyable.” J.B.’s delight regarding the conversation at the golf club extended to his talking about other positive social occasions both with Mark and with other friends. A prominent aspect of J.B.’s response to the video of his interactions with Mark at the golf club was his sheer enjoyment of the occasion: He’s so...no, no…enjoyable and meeting Mark um…is enjoyable and he knows so much. (B2/22) The scenery is enjoyable. The people at the golf club are all nice. (B2/18) There is evidence of social engagement and shared interests: I had my coffee…there. And he had his coffee, latte, and I bought him one and bought him another one and that’s how it went. (B2/38) A good friend, yeah, yeah…I’ve known him for about seven years. Oh, he reads the paper, the Courier mail and the Australian and I have talks with him and um….I’ve met another person, Dave. He was with Mark…. And we chat about other things. (B2/50) When commenting on the conversation with Jill, J.B. described some lack of symmetry in the communication: I don’t think I was equal with Jill. (B2/61) J.B.: Yeah…ah…much more opinions with Mark um when, than with Jill. But I speak to him a lot. Researcher: To…? J.B.: To Mark.… I speak to Jill when she comes home, and before work and I don’t have connections with Jill at work. Researcher: So you’d have more lengthy conversations…. J.B.: With Mark, yeah. (B2/91-96) After viewing the beginning of the videotape with Jill, J.B. made the observation: He’s more in…connect with…Mark and me… and she’s more out of the focus, yeah. (B2/113) The video recall activity provided a focus for J.B.’s comments about the impact of aphasia within a particular interchange: There is a time when much I’m, I’m going to skay…say…is um…I can’t get it out. (B2/102) It slackens off a bit. (B2/131) More silences, yeah…because I went from there, I suddenly…couldn’t answer anything. (B2/139) The stimulated recall process proved a medium for stimulating discussion on broader aspects of the impact of aphasia. For example: J.B.: You can’t tell the story as much, as jokingly as possible… yeah….it’s a terrible thing. Researcher: Is it? J.B.: Terrible, yeah, awful. Still, it’s life. Researcher: Mm. (B2/181-184) J.B. indicated that meaningful interactions occurred when he was able to share about his life and his interests, especially his life interest in sailing. Reflection and summary of social communication for J.B. Exploration of everyday conversations with different communication partners facilitated J.B.’s description of the nature of his social conversations. Expressions of enjoyment and satisfaction were 8 TOPICS IN STROKE REHABILITATION/WINTER 2006 associated with a conversation in which he felt connected with the other person and shared conversation on topics of mutual interest. Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 The Third Story – Female D.K. D.K. was a determined, frustrated, organized, and assertive woman. For example, she communicated a definite interest in participating in the research, at the same time she questioned her ability to contribute since she could not talk. She worked through the details on the information sheet with interest and demonstrated her desire to be involved in decision making about the video scenarios at each stage in the research process. D.K. was 80 years old at the time the case study data were collected. As the result of a stroke 9 years previously, D.K. had severe aphasia and associated apraxia of speech, together with a dense right hemiplegia. Her expressive communication was essentially nonverbal. D.K. required significant assistance in making transfers from her bed to wheelchair, for bathing and toileting, and getting in and out of the car. She lived with her elderly husband, Jack. Since the stroke, D.K. could not manage the stairs, so she lived in a converted ground floor area of their two-story home. Her husband used the rooms upstairs. They reported very limited contact with other family and, in the main, they managed on their own. D.K. was a retired school teacher who maintained a keen interest in world affairs, and especially life in England, her country of birth. Prior to the stroke, D.K. was actively involved in leadership roles in her church and in educational courses for retired people. She had several hobbies including needlework, bobbing lace, and dressmaking. D.K.’s Social Network of Aphasia Profile Because D.K. had severe dysgraphia, D.K.’s husband, Jack, wrote the diary entries recording D.K.’s social communication over a 7-day period. Jack was her main communication partner, and he indicated that he provided communication support in other situations. Since D.K. and Jack were in the process of selling their home and buying a new place, the diary recorded several meetings with a real estate agent and a solicitor. On one day, D.K. had contact with a group of people at church and the church warden. There was also a single contact with a hairdresser at a respite center, one visit with her doctor, and a visit from a community worker and their son. Contact with neighbors was recorded on 2 days. The purpose of the contacts, detailed in the diary by her husband, were signing documents, monthly medical, open day (new home), shopping, buying furniture, discussing new home, and, in relation to the son, travelling overseas. The diary recorded approximately 19.25 hours spent outside of her home. Qualitative interview with D.K. The interview took place around a table in D.K.’s home. A total communication approach was adopted. D.K. and the researcher had blank paper and pens, a page illustrating a variety of emotions, a calendar, and the interview guide presented in an “aphasia accessible” form. 10,11 Pages of clip art and key words provided scaffolding for the interview. D.K was encouraged to write or draw and use artefacts in her home to enhance her message and convey her meaning. The interview was videotaped. D.K.’s communication was essentially nonverbal. Her communication took the form of varied delivery of “oo, oo, oo” in terms of volume, intonation, and rate; meaningful facial expressions, smiles, frowns, looks of concern; head shaking and nodding; laughter and crying; as well as gestures including rudimentary pantomime. These included counting on her fingers, pointing with her left hand, large gestures using her left arm and hand, showing objects, papers from her notice board, and occasional attempts at drawing or writing numbers or letters. D.K.’s husband, Jack, was working around the house and garage during the 1-hour interview period. Although it had been explained that the interview was between D.K. and the researcher, Jack did come in for sections of the interview. On occasions when Jack interrupted or attempted to contribute to the interview, D.K. indicated that he should leave. It was evident that D.K. enjoyed participating in supported conversation about her life and interests prior to her stroke. Her animated responses con- Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 Social Communication in Older Age veyed her engagement in the interview, and she readily expressed her enjoyment in recalling her interest in reading, tennis, and weaving. She showed the interviewer examples of her needlework and other artefacts and persevered with mime and attempts at drawing until the interviewer understood that she used to do dressmaking and tailoring. D.K. explained she was president of a women’s group and a representative at regional and statewide church meetings. Some key issues to emerge from the “supported” interview related to D.K.’s response to having aphasia. When asked to describe how it was to have aphasia, D.K. started to cry. She also used the illustration, on the page of pictures showing different emotions, to indicate “frustration.” She emphasized that this was her experience of having aphasia. She extended this response about how it was to have aphasia to express that she was worried about her husband. The interview explored the impact of aphasia on relationships with particular people. D.K. indicated limited contact with children and responded positively regarding her relationships with women friends at church and craft groups. She used a church notice to indicate the names of friends who were members of her parish group. In responding to questions about social contacts with shopkeepers and tradespeople, D.K. communicated her dependence on Jack. She expressed both good and bad experiences with doctors; disappointment with her pastor; and extreme frustration concerning her inability to be more involved in financial arrangements. D.K. indicated an ability to greet strangers and noted that her contact with neighbors was limited to greetings. During discussion about her participation in communication activities, D.K. indicated that she cannot share stories or undertake business transactions. When asked about expressing comfort, she was thoughtful, communicating she could convey concern but do little else. D.K. produced hearty laughter when she conveyed that conversations tend to be one sided. She noted that if Jack was out she answered the phone and could let Jack know if their son or particular friends called. Laughter accompanied her pantomime of the telephone interchange, which consisted of lifting the receiver, expressive vocalizations, listening, and 9 hanging up. D.K. looked forlorn when asked about pets, indicating that they had previously had animals and she would like a dog (definitely not a cat!). When asked about participation in group discussions, D.K. conveyed the message that she listened and communicated interest in what was being said. In seeking D.K.’s response about communication partners, the interviewer used visual cues to suggest some people are good and some are poor communication partners. When she was asked what makes a good communication partner, D.K. gestured to her mouth and then pointed to and fro movements with her hand. She gave definite affirmation when the interviewer sought to verify that this meant that a good communicator sought her opinion and made sure it was a two-way interchange. When asked what poor communicators do, D.K. shook her head and gestured “cut you off” (sliced hand movement) and demonstrated no engagement (hand pushing away). The interviewer probed “What makes you happy?” D.K. indicated her craft work and pointed to a partly completed jigsaw puzzle and playing cards and cribbage on a table in her room. When asked about aphasia in older age, D.K. gestured that an old person was near the end of his or her life. She again expressed concern about her elderly husband, indicating “worried” and “sad” on the cue sheet showing feelings. When distilling key themes from D.K.’s interview, three aspects stand out: • Her deep frustration and sadness associated with being aphasic; • Her eagerness to share stories about her life, her current interests, and opinions; • Her commitment to maintaining hobbies and social contacts. D.K.’s stimulated recall interview D.K. was videotaped in two regular communicative situations. The first was at the needlework group that she attended each week. The video segment showed periods of communication with Lyn, the woman who coordinated the craft group and offered assistance to group members with their needlework projects. D.K. was working with Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 10 TOPICS IN STROKE REHABILITATION/WINTER 2006 her left hand on a piece of tapestry. The video included interaction with Lyn’s puppy (a guide dog puppy) that was present on the day. The second video segment showed time with Jack at home over a cup of tea, including a segment of them looking at family photographs. Again, a total communication approach was taken in seeking D.K.’s responses to the conversations that took place in the two videotaped scenarios. First, there was D.K.’s reaction to observing these social interchanges. Second, the researcher sought to understand D.K.’s rating of satisfaction/ enjoyment of the videotaped social communication and D.K.’s evaluation of that particular conversation partner in terms of whether the person was a “good” or “bad” communication partner. D.K. displayed an intense interest in viewing the video segments and in recalling the communication that took place. At various times, she smiled or looked concerned, interested, or agitated. In seeking D.K.’s feedback on the specific communication interactions, the researcher included simple ratings, written choices, and questioning to assist in verification of responses. Two visual scales were used; the first was a ten face, unhappy to happy scale, for rating enjoyment of the interaction, and the second was a simple visual analogue rating scale with endpoints “thumbs down/bad” to “thumbs up/good” for rating the communication partner. Through her deliberate choice of a face on the unhappy (1) to happy (10) scale, D.K. recorded her level of enjoyment of the social communication recorded on the video. This process proved feedback that was specific yet qualitative. D.K.’s ratings regarding enjoyment of the communication were 7 (Lyn) and 9 (Jack). Also, after viewing the first video of interactions at needlework, D.K. was asked to rate Lyn as a communicator partner on the 10-cm visual analogue “bad/good communicator” scale. It is of note that D.K. indicated a point measured at 6.75 on the 10-cm scale after viewing communication with Lyn. This was contrasted with a rating of 8.25 for Jack following her viewing of the everyday communication at home. Nevertheless, D.K. used gestures to suggest a degree of frustration in communicating with Jack. With the aid of written choices, D.K. indicated that communication about her tapestry, in the first scenario, was the most satisfying segment of the videotaped communication. In her conversation with Jack, D.K. noted that the communication over the photos was more satisfying than talk about their new house. The researcher used written cues to elicit discussion of those factors that assist communication with another person. Written choices included “gesture,” “writing,” “items from notice board,” “laughter-humor,” and “photos.” D.K. circled all with her hand. When asked “Any more than others?”, she clearly indicated “laughter-humor.” D.K. went on to pantomime a group of people talking and being unable to contribute. Her clenched fist and teary eyes indicated the degree of frustration she experiences. The researcher’s field notes recorded that on the day of the video recall D.K. appeared tired and concerned about events beyond the research activities. Reflection and summary of social communication for D.K. A supported conversation with D.K. allowed her to evaluate and compare aspects of her usual social communication. D.K. rated communication associated with meaningful activities as most enjoyable. However, the frustration she experienced was palpable. She identified humor as an important component of satisfying communication. The researcher’s journal recorded that the use of rating scales and visual cues provided structure and scaffolding for D.K.’s participation in discussions. Common Threads in the Accounts Key themes relating to social communication emerged from categorization of the indexed data of the three cases. In addition to the themes discussed in the individual case studies, thematic analysis revealed categories that were grouped under interpersonal communication, including the concept of connectedness between people. Other themes were the value placed on maintaining friendships, sharing stories, and the role of humor in social interactions. The value of friendship All three older people placed an emphasis on the maintenance and development of positive Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 Social Communication in Older Age friendships. However, social network diaries have recorded fewer friends for older people with aphasia compared with healthy older people.12 The consequences of a reduced social network are likely to be isolation and loneliness and additional reliance on family members and community workers. Studies on quality of life point to a positive link between social activities, the presence of supportive friends, and ratings of an older person’s quality of life. 13–15 Thus, the development of meaningful social relationships becomes a desired goal of therapy. Friendships are desired not only for the aid and security they afford but also because they provide opportunities for purely enjoyable interaction such as the pleasure of sharing leisure activities, trading life stories and humorous anecdotes, and engaging in playful, spontaneous exchanges. The role of storytelling Useful links exist in the study of social communication between storytelling and the use of humor in the expression of interpersonal relationships. Storytelling is common in casual conversations and provides a resource for confirming social affiliations and sharing experiences. Also, humor can be used to make it possible for conversation partners to do serious work while being able to distance themselves from it.16 Thus, a case is presented for therapy with older people with aphasia that has a focus on the development of satisfying conversations by enabling the use of storytelling and promoting the use of kindly humor in the sharing of issues of importance to those adjusting to life with aphasia. 17 Davidson, Worrall, and Hickson12 established that conversations were the most frequent communication activities engaged in by older people. Thus, the relevance of therapy that underpins storytelling by older people with aphasia and promotes satisfying conversations with a range of communication partners cannot be overestimated. Clinical Implications These case studies place the understanding of aphasia within the social fabric of a person’s life. Lessons learned may serve to challenge us to con- 11 sider if continued medicalization of aphasia is counterproductive for responding to the priorities of older people. A social model approach provides a means for thinking creatively about how a person may live successfully with aphasia in older age.18–20 Changes in practice may begin while the person is in hospital, with a focus on social communication rather than illness. Instead of commencing an interview with the question “How long is it since you had the stroke?”, clinicians may ask, “Who do you talk with each day?”, or friends may be encouraged to ask, “Are you interested in gardening? I look forward to showing you my garden when you get out of hospital.” Also, older people with aphasia have expressed their desire to be involved in decisions that relate to their health care as well as family, home, and business matters. Thus, there is the imperative for families and health professionals to be educated in practices that enable shared decision making and collaborative problem solving. In discussing the impact of stroke on individuals, on family systems, and within extended social systems, Lubinski21 suggests that the communication life of the person with aphasia is enhanced when clinicians go beyond words to the function of communication and from function to context. In reflecting on lessons learned, I (the first author) was drawn to my notes on the use of metaphor in qualitative researching. Indeed, one of the rich experiences of qualitative interviewing is that it teaches the researcher and clinician to listen to and to be perceptive of the metaphors and stories told by participants. Richardson22 speaks of metaphor as the backbone of social science writing, since the essence of metaphor is experiencing and understanding one thing in terms of another. Tuning in to the images and metaphors used by older people provided insights into their world and their construction of life events. 23 Reflection on the lessons I learned from the qualitative interviews of these older people with aphasia led me to develop images (metaphors) of the impact of aphasia that were real for them. For J.B., with his extensive experience of sailing, life was a voyage that included the storms of experiencing a stroke and the changed conditions of communication with aphasia. When I asked D.K. if there was anything else that she wanted to tell me, she wheeled herself to her tapestry. The piece she worked on was Downloaded by [Washington University in St Louis] at 17:18 18 March 2016 12 TOPICS IN STROKE REHABILITATION/WINTER 2006 of the Tower Bridge in London. This artwork seemed to me to tell her story, bridging her nonverbal world of severe aphasia, her communication with women friends at her embroidery group, and her origins in England and continuing love of that country – all part of life’s rich tapestry. Finally, reflection on recurrent themes in M.T.’s interviews brought into focus her ability to view changes associated with her paraphasic language as humorous. Frequent references to interpreting life experiences as funny and her statement, “I did always have a bit of fun with things, you know,” prompted me to consider M.T.’s adaptation to life with aphasia as “something funny happened on the way through life….” Checking these metaphors/images with case study participants proved a valuable way to verify my interpretation of their stories and experiences. Conclusion These case studies of older people with aphasia record our attempt to reflect the emic perspective in research that investigated the impact of aphasia on the social communication of older people. As described by Wallace,24 life stories allow researchers to study how people ascribe meaning and communicate about life experiences within the framework of the present. The cases illustrate that life with aphasia is different, that personal and relational factors have an impact on daily interactions, and that telling one’s story is an integral part of social communication. Ultimately, we are reminded that relevant lessons regarding social communication in older age are to be learned from listening to people who live life with aphasia. REFERENCES 1. Helm-Estabrooks N, Holland AL. The power of one: every aphasia treatment case is a case study. In: Helm-Estabrooks N, Holland AL, eds. Approaches to the Treatment of Aphasia. San Diego: Singular Publishing Group; 1998:1–9. 2. Code C. 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