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Performing Alzheimer's disease

1999; Elsevier BV; Volume: 354; Linguagem: Inglês

10.1016/s0140-6736(99)90260-x

1474-547X

Suzanne Poirier,

Science, Research, and Medicine

Suzanne Poirier, PhD, is professor of literature and medical education at the University of Illinois College of Medicine, Chicago, USA. Her teaching includes courses in literature to medical students in their clinical years, and she supervises students' production of Body Electric, a poetry journal that is published annually. Her published books are Writing AIDS: Gay Language, Literature, and Analysis, coedited with Timothy F Murphy (Columbia University Press, 1993), and Chicago's War on Syphilis, 1937-1940: The Times, the Trib, and the Clap Doctor (University of Illinois Press, 1995). She is editor of the journal Literature and Medicine and, with Lioness Ayres, has recently completed a book manuscript on stories of family caregiving. "Don't you think we're being a bit … presumptuous?" My student leaned into the front seat of the mini-van, and silence fell on the chatter from the back. "What do you mean, presumptuous?" I countered, my thoughts focused on the slow-moving, late-afternoon traffic on Milwaukee Avenue. "Telling these people what it's like to have Alzheimer's. Most of us have never even seen it, and here these people live with it. I mean, who are we to tell them what it's like?" I shifted my attention–from the traffic light that I wanted to stay green for at least three more car lengths to the dozen students in the van. "Well, if we've got it wrong, they will be the first to tell us. And even that will be important to know." Learning from one's mistakes, however, especially in front of a group of strangers, obviously isn't very comforting, so I continued, "But I think you'll strike some familiar chords. Remember, the stories were written by people who took care of family members with dementia. And I haven't met a group yet that hasn't been fascinated just by the idea of medical students caring enough to become actors for them. It'll be just fine". And it was. But I get ahead of my story. This conversation took place on a winter evening in Chicago, as a group of about 12 medical students were on their way to give a dramatic performance at a monthly family support meeting at the Chicago Alzheimer's Family Day Care Center. In this undertaking, my students joined a growing number of medical students across the USA who have explored the experiences of illness through productions of readers' theatre. Readers' theatre, as I learned from an earlier mentor to tell both students and audience, is "theatre of the mind", in which the audience is asked to envision appearances, movements, and the passage of time with almost no visual cues. In readers' theatre, actors read from a hand-held script, usually sit in a grouping of chairs, and wear neutral clothes with an occasional accessory such as a hat or jacket. It is a convenient format for busy students, who have very little rehearsal time and usually even less stage experience. It is a convenient format for producers, who usually transport productions to local libraries, hospitals, or community centres. And it is a convenient format for sponsors of the production, who usually do not have the space or equipment for a fully staged play. Finally, the scripts that have been adapted for these performances are short (about 30 minutes), accommodating again the limited time and resources of all participants. At this point, I would be hard pressed to identify any one person who originated the use of readers' theatre in medical settings, but performances go back at least to the early 1980s, in medical schools as far flung as Michigan State University, East Carolina University, the University of North Carolina, Rush University in Chicago, and the University of Illinois at Chicago. Among the plays that have been performed are adaptations of Eudora Welty's "A Visit of Charity", William Carlos Williams' "Old Doc Rivers" and "The Use of Force", Arthur Conan Doyle's "The Doctors of Hoyland", and Richard Selzer's "Imelda". Casts have included medical students, students from other health professions, clinical and non-clinical faculty, and professional actors–in various combinations. Performances have been given in courthouses of small rural communities, auditoriums on university campuses, dining halls at meetings of state medical societies, medical school classrooms, workshops at professional conferences, and community spaces in health-care facilities. Scripts are usually adapted from existing literature, usually (but not always) by a professional experienced in such work, but sometimes original material is created for a particular venue. For the remainder of this paper, I will use the content of one particular production–Alzheimer's on Stage, the performance of which was being anticipated in the conversation that opens this article–and my experience in producing it in two different settings to explore both how literature can be used to teach medical students about the personal effects of Alzheimer's disease on families and how performance of literature facilitates and enhances learning. Alzheimer's on Stage is a series of three short autobiographical stories, selected to provide various family situations in which Alzheimer's disease may occur. The three stories also follow a loose chronology of the course of the disease. The first scene, adapted from Myrna Doernberg's book Stolen Mind: The Slow Disappearance of Ray Doernberg,1Doernberg M Stolen mind: the slow disappearance of Ray Doernberg. Algonquin Books, Chapel Hill, NC1986Google Scholar depicts the events that forced Myrna and her husband, Ray, to finally admit that "something was dreadfully wrong".2Poirier S. Stolen mind. Unpublished readers' theatre script.Google Scholar Ray's dementia is actually caused by Binswanger's disease, and he is only in his early 40s when the disease strikes. But the gradual deterioration of his cognitive and affective capacities captures many families' inability to recognise–often followed by their efforts to deny–that a loved one's mind is losing its acuity or attachment to the world. "When did things change?", Myrna wonders. "What were the signs? Less initiative perhaps, some loss of interest. It was around the time Ray turned forty, maybe five or six years earlier. Mid-life crisis–big deal. We both thought it was temporary, a response to life changes. We were happy. Life was good."2Poirier S. Stolen mind. Unpublished readers' theatre script.Google Scholar She realises only in retrospect and after Ray's boss, who has made numerous allowances for the sake of their long friendship, finally dismisses him as not being interested in work and reassigns his work to a junior of the firm. Ray is bewildered; Myrna is terrified. The second vignette is an adaptation from another book-length biography, Living with Alzheimer's: Ruth's Story by her husband, Art Danforth.3Danforth A Living with Alzheimer's: Ruth's story. Howarth Press-Prestige Press, Falls Church, VA1986Google Scholar In this scene, Ruth is out all night after failing to pick Art up for dinner and a play. Ruth has been diagnosed with Alzheimer's disease for some time at this point, and she had been out all night once the previous summer during their vacation in rural Pennsylvania. But Art had watched her carefully and had adopted a number of strategies to keep her as independent as possible. It was an agonising night: "There was nothing more I could do. I went to bed with my door open, the front door light on, and one ear and one eye open. The refrigerator went on; I got out of bed to check the noise. A board creaked as the house cooled down; I got up again. It was like that all night. Finally I got up at 7:30, ate a breakfast of sorts, and did a couple of small chores to keep my mind off what I now felt sure must have happened: some terrible accident."4Poirier S. Ruth's story. Unpublished readers' theatre script.Google Scholar Ruth walks in the door, nonplussed by Art's concern, and Art is forced to admit to himself that Ruth's disease has progressed to a stage where her independence must be curtailed even more. He is alone, though, in realising the ominousness of his decision. "Where's the Baby?", by Anne Hudson Jones, is an adaptation of an autobiographical sketch that originally appeared, under the same title, in Academic Medicine.5Jones AH Where's the baby?.Acad Med. 1992; 67: 24-25Crossref Scopus (1) Google Scholar In it, the author is taking her grandmother to a doctor's appointment. Anne is running late because she got lost on her way to an unfamiliar hospital. Her grandmother needs to see this new doctor for a new development, unrelated to her Alzheimer's disease: constant back pain. She sometimes forgets she has this pain, though, and is thus perplexed about the nature of this trip. She is more concerned by a question that echoes throughout most of her days: "Where's the baby?" Who this baby is, Anne observes, remains a mystery: "We can't figure out who the baby is that worries her so. My cousin thinks it's me. My grandmother took care of me when I was a baby while my mother went to college. I think it's my cousin's mother, who is my grandmother's youngest child. We'll never know. Nor does it matter, except that we don't know how to allay our grandmother's constant anxiety about its well-being. I keep hoping for a time clue, hoping that if we could get the decade right, we could provide a more satisfactory response."6Poirier S, Jones AH. Where's the baby? Unpublished readers' theatre script.Google Scholar Most of Gran's spoken lines repeat this question (panel), until, that is, a new, also urgent concern captures her attention: "I have to pee".6Poirier S, Jones AH. Where's the baby? Unpublished readers' theatre script.Google Scholar Anne's emotions shift rapidly among compassion, anxiety, tolerance, impatience, guilt, and frustration as she eventually finds her way to the hospital only to have to wait until nearly the end of the day to see a physician. In this scene, Alzheimer's disease has totally claimed Gran's mind, to the extent that she is unaware of her condition, a double loss that makes her totally dependent on a granddaughter who feels her own loss as well as her grandmother's.PanelFamily history (figure)"Where's the baby?" I hear her ask again as I turn back to the forms that want to know birth dates, death dates, illnesses, and causes of death for relatives I never knew. My grandmother had four sisters and three brothers, all dead now. Not the youngest, she has outlived them all. To the best of my knowledge, her mother, one sister, and one brother all lived long enough to develop the same kind of dementia, presumably Alzheimer's, that is slowly destroying her mind. And I've been told that her mother–my great-grandmother–was also obsessed with concern for a baby in her last years. My mind wanders, and I puzzle over this strange hereditary link. Could the Alzheimer's gene be associated with a caring gene, I wonder? I pull myself back and struggle on with the forms.From Anne Hudson Jones, "Where's the Baby?" Acad Med 1992; 67: 24-25. Copyright © 1992 Anne Hudson Jones. Reprinted with permission. "Where's the baby?" I hear her ask again as I turn back to the forms that want to know birth dates, death dates, illnesses, and causes of death for relatives I never knew. My grandmother had four sisters and three brothers, all dead now. Not the youngest, she has outlived them all. To the best of my knowledge, her mother, one sister, and one brother all lived long enough to develop the same kind of dementia, presumably Alzheimer's, that is slowly destroying her mind. And I've been told that her mother–my great-grandmother–was also obsessed with concern for a baby in her last years. My mind wanders, and I puzzle over this strange hereditary link. Could the Alzheimer's gene be associated with a caring gene, I wonder? I pull myself back and struggle on with the forms. From Anne Hudson Jones, "Where's the Baby?" Acad Med 1992; 67: 24-25. Copyright © 1992 Anne Hudson Jones. Reprinted with permission. In creating and producing this script, I was guided by my desire to use readers' theatre as a teaching tool for students as much as for the audiences. Whether students sign on to the project for course credit or volunteer for it as an extracurricular activity, I meld didactic with production goals. Preparation requires three sessions of about 2 hours each. Performances follow shortly after the preparation. The first session serves as the audition. Students are briefly informed about the content of the scripts and plan of the project, and then they read the script aloud, a speech at a time, around the table. We pause after each vignette to discuss the aspects of dementia depicted there, when it occurs in the course of the people's lives, and how it affects each family. Students are introduced to various family settings and experiences of Alzheimer's disease, while I note their voice quality, reading facility, and vocal and facial expressiveness. (I am not demanding or expecting professional performances here, nor am I expecting brilliant or exacting casting from myself. But I can, fairly quickly, discern which students demonstrate an innate facility in reading clearly and with some expression.) Within 24 hours of the audition, I assign the parts and ask students to read through their roles a few times before our next meeting. The second session is a rehearsal. Students are seated at one end of the classroom in chairs clustered as described in the script. They read through the script once, with frequent interruptions. I offer practical advice about speaking slowly enough to be clear, yet with enough variation in speed to reflect changes in emotion. I cast most questions, however, in terms of what actors think their characters are feeling. In dramatic terms, the discussion turns around motivation, and I encourage the entire class to consider the range of emotions possible in each situation. This exercise not only draws students into the emotional responses that Alzheimer's disease evokes in all family members but also develops the characterisation of each role. Actors make their final decisions on the basis of the evidence about the character offered in the story itself as well as their own, often intuitive, reaction to the words they are speaking. After each vignette is read through in this deliberate way, we go through them again, without stopping. Already there is an apparent improvement in the clarity and dramatic force of the scenes. Most students practise this new characterisation before the third session, the dress rehearsal. For this session, I secure the help (paid, though sometimes with just a token fee) of a professional dramatist, someone who will appreciate the limitations of students but who can offer concrete, basic suggestions to improve their delivery, their interaction with each other, and their movement on and off stage. A few small directions make an immediate, noticeable improvement and give the students a new burst of confidence and enthusiasm. This, then, is where we rejoin my students, suddenly grown anxious in the back of the mini-van. Although, in the USA at least, medical students are nothing if not self-assured, even the most confident of them succumbs to stage fright about this time. But, somehow, they always rise to the occasion. Bravado gets them on stage, but soon into the performance there are subtle responses from the audience: movement forward in their seats; a quiet groan of sympathy; a chuckle. The drama of the lives these students read from their scripts is only too familiar to most of the people in the audience. The conversation that follows, often lasting twice as long as the 30-minute performance, is even more dramatic. "The first two … I don't know", one person says, "but that last one", and the audience begins trading stories of the best public restrooms around town (cemeteries and McDonald's are the favourites). An elderly woman's account of her decision to take her husband into the women's restroom brings tears to most of my students' eyes, although the woman herself is chuckling at her own audacity and proud of her independence. "Well, the first one reminded me", another man returns to "Stolen Mind", and people share tales of bizarre behaviours whose only explanation, finally, was the one they most dreaded to hear. "You got it exactly right", exclaims a man whose mother spends one day a week in an adult day centre. "Do you know someone with Alzheimer's?" Students are drawn back in, since the audience is always curious about how students come to understand the characters they portray and why they undertook such a project in the first place. When prompted to give advice to these future physicians, the audience responds with lessons these students will never learn from textbooks. "My mom's doctor is wonderful", says one man. "He always talks directly to her and treats her as a capable human being". The students nod, but another person speaks up: "Well, that's not always so good. I wish my uncle's doctor would give me more information; he always acts like I'm not in the room, but I'm the one who has to make the decisions". Another woman praises her grandmother's physician for always taking her (the granddaughter) into a room alone, checking her own health, and offering sympathy for any frustration she is feeling; but another woman reports that her aunt is always on her best behaviour for the doctor, who always says, "Oh, but she's doing great", despite the niece's protest to the contrary. Another family brought the husband's mother with them, and students heard the husband, who is on the list for an organ transplant, say repeatedly that taking care of his mother for the past 9 months is the best thing that has happened to him. His wife, meanwhile, remains silent except for one observation about how their grown sons seldom come around anymore because they can't deal with their grandmother's inability to recognise them. The stories that the students perform come alive before their eyes as they witness the emotions they discussed and chose to act borne out in the lives of the people now before them. People linger to chat long after the last applause has died. Performing these stories of Alzheimer's disease involves the students from the moment they encounter the script. The content of the stories themselves raises issues about the changes that this disease makes in all aspects of families' lives. The creation of believable characters, through speaking their words, engages students in voicing these people's fears and love, sharing the same emotions in the process of recreating them. And eliciting other people's stories through this performance makes almost palpable the rich lives that patients will bring into these future physicians' offices. I owe my training in readers' theatre to my experience with faculty in the Department of Humanities at East Carolina University Medical School in Greenville, North Carolina, where I had the invaluable opportunity to be a part of a readers' theatre programme that had been in place for more than 5 years.