Article
‘Brightness in dark places’: Theatre as an arena for communicating life with dementia
Dementia 2014, Vol. 13(5) 598–612 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213480157 dem.sagepub.com
Eva Gjengedal Molde University College and University of Bergen, Norway
Else Lykkeslet Molde University College, Norway
Jan I. Sørbø Volda University College, Norway
Wigdis Helene Sæther Sør-Trøndelag University College, Norway
Abstract The aim of this study was to use artistic expressions on a theatrical stage for communicating life with dementia, as portrayed in literary texts and to explore whether such communication would help relatives of people suffering from dementia gain knowledge of their situation. Life with dementia was portrayed through four theatre performances with actors reading excerpts from literary texts combined with music. Relatives were invited to the performances and to participate in focus groups following the events. Analysis revealed that the participants recognized episodes in the texts and were touched. This resulted in new knowledge. The aesthetic expression was of great significance. The use of the theatre stage as an arena for communicating knowledge became a meaningful experience. The performances enabled identification with roles on the stage, created a feeling of community with the audience and contributed to an experience of dignity. Keywords aesthetics, art, caregiving, dementia, families, focus group interview
Corresponding author: Eva Gjengedal, Molde University College, Molde, Norway. Email: [email protected]
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In which ways may artistic performances focusing on dementia-related issues be experienced by people with heavy care burdens? The project ‘Theatre of Health’ wanted to find answer to this question. The theatre stage was used as an arena for communicating experiences of being close to people with dementia, as expressed in literary texts, and accompanied by music. The number of people suffering from dementia is on the rise all over the Western world. In Norway there are currently some 70,000 people with dementia, and the number is expected to rise to around 130,000 within the next 30–40 years. Worldwide the number is estimated at around 35.6 million in 2010, with an expected doubling every 20 years (Prince & Jackson 2009). In Norway, more than half the people suffering from dementia live at home (Part Plan of Caring Plan, 2015). All over the world, the family plays a key role in the care for people with dementia. An international survey of 27 studies shows that family members of people suffering from dementia spent 7.4 hours a day on average on direct and indirect care chores (Prince & Jackson, 2009; Wimo, Winblad, & Jo¨nsson, 2007). Many family members assume many tasks with various ‘costs’ depending on the patient’s illness trajectory and the family’s resources (Gottlieb & Wolfe, 2002). Research clearly indicates that to assume the care burden in the home for family members suffering from chronic illnesses involves great challenges (Prince & Jackson 2009). For the care person such challenges involve a complexity of health issues of a physical as well as mental character, which in their turn influence the caregiver’s relation to the suffering family member and may result in work-related and financial problems for the caregiver (Gaugler, Kane, & Langlois, 2000; George & Gwyther, 1986).Family members who over time reside with persons suffering from a dementia illness have a more challenging life and are more prone to bad health than families with members suffering from other chronic diseases (Nordtug, 2000; Ulstein, Wyller, & Engedal, 2007; Waite, Bebbington, Skelton-Robinson, & Orell, 2004). Sadness, guilt, anger, and anxiety over time are common emotional expressions (Ulstein et al., 2007; Wogn-Henriksen, 2006). Physical symptoms such as headaches, weakened immune system, and malnutrition are also recorded (Baumgarten et al., 1992; Vitaliano, Zhang, & Scanlan, 2003). One of the greatest challenges for such families may be the process of arriving at the decision to move the family member with dementia into a nursing home. As a result of a general lack of insight into, and understanding of various behavioral symptoms connected with dementia, people suffering from such diseases and their families are also subject to stigmatization (Ferri, Ames, & Prince, 2004). Research shows that the families need more knowledge and improved cooperation with the health services (Mæhlum, 2005). Although the concept of ‘burden’ carries mainly negative connotations, positive dimensions of taking on major care tasks are also reported, such as new insight, wisdom, empowerment (Cohen, Colantonio, & Vernich, 2002; Solem & Ingebretsen, 2002). There are also reports of a development of emotional warmth, openness, sensitivity, and patience, resulting in an increased understanding of others. Some caregivers experience an increase in independence and determination (Ingebretsen, 2002). The rapid increase in the number of people suffering from dementia and the great challenges facing the families and communities indicate that not only are great demands made on families, health personnel, and health systems, but also on the population as a whole. This implies a need for research related to various forms of communications activities. The ability of art to sharpen one’s sensitivity to the theme being communicated is described in various contexts (Bø & Sæther, 2004; Løvlie, 1990). Aesthetic experience is strongly associated with knowledge and insight. Good art yields knowledge and understanding of a particular kind (Johannessen, 2002, 2005). Gadamer (1960, 2010)
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found it essential to reintroduce the concept of truth into art. Art characteristically reveals something true about our existence and about ourselves. Art may thus be a suitable means for discovering reality and one’s own situation. Art may also be a source of help in ‘processing the body’s crisis’, crises such as grief, suffering, or alienation (Sætre, 2005). Aristotle wrote about the Greek tragedies’ potentially healing effect on the audience. Through an emotional commitment to what went on stage one may experience catharsis, and acquire new insight and understanding into complex phenomena (Aristotle, 1984/2004). As a result of this potential for understanding through art, various art forms, such as for instance psycho drama, are used regularly in treatment and in care in general (Gu¨rgens, 2004; Sæbø, 1998). Within dementia care, artistic expressions such as music (Brotons, 2000), pictorial art (Ree Hunderi & Hunderi, 2009), and dance (Høgaas & Skjønberg, 2007) have been shown to have a positive influence on the patients’ quality of life. A Danish project supported by The Social Research Institute used theatre in two open meetings on dementia. The purpose was to encourage families to talk about their situation. The evaluation of the project emphasized that such small happenings help create intimacy and trust (Boesby, 2007). The projects mentioned above notwithstanding, art forms are not much in use in relation to families of people with dementia. The Norwegian health services have made the education of patients and families an explicit priority. The establishment of 62 Learning and Mastery centres illustrates this dedication. The premise behind these centres is the notion that one learns more easily when joined by other families or patients, and user participation and dialogue are central. This approach takes parts of the health information out of the medical rooms and closer to the patients, or into ‘neutral ground’. Behind this is also an assumption that the room itself communicates something, that something is embedded in buildings and the use of buildings, which influence the users on a meta-individual level (Gjengedal, Schøtz, & Blystad, 2008; Østerberg, 1998). Dag Østerberg calls it a slowness in matter. The present research project will add another dimension to this train of thought: the aesthetic dimension. What happens when the information is supplied within a framework, which normally is reserved for art, or when the presentation of a health problem is art? The project ‘Brightness in dark places’ had a double purpose. On the one hand, we wanted to use the theatrical stage as an arena for communicating life with dementia, as portrayed in works of fiction. Texts that express the patient’s ‘world’ will be important in putting one’s own experiences with people with dementia into perspective. As a form of communication this will benefit larger groups of people and will constitute community oriented health work. On the other hand, we wanted to explore whether this form of communication could help families of people suffering from dementia to reflect and gain knowledge of their situation.
Design and method We wanted to invite people to open theatre performances on the theme of dementia. This would give the project significance beyond what was purely research related. The research group established collaboration with the administration of the ‘side stage’ at a regional theatre in north western Norway. Family members of people with dementia were recruited through the local dementia association. Those willing to participate were invited to watch the performances and participate in focus group interviews afterwards. Ten people signed up. In the information letter the participants were encouraged to note down any
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reflections they made during and after the performance. These reflection notes and an interview guide became important points of departure for the group conversations. The project was reported to Norwegian Social Sciences’ Data Services. Life with a dementia illness was portrayed through four theme performances with professional actors reading excerpts from works of fiction. We made a selection of texts from a variety of genres: novels, essays, and poems. The themes of the texts related to situations of suffering from dementia and being close to someone with dementia. In the first performance a professional actor read excerpts from the novel Melancholia II by the Norwegian author Fosse (1999). In this novel we meet Oline who has become old and forgetful. The plot is simple: Olina has gone down to the harbor and bought fish and she is taking the fish home to cook it for dinner. On her way home she is asked to come and see her brother Sivert, who is on his death bed. Oline, however, is busy getting home and postpones the visit. Gradually she forgets that Sivert is dying. Another sister-in-law visits her, Oline goes down to the harbor again, and then to Sivert, who is now dead. She returns home and the reader gets the impression that this will be the last day of Oline’s life too. Through scattered memories and associations from her childhood and younger days we take part in the poignant story of an old woman who experiences the gradual deterioration of body and mind. The readings were accompanied by musical performances with saxophone and key-board. The second performance staged a documentary essay: The light from my father’s face (Sørbø, 2010). The author read from his book, which is about the loss of ageing parents. He uses the story of his father’s last days as a point of departure for reflections on death and grief and describes how philosophy, poetry, and music gain significance in his own grief work. He describes how he was touched by Brahms ‘Vier ernste Gesa¨nge’, depicting a grief process, and Brahms’ songs accompanied the performance. The third performance presented the book The Path into the Mist (Ree Hunderi & Hunderi, 2010). This book includes poems and paintings. Inger Anne Hunderi was a devoted amateur painter and was struck by Alzheimer’s at 55. She kept on painting way into her dementia and her spouse Ola Hunderi has later written poems to the paintings. He followed his spouse closely during her illness and spent periods living at the nursing home where she spent her last days. During the performance Hunderi spoke of his life with his suffering wife and a selection of poems were read by actors. Ree Hunderi’s paintings were exhibited in the theater’s foyer. The well-known Norwegian jazz musician Karl Seglem has composed music for the book that he played during the performance. In the final performance the actors read from a collection of poems, The other gaze (Klyve, 2006).Through prose poems Klyve communicates her personal experience with her mother’s dementia. The work is set around the author’s visits to her mother at the nursing home, while in the poems she moves in time between her childhood and the present. The texts provide insight into the illness trajectory and the author’s pain as she witnesses her mother gradually ‘disappearing’. The poems were read by a young professional actress, and the poetry readings were interspersed with folk music performed on Harding fiddle. The performances were produced with an emphasis on unity, text and music were to complement or strengthen each other. The stage was equipped with scenographic elements inspired by the various texts. At the last performance a curtain was used which depicted a little girl skipping rope next to an empty wheel chair; the same motive is found on the front of Klyve’s collection of poems. Small rooms seating a relatively small number of people were used, as the purpose was to create an atmosphere of intimacy. The performances were part of the theatre’s Saturday program, which presents literary texts in the afternoon and are
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open to the public. Close relatives to persons suffering from dementia in different stages received a special invitation to the performances and to participate in the research project. The total number of spectators varied from 30 to 70. Some 2 weeks after each performance a focus group interview was performed with family members who had consented to participate in the study and had been present at the theatre performances. Seven of the ten people who initially signed up, participated in all the four interviews. Two withdrew saying it was too hard to leave the person with dementia during the afternoons. One participant withdrew after the first meeting, for unknown reasons. The seven remaining participants did not all participate in all the remaining three interviews. The informants’ relations to the person with dementia were father (of daughter), mother (of daughter), daughter (of mother), male spouse and close friend. One participant only still lived with the person with dementia. Two people with dementia lived in their own apartments; the remaining five lived in nursing homes. Two project group members participated in the interviews as moderator and co-moderator. The following foci were addressed in the interviews, which lasted around 60 minutes: Reflections on the performance itself, recognition of elements from own life, any new insight and/or knowledge, positive/negative experiences with being present at the performances and participating in the focus groups. The purpose of focus groups is to gain insight into topics which the groups’ participants have specific knowledge of; in this case: being close family of a person suffering from dementia. Experience has shown that this is best done in homogenous groups. The idea of focus groups as a research method is to facilitate natural and easy conversation between the participants without much interference from the researcher (Krueger & Casey, 2000). The participants in the present project quickly established a rapport and the conversation flowed easily. The moderator interrupted only when necessary in order to explore a theme further or move the conversation to new topics. In closing the co-moderator summed up the main points of the conversations. The summing up gave the participants a chance to voice any further thoughts or explorations, a chance that was used in a few cases. The participants later stated that participating in the project had been a good experience and that they were happy they had participated. The interviews were recorded digitally and transcribed verbatim by a secretary. The whole project group worked together in the analysis phase, inspired by thematic text analysis as described by Braun and Clarke (2006). The analysis is divided into several steps. The first step is to get acquainted with the interviews through several readings of the material. The data is then organized by coding or dividing the text into meaningful elements. When all data is coded, the next step is to identify themes by grouping related codes. Preliminary themes are then discussed and adjusted till one ends up with some final themes which illuminate the study’s focal points. All four researchers read all transcribed interviews and reflection notes and noted codes, possible themes, and main impressions for each interview and for all interviews as a whole. Preliminary themes were then discussed and adjusted with all researchers present.
Findings In the analysis phase we were particularly struck by how the participants recognized episodes in the literary texts, how the texts touched them emotionally and led to new knowledge/ insight. The aesthetic expression as a whole framed by the theatre stage turned out to be
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of great significance. The themes intertwine and touch each other. We have nevertheless chosen to present them separately, in order to reveal a greater richness of the experiences. The themes will be elaborated in the discussion section.
Recognition: ‘Reflecting one’s own reality’ In daily speech recognition as a concept is usually understood as recognising something or becoming aware of something as familiar. Such an everyday understanding would also cover the meaning our informants reported and which we have thematized under this concept. One of the informants explored the concept for us by saying: ‘One has sort of felt this’. To ‘have felt something’ obviously relates to earlier experiences. What one experiences now is recognized on the basis of something one has experienced earlier and thrust his reflects one’s own reality. To me the image was a reflection of life. My mother as a little girl with her whole life ahead of her – and now . . . There were many tears, but in a good way – I see it as a part of my own process.
This performance set the mother’s life into a historical context and created an emotional presence. The poem became the touching point that created a kind of recognition. Another such touching point was what we have called the ‘cleaning scene’ from the first performance, where Oline’s sister-in-law enters Oline’s house and offers to clean for her. One of the informants related this to her own situation, saying: ‘Yes, there I recognized my own situation. That is probably what she thinks: So now I am no longer good enough?’What the informants recognize here is the suspicion they experience from their families, when wanting to help. The help they offer may be washing the floors as in this example; it may be cooking or doing laundry. And they note that finding the right time and way to give a helping hand is a challenge. One informant said: ‘You must have respect. And that balance is terribly difficult’. To reflect one’s own reality is to get in touch with the good as well as the bad. The informants raised the issue of the significance of helping and the challenges related to this. They are afraid of hurting the ill person’s feelings and say it is easy to overstep boundaries. Several of the performances focused on memory and forgetfulness. These themes seemed familiar to the informants, something they had experienced. One informant used the notion of instant-forgetting to describe how the sufferer is immersed in the olden days, and what happened an hour ago may be already gone from memory. Another informant says: ‘She remembers someone who has been dead for 30 years, but not he who died yesterday’. Such memory loss makes the sufferer need explanations and assistance with remembering events, and may result in a constant barrage of questions about the same things, ‘the same over and over and over again’. The first couple of times this does not constitute a problem, of course, but when you – as one informant said – have answered the same question some 30 times or more, this rather taxes your patience. This is described as a very tiresome and challenging situation – especially for those who live with the person with dementia and care for him or her around the clock.
Touchedness: ‘Finding resonance in one’s own feelings’ The Irish author and Nobel laureate Samuel Beckett is said to have claimed that the theatre’s most important task is to make us laugh and cry. Beckett here expresses a faith in the
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theatre’s ability to touch human beings. There may not have been a whole lot of laughing going on during our performances, but on several occasions there were tears. When the texts resonated with the audiences’ life stories they were touched. One informant said that the performance was like ‘an echo of my own emotions,’ it created joy and sadness both, for what had been and for what was yet to come. Some said that what was presented was a revelation. Some found comfort. Some parts were experienced with a high degree of recognition and this induced a feeling of support; ‘To know that others experience the same things and have put it into words – gives one strength to keep on doing one’s job’. The informants said that being family in these cases was ‘a burden’, and in the performances they found a sort of resonance for their own emotions. They used words like comfort, hope, and melancholia. The music had a soothing effect. One informant said ‘it was a comfort of sorts to me,’ and that some sort of hope was communicated that one will be able to go the whole way. The music strengthens the emotions and helps one tune in to what hurts. ‘Sitting there became part of my own process. My everyday life is troubled and sad and that performance touched me so that it somehow went into those feelings again and touched me very strongly’. According to the informants the performances touched what was heavy and challenging in their daily lives in various ways and with varying relevance. Situations from their lives were actualized and many times this hurt, very much. One informant put it like this: It hurts, but at the same time it is a confirmation that others feel the same way, that you are not alone in a way. Others express this too and this touches you, and you feel a sort of support, so to speak.
Several informants used the term ‘it struck me’ or that something in the performance was striking: ‘It strikes you so poignantly. There is such an authenticity in it, a naked truth, in a way’. That which struck did also release emotional expressions such as tears and ‘a lump’ within. Having words given to one’s experiences was strong: ‘I sat there and again and again I thought yes, this is how it is, it was in fact quite strong so I shed many tears along the way, it struck me so horribly’. When speaking of crying, words like relief, ‘tears poured, but it was such a relief,’ were used. The identification with the characters seemed to release cathartic emotions that they earlier had not been able to express. That it had been a long time since one had cried for one’s own situation as family, and ‘yes, it was such a catharsis of the soul,’ was said.
Knowledge: ‘Accepting experiences in a new way’ Knowledge can be understood as new understanding or new insight. This content may be associated with recognition if a connection between earlier experience and new experience creates a new understanding or knowledge about a phenomenon. A premise for the present study is that this new knowledge or understanding is derived primarily through the senses (aesthetics) as an intuitive knowledge as opposed to the conceptual knowledge of logic. The findings show a connection between the art forms and increased awareness, maybe a new understanding; ‘Going from the music to the memories of what has happened, created an increased awareness – I accepted it all in a new way’. With the performances as a backdrop, the informants discussed their own relations as family and gave examples from their own lives. They said this gave them new ideas and that ‘you don’t find such things in books in a way that gives you new thoughts in the same way’.
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This was said in relation to a woman stating that she, through being part of this study, developed new ways of thinking which were helpful for her when she was with her mother. Not the least of which was a respect for others who lived in various other and maybe more difficult family relations. A central theme in one of the performances was grief and the processing thereof. The group discussed ‘the grief in the performance’ in relation to their own grief. One said: The good thing may be that we gained insight into and got fairly well described grief. I will almost say normal grief as opposed to what we go through when we lose a person bit by bit that is different.
Various points of view were voiced on losing someone ‘bit by bit’ and how this is a different sort of grief from the grief related to the death of a family member. The expectations in relation to the first performances seem to have been that the content should relate to one’s own situation. Several participants reported that the first two performances did not live up to their expectations. The first performance was not about living with dementia in the family, but about having dementia. And the second performance was more about grief than about dementia. The conversation in the focus group first revolved around the thought that this had nothing to do with the participants. The performance were about something else, although in and of themselves a learning experience. One informant who had mostly listened during the first part of the conversation, said, almost apologetically: ‘I just sat and made things become my own’. It seems as if the conversation turned after her statement, more nuances emerged as to how this content could be seen as relating to one’s own situation. An example of this is the conversation that took place in relation to grief, ‘normal’ grief and ‘different’ grief. So what was this one informant able to point to? She put it like this: He talked about his grief in relation to his parents, or his father rather, so I entered into my grief in relation to ‘‘losing’’ my mother to dementia, so I did sort of change some things . . . And one thing I truly thought was lovely was when he talked about being able to look back afterwards and rediscover the father-child relationship which disappears when you become care giver for your own parents. And it was lovely too that he said something about things turning around and things like that . . . So I recognised several things even if it was not about the exact same things. I interpreted it based on what I needed.
What this informant brought out may be considered as a turning point for the group. They gained a new understanding which in its turn expanded their notion of relevance.
The aesthetic expression: ‘A comforting and harmonious whole’ The concept of aesthetics derives from the Greek aesthesis, meaning sensory knowledge. It has two fundamental meanings. One is knowledge derived through the senses, i.e. sensory experience, sensory knowledge. The other is teachings about ‘what is beautiful/beauty’ in art. Beauty fascinates and holds us, whether or not we are able to explain precisely what it is. The two meanings are, however, integrated and mutually dependent on each other. A more or less explicit premise for the present project was that the theatre room in itself stimulate to a stronger emotional commitment. The aesthetic experience will vary, as it did for the informants. The experience of art may be described as something good. Some informants described the performances
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as ‘emotional’. One informant put it like this: ‘It is absolutely enchanting to my ears. I just found it so lovely. And that Oline it was so good, her with her peculiarities. I experienced so many fine images when they started reading’. The group as a whole expressed that music creates atmosphere in various ways, depending on what it is about and how it is performed, but it always evokes feelings. ‘Music is balm to our soul’, one informant said, adding that’ it may hurt, but it may also heal’. The informants also touched upon how the music functioned in the performance as a whole. Among other things they noted that ‘the reading sessions were softened by the musical elements’ and further that ‘with the music a completeness is created in the experience which has a comforting effect’. In some situations the music offered a breathing space, one could lean back and recover. Sometimes, however, the music was experienced as ‘a disturbance’, but most of the informants were of the opinion that the music fit in well, and strengthened the experience. When the performances worked for the informants we encountered statements like ‘It was just spot on, all of it’. This expressed the experience of a fine harmony between the performance of texts and music and the exhibition of images. There was talk about text and music strengthening each other or going well together,’ it was a nice experience, the pictures, the music, and all of it, it all fell together nicely’. The same informant said that there was something recognizable in this. This may indicate that the good experiences release something. That contact, that music, those words, it all did something to you and I thought that music, it can make you feel sad, but it was also a relief. It was such a good feeling . . . like a knot dissolved. So it was really a good feeling.
The room and stage set became part of the total experience, which was also commented on by the informants. They said that the atmosphere in the audience was good and that people were very quiet. One of the informants said this to the participants in the group who had not been present at one of the performances: It was the stage set too, the atmosphere. There was a young girl skipping rope, and there was the wheel chair. And I thought the contrasts, it was so simple but so very thought through – and it was set up so that with heat the stage set moved, so it looked almost like she was skipping . . . It was such a very strong effect, with such small means. You don’t need much in the way of a stage set, but there was the wheel chair and you had to see it.
Discussion If our descriptions of the informants’ experiences are representative, we may initially assume that the performances contributed something new and very important to their understanding that health information as such probably would not have done. The effect of the information in its theatrical form may be seen in relation to two perspectives: the significance of the room or space, and the aesthetic form. Rooms and architecture may be seen from a power perspective. Foucault has analyzed the way older institutions were built around the controlling gaze (Foucault, 1963). There will always, in health institutions, be an asymmetrical power relation between the giver and receiver of care. This not necessarily imply any abuse of power, it is simply an acknowledgement of the fact that the roles are quite different. Information in the health
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services will be marked by the fact that those who have the knowledge are ‘at home’ and are rulers of the space/room when in the hospital or in other health institutions, while the receivers of the information are guests and must find out what it is all about. It is neither possible nor desirable to take this relation of authority out of the health services. The specialists will always know more about illness and health and must make decisions based on professional knowledge. One may nevertheless discuss whether the health institutions to a greater extent revolve around the needs of the professional staff, more than around the needs of the users. This is particularly notable in relation to the highly driven surgical techniques of current medicine. If one compares older and newer hospitals, one will find that older hospitals to a greater extent were built around attributes in our surroundings considered to contribute to the healing of the patient. The parks surrounding some hospitals echo the cloisters and gardens of medieval convents and monasteries. More recent hospitals are constructed around treatment activities, while aesthetic expressions are referred to the waiting rooms, corridors, etc. (Gjengedal et al., 2008; Martinsen, 2008).This makes it tempting to assume that the patient’s experience is perceived as irrelevant and a distraction for the medical treatment. When information and the processing of such information are moved into the theatre and artistic forms of expression are used, the focus changes. It becomes primarily about identification between what happens in the text/on stage and the audience. The power relation between expert and user is not realized in the same way, it may, however, be reflected in the texts or the roles. This is an important distinction. When one goes to the theatre, it is to experience and participate in the existential dilemmas being depicted on stage. The distinction between patient and doctor, between specialist and lay person, disappears. There will of course be a separation between stage and audience, but when the performance is a success an identification is created which in a certain sense abolishes this separation. The small, intimate room is constructed to pull the audience into what is happening on stage, but with a certain distance: the spectators are not these persons, and may reserve themselves and pull back when needed. This critical distance between the performers and the audience allowed the informants to reflect on their own life experiences. Through the exchange between the experience of one’s self and the identification with the characters on stage, there is an interchange between the universal and the particular, and the spectators experience their problems as universal. Herein lies the catharsis effect, a notion also used by one of the informants. The same duality of identification and distance is what is attempted understood in aesthetical theory. Gadamer (1960/2010) uses the first part of Truth and Method to describe the aesthetical object and what goes on in our understanding of it. He turns against the purely empirical model, satisfied as it is with what can be measured, and against an aesthetical understanding which makes the experience of art into pure subjectivity. The work of art has a pretention of truth; in the work of art there lies an ambition to formulate the truth of the matter one describes. In order to catch what is particular about a work of art, Gadamer describes the game. Any game is based on the participants respecting the rules, even though they are fictitious or constructed. The game presupposes that the players take it seriously; one plays as if it is important to win – even if it is just a game. A game where nothing is invested becomes boring and meaningless. In the aesthetical game one is aware that it is about a text or a role which may be more or less made up. When a biographically oriented text is published as a book or made into a performance, it is also made into a role; the question of whether it builds upon biographical material
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becomes secondary to the question of whether this is a role or a story one can identify with or enter into; i.e. whether it is ‘true for me’. The difference between the concept of truth in the natural sciences and in art lies in this, that the first is true objectively, independently of the spectator, while the truth of art is completed through the reinterpretation of the spectator’s or reader’s own life. When the performances were successful in reaching the audience, this is a result of the contents being ‘played’ or ‘acted’ by the audience as well. The audience enters into and identifies with the roles and the stories, and understands their own stories in light of what happens on stage. A notable large part of the group interviews are about the informants’ own stories, which they understood in a new way, or felt were explored, in the performance. This new understanding of their situation may be explored through Gadamer’s understanding of the effect of a work of art. One enters a work of art from one’s own horizon, from one’s own experience, and has a preliminary expectation of what will come. This makes all art experiences unique. But when one truly understands a work of art, one’s expectations are conquered by the text or the work of art, and the preliminary understanding changes. The fusion of the work of art with the individual’s expectations creates a new understanding in each individual case. This represents an opportunity to understand something new and different, something one has not understood before. And when this opening occurs, one understands one’s own life in a new way. Such a process was described by the informants: they say they gained new courage and faith in their ability to ‘keep on going’. In this there are play and truth both. The original biographical truth behind the text (with i.e. Hunderi or Klyve) becomes simply a point of departure for a more universal truth about what it is all about: The experience of illness in close family. The performance of the text opens up to other experiences, and these experiences affect the truth of the work. This truth becomes universal, but in such a way that the truth of the work of art is fulfilled in a new way every time a new person understands it. ‘Any encounter with the language of art is an encounter with an unfinished event and is itself part of this event’ (Gadamer, 2010, p. 99). Herein lies possibly the strongest potential for the use of the theatre in relation to life challenges like the ones described in this project. The challenges are made universal, and through this, they are imbued with dignity. The whole aesthetical institution, with its competence regarding texts, theatre, music, and direction, makes what is originally a painful and maybe shameful reality into something universally human. In all its pain this harbors human qualities of love, expressed as rays of light. ‘It may make you feel sad, but it was also a relief’. This is what the informants described happened when the performances hit spot on, and they were truly touched. And herein lies the potential of taking this kind of problem into the aesthetic field.
Reflections on methods In retrospect one may ask whether it was the theatre performances or the discussion in the focus groups that created new knowledge. There is no doubt that the performances themselves started a process of heightened awareness in the participants. We saw this already in the reflection notes. But on several occasions it became evident that the discussion in the groups enabled a furthering of such awareness. The groups seemed to provide a safe space for the informants work on their feelings and to foster a sense of community and support. Our point of view is thus that the results of the focus groups of
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this project support the view that artistic expressions may constitute an important form of communication. But the same results also tell us that if one is to reap the full benefits of this type of health information, it may be useful to include subsequent conversation groups. That will enable the participants to start their individual process and exchange experiences with others in the same situation. A weakness of this study may be that participation varied at the performances and the focus groups; not all seven informants were present during all performances or participated in all group meeting. This was in part compensated for by having four performances and four focus groups with the same participants. Those unable to attend all performances were given access to the original texts performed on stage. Those who for a variety of reasons were unable to participate in all group conversations, but were present at the performances, wrote reflection memos afterwards. Our main impression is that all participants had benefited greatly from participating in the project, including those who did not attend all events. This was affirmed during the final focus group.
Conclusion The study shows that it is meaningful to use the stage of theatre as an arena for communicating with families of individuals with dementia. The power relations are evened out. Although there may exist an asymmetry between the actors on stage and the audience, the audience is given an opportunity to identify with the stage actors’ various roles. The informants’ experiences in their often challenging daily lives enable them to recognise and identify with what they see on stage. When such life experiences are communicated through the texts of others, an understanding develops that these are universal, human challenges. This creates a new experience of dignity and an understanding of the importance of what they are in the middle of. One is not alone in the experience of grief and pain. From the recognition of a painful daily life, comfort, consolation, and new insight spring forth. Funding The authors disclosed receipt of the following financial support for the research: The Regional Research Fund of Mid-Norway and Mid-Norwegian Network for Health and Social Sciences.
Acknowledgement The authors express their gratitude to Rolf Magnus Orø for his valuable cooperation and skillful direction and Linn Kjerland for translation the manuscript into English.
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Author Biographies Eva Gjengedal is Faculty of Health Sciences and Social Care, Molde University College, and is a Professor at Department of Global Public Health and Primary Care, University of Bergen, Norway. She obtained her PhD in nursing science from the University of Bergen in 1994, and is now teaching master and PhD students in health sciences. She has published several book chapters and research articles on patient experiences, health care ethics and methodology. Else Lykkeslet is an Associate Professor at Faculty of Health Sciences and Social Care, Molde University College, Norway. She obtained her PhD in pedagogics from the
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University of Tromsoe in 2003 and is teaching master and PhD students in health sciences. Her research interests are related to different kinds of knowledge and dementia care. Jan I. Sørbø is a Professor at Volda University College, Norway. He obtained his PhD in comparative literature from the University of Bergen in 1998, and is teaching in social studies, primarily in ethics and the philosophy of science. He has published several books, primarily on literary topics. Wigdis Helen Sæther is an Associate professor at Sør-Trøndelag University College, Trondheim, Norway where she teaches at the Master’s Degree Program in Mental Health. In addition she is an adviser at Norwegian Resource Center for Community Mental Health, Norwegian University of Science and Technology, Trondheim. She is trained as an anthropologist and a psychiatric nurse and is doing research in art, aesthetics and culture related to mental health. She has published a book about art, aesthetics and health care.
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‘Brightness in dark places’: Theatre as an arena for communicating life with dementia
Dementia 2014, Vol. 13(5) 598–612 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213480157 dem.sagepub.com
Eva Gjengedal Molde University College and University of Bergen, Norway
Else Lykkeslet Molde University College, Norway
Jan I. Sørbø Volda University College, Norway
Wigdis Helene Sæther Sør-Trøndelag University College, Norway
Abstract The aim of this study was to use artistic expressions on a theatrical stage for communicating life with dementia, as portrayed in literary texts and to explore whether such communication would help relatives of people suffering from dementia gain knowledge of their situation. Life with dementia was portrayed through four theatre performances with actors reading excerpts from literary texts combined with music. Relatives were invited to the performances and to participate in focus groups following the events. Analysis revealed that the participants recognized episodes in the texts and were touched. This resulted in new knowledge. The aesthetic expression was of great significance. The use of the theatre stage as an arena for communicating knowledge became a meaningful experience. The performances enabled identification with roles on the stage, created a feeling of community with the audience and contributed to an experience of dignity. Keywords aesthetics, art, caregiving, dementia, families, focus group interview
Corresponding author: Eva Gjengedal, Molde University College, Molde, Norway. Email: [email protected]
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In which ways may artistic performances focusing on dementia-related issues be experienced by people with heavy care burdens? The project ‘Theatre of Health’ wanted to find answer to this question. The theatre stage was used as an arena for communicating experiences of being close to people with dementia, as expressed in literary texts, and accompanied by music. The number of people suffering from dementia is on the rise all over the Western world. In Norway there are currently some 70,000 people with dementia, and the number is expected to rise to around 130,000 within the next 30–40 years. Worldwide the number is estimated at around 35.6 million in 2010, with an expected doubling every 20 years (Prince & Jackson 2009). In Norway, more than half the people suffering from dementia live at home (Part Plan of Caring Plan, 2015). All over the world, the family plays a key role in the care for people with dementia. An international survey of 27 studies shows that family members of people suffering from dementia spent 7.4 hours a day on average on direct and indirect care chores (Prince & Jackson, 2009; Wimo, Winblad, & Jo¨nsson, 2007). Many family members assume many tasks with various ‘costs’ depending on the patient’s illness trajectory and the family’s resources (Gottlieb & Wolfe, 2002). Research clearly indicates that to assume the care burden in the home for family members suffering from chronic illnesses involves great challenges (Prince & Jackson 2009). For the care person such challenges involve a complexity of health issues of a physical as well as mental character, which in their turn influence the caregiver’s relation to the suffering family member and may result in work-related and financial problems for the caregiver (Gaugler, Kane, & Langlois, 2000; George & Gwyther, 1986).Family members who over time reside with persons suffering from a dementia illness have a more challenging life and are more prone to bad health than families with members suffering from other chronic diseases (Nordtug, 2000; Ulstein, Wyller, & Engedal, 2007; Waite, Bebbington, Skelton-Robinson, & Orell, 2004). Sadness, guilt, anger, and anxiety over time are common emotional expressions (Ulstein et al., 2007; Wogn-Henriksen, 2006). Physical symptoms such as headaches, weakened immune system, and malnutrition are also recorded (Baumgarten et al., 1992; Vitaliano, Zhang, & Scanlan, 2003). One of the greatest challenges for such families may be the process of arriving at the decision to move the family member with dementia into a nursing home. As a result of a general lack of insight into, and understanding of various behavioral symptoms connected with dementia, people suffering from such diseases and their families are also subject to stigmatization (Ferri, Ames, & Prince, 2004). Research shows that the families need more knowledge and improved cooperation with the health services (Mæhlum, 2005). Although the concept of ‘burden’ carries mainly negative connotations, positive dimensions of taking on major care tasks are also reported, such as new insight, wisdom, empowerment (Cohen, Colantonio, & Vernich, 2002; Solem & Ingebretsen, 2002). There are also reports of a development of emotional warmth, openness, sensitivity, and patience, resulting in an increased understanding of others. Some caregivers experience an increase in independence and determination (Ingebretsen, 2002). The rapid increase in the number of people suffering from dementia and the great challenges facing the families and communities indicate that not only are great demands made on families, health personnel, and health systems, but also on the population as a whole. This implies a need for research related to various forms of communications activities. The ability of art to sharpen one’s sensitivity to the theme being communicated is described in various contexts (Bø & Sæther, 2004; Løvlie, 1990). Aesthetic experience is strongly associated with knowledge and insight. Good art yields knowledge and understanding of a particular kind (Johannessen, 2002, 2005). Gadamer (1960, 2010)
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found it essential to reintroduce the concept of truth into art. Art characteristically reveals something true about our existence and about ourselves. Art may thus be a suitable means for discovering reality and one’s own situation. Art may also be a source of help in ‘processing the body’s crisis’, crises such as grief, suffering, or alienation (Sætre, 2005). Aristotle wrote about the Greek tragedies’ potentially healing effect on the audience. Through an emotional commitment to what went on stage one may experience catharsis, and acquire new insight and understanding into complex phenomena (Aristotle, 1984/2004). As a result of this potential for understanding through art, various art forms, such as for instance psycho drama, are used regularly in treatment and in care in general (Gu¨rgens, 2004; Sæbø, 1998). Within dementia care, artistic expressions such as music (Brotons, 2000), pictorial art (Ree Hunderi & Hunderi, 2009), and dance (Høgaas & Skjønberg, 2007) have been shown to have a positive influence on the patients’ quality of life. A Danish project supported by The Social Research Institute used theatre in two open meetings on dementia. The purpose was to encourage families to talk about their situation. The evaluation of the project emphasized that such small happenings help create intimacy and trust (Boesby, 2007). The projects mentioned above notwithstanding, art forms are not much in use in relation to families of people with dementia. The Norwegian health services have made the education of patients and families an explicit priority. The establishment of 62 Learning and Mastery centres illustrates this dedication. The premise behind these centres is the notion that one learns more easily when joined by other families or patients, and user participation and dialogue are central. This approach takes parts of the health information out of the medical rooms and closer to the patients, or into ‘neutral ground’. Behind this is also an assumption that the room itself communicates something, that something is embedded in buildings and the use of buildings, which influence the users on a meta-individual level (Gjengedal, Schøtz, & Blystad, 2008; Østerberg, 1998). Dag Østerberg calls it a slowness in matter. The present research project will add another dimension to this train of thought: the aesthetic dimension. What happens when the information is supplied within a framework, which normally is reserved for art, or when the presentation of a health problem is art? The project ‘Brightness in dark places’ had a double purpose. On the one hand, we wanted to use the theatrical stage as an arena for communicating life with dementia, as portrayed in works of fiction. Texts that express the patient’s ‘world’ will be important in putting one’s own experiences with people with dementia into perspective. As a form of communication this will benefit larger groups of people and will constitute community oriented health work. On the other hand, we wanted to explore whether this form of communication could help families of people suffering from dementia to reflect and gain knowledge of their situation.
Design and method We wanted to invite people to open theatre performances on the theme of dementia. This would give the project significance beyond what was purely research related. The research group established collaboration with the administration of the ‘side stage’ at a regional theatre in north western Norway. Family members of people with dementia were recruited through the local dementia association. Those willing to participate were invited to watch the performances and participate in focus group interviews afterwards. Ten people signed up. In the information letter the participants were encouraged to note down any
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reflections they made during and after the performance. These reflection notes and an interview guide became important points of departure for the group conversations. The project was reported to Norwegian Social Sciences’ Data Services. Life with a dementia illness was portrayed through four theme performances with professional actors reading excerpts from works of fiction. We made a selection of texts from a variety of genres: novels, essays, and poems. The themes of the texts related to situations of suffering from dementia and being close to someone with dementia. In the first performance a professional actor read excerpts from the novel Melancholia II by the Norwegian author Fosse (1999). In this novel we meet Oline who has become old and forgetful. The plot is simple: Olina has gone down to the harbor and bought fish and she is taking the fish home to cook it for dinner. On her way home she is asked to come and see her brother Sivert, who is on his death bed. Oline, however, is busy getting home and postpones the visit. Gradually she forgets that Sivert is dying. Another sister-in-law visits her, Oline goes down to the harbor again, and then to Sivert, who is now dead. She returns home and the reader gets the impression that this will be the last day of Oline’s life too. Through scattered memories and associations from her childhood and younger days we take part in the poignant story of an old woman who experiences the gradual deterioration of body and mind. The readings were accompanied by musical performances with saxophone and key-board. The second performance staged a documentary essay: The light from my father’s face (Sørbø, 2010). The author read from his book, which is about the loss of ageing parents. He uses the story of his father’s last days as a point of departure for reflections on death and grief and describes how philosophy, poetry, and music gain significance in his own grief work. He describes how he was touched by Brahms ‘Vier ernste Gesa¨nge’, depicting a grief process, and Brahms’ songs accompanied the performance. The third performance presented the book The Path into the Mist (Ree Hunderi & Hunderi, 2010). This book includes poems and paintings. Inger Anne Hunderi was a devoted amateur painter and was struck by Alzheimer’s at 55. She kept on painting way into her dementia and her spouse Ola Hunderi has later written poems to the paintings. He followed his spouse closely during her illness and spent periods living at the nursing home where she spent her last days. During the performance Hunderi spoke of his life with his suffering wife and a selection of poems were read by actors. Ree Hunderi’s paintings were exhibited in the theater’s foyer. The well-known Norwegian jazz musician Karl Seglem has composed music for the book that he played during the performance. In the final performance the actors read from a collection of poems, The other gaze (Klyve, 2006).Through prose poems Klyve communicates her personal experience with her mother’s dementia. The work is set around the author’s visits to her mother at the nursing home, while in the poems she moves in time between her childhood and the present. The texts provide insight into the illness trajectory and the author’s pain as she witnesses her mother gradually ‘disappearing’. The poems were read by a young professional actress, and the poetry readings were interspersed with folk music performed on Harding fiddle. The performances were produced with an emphasis on unity, text and music were to complement or strengthen each other. The stage was equipped with scenographic elements inspired by the various texts. At the last performance a curtain was used which depicted a little girl skipping rope next to an empty wheel chair; the same motive is found on the front of Klyve’s collection of poems. Small rooms seating a relatively small number of people were used, as the purpose was to create an atmosphere of intimacy. The performances were part of the theatre’s Saturday program, which presents literary texts in the afternoon and are
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open to the public. Close relatives to persons suffering from dementia in different stages received a special invitation to the performances and to participate in the research project. The total number of spectators varied from 30 to 70. Some 2 weeks after each performance a focus group interview was performed with family members who had consented to participate in the study and had been present at the theatre performances. Seven of the ten people who initially signed up, participated in all the four interviews. Two withdrew saying it was too hard to leave the person with dementia during the afternoons. One participant withdrew after the first meeting, for unknown reasons. The seven remaining participants did not all participate in all the remaining three interviews. The informants’ relations to the person with dementia were father (of daughter), mother (of daughter), daughter (of mother), male spouse and close friend. One participant only still lived with the person with dementia. Two people with dementia lived in their own apartments; the remaining five lived in nursing homes. Two project group members participated in the interviews as moderator and co-moderator. The following foci were addressed in the interviews, which lasted around 60 minutes: Reflections on the performance itself, recognition of elements from own life, any new insight and/or knowledge, positive/negative experiences with being present at the performances and participating in the focus groups. The purpose of focus groups is to gain insight into topics which the groups’ participants have specific knowledge of; in this case: being close family of a person suffering from dementia. Experience has shown that this is best done in homogenous groups. The idea of focus groups as a research method is to facilitate natural and easy conversation between the participants without much interference from the researcher (Krueger & Casey, 2000). The participants in the present project quickly established a rapport and the conversation flowed easily. The moderator interrupted only when necessary in order to explore a theme further or move the conversation to new topics. In closing the co-moderator summed up the main points of the conversations. The summing up gave the participants a chance to voice any further thoughts or explorations, a chance that was used in a few cases. The participants later stated that participating in the project had been a good experience and that they were happy they had participated. The interviews were recorded digitally and transcribed verbatim by a secretary. The whole project group worked together in the analysis phase, inspired by thematic text analysis as described by Braun and Clarke (2006). The analysis is divided into several steps. The first step is to get acquainted with the interviews through several readings of the material. The data is then organized by coding or dividing the text into meaningful elements. When all data is coded, the next step is to identify themes by grouping related codes. Preliminary themes are then discussed and adjusted till one ends up with some final themes which illuminate the study’s focal points. All four researchers read all transcribed interviews and reflection notes and noted codes, possible themes, and main impressions for each interview and for all interviews as a whole. Preliminary themes were then discussed and adjusted with all researchers present.
Findings In the analysis phase we were particularly struck by how the participants recognized episodes in the literary texts, how the texts touched them emotionally and led to new knowledge/ insight. The aesthetic expression as a whole framed by the theatre stage turned out to be
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of great significance. The themes intertwine and touch each other. We have nevertheless chosen to present them separately, in order to reveal a greater richness of the experiences. The themes will be elaborated in the discussion section.
Recognition: ‘Reflecting one’s own reality’ In daily speech recognition as a concept is usually understood as recognising something or becoming aware of something as familiar. Such an everyday understanding would also cover the meaning our informants reported and which we have thematized under this concept. One of the informants explored the concept for us by saying: ‘One has sort of felt this’. To ‘have felt something’ obviously relates to earlier experiences. What one experiences now is recognized on the basis of something one has experienced earlier and thrust his reflects one’s own reality. To me the image was a reflection of life. My mother as a little girl with her whole life ahead of her – and now . . . There were many tears, but in a good way – I see it as a part of my own process.
This performance set the mother’s life into a historical context and created an emotional presence. The poem became the touching point that created a kind of recognition. Another such touching point was what we have called the ‘cleaning scene’ from the first performance, where Oline’s sister-in-law enters Oline’s house and offers to clean for her. One of the informants related this to her own situation, saying: ‘Yes, there I recognized my own situation. That is probably what she thinks: So now I am no longer good enough?’What the informants recognize here is the suspicion they experience from their families, when wanting to help. The help they offer may be washing the floors as in this example; it may be cooking or doing laundry. And they note that finding the right time and way to give a helping hand is a challenge. One informant said: ‘You must have respect. And that balance is terribly difficult’. To reflect one’s own reality is to get in touch with the good as well as the bad. The informants raised the issue of the significance of helping and the challenges related to this. They are afraid of hurting the ill person’s feelings and say it is easy to overstep boundaries. Several of the performances focused on memory and forgetfulness. These themes seemed familiar to the informants, something they had experienced. One informant used the notion of instant-forgetting to describe how the sufferer is immersed in the olden days, and what happened an hour ago may be already gone from memory. Another informant says: ‘She remembers someone who has been dead for 30 years, but not he who died yesterday’. Such memory loss makes the sufferer need explanations and assistance with remembering events, and may result in a constant barrage of questions about the same things, ‘the same over and over and over again’. The first couple of times this does not constitute a problem, of course, but when you – as one informant said – have answered the same question some 30 times or more, this rather taxes your patience. This is described as a very tiresome and challenging situation – especially for those who live with the person with dementia and care for him or her around the clock.
Touchedness: ‘Finding resonance in one’s own feelings’ The Irish author and Nobel laureate Samuel Beckett is said to have claimed that the theatre’s most important task is to make us laugh and cry. Beckett here expresses a faith in the
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theatre’s ability to touch human beings. There may not have been a whole lot of laughing going on during our performances, but on several occasions there were tears. When the texts resonated with the audiences’ life stories they were touched. One informant said that the performance was like ‘an echo of my own emotions,’ it created joy and sadness both, for what had been and for what was yet to come. Some said that what was presented was a revelation. Some found comfort. Some parts were experienced with a high degree of recognition and this induced a feeling of support; ‘To know that others experience the same things and have put it into words – gives one strength to keep on doing one’s job’. The informants said that being family in these cases was ‘a burden’, and in the performances they found a sort of resonance for their own emotions. They used words like comfort, hope, and melancholia. The music had a soothing effect. One informant said ‘it was a comfort of sorts to me,’ and that some sort of hope was communicated that one will be able to go the whole way. The music strengthens the emotions and helps one tune in to what hurts. ‘Sitting there became part of my own process. My everyday life is troubled and sad and that performance touched me so that it somehow went into those feelings again and touched me very strongly’. According to the informants the performances touched what was heavy and challenging in their daily lives in various ways and with varying relevance. Situations from their lives were actualized and many times this hurt, very much. One informant put it like this: It hurts, but at the same time it is a confirmation that others feel the same way, that you are not alone in a way. Others express this too and this touches you, and you feel a sort of support, so to speak.
Several informants used the term ‘it struck me’ or that something in the performance was striking: ‘It strikes you so poignantly. There is such an authenticity in it, a naked truth, in a way’. That which struck did also release emotional expressions such as tears and ‘a lump’ within. Having words given to one’s experiences was strong: ‘I sat there and again and again I thought yes, this is how it is, it was in fact quite strong so I shed many tears along the way, it struck me so horribly’. When speaking of crying, words like relief, ‘tears poured, but it was such a relief,’ were used. The identification with the characters seemed to release cathartic emotions that they earlier had not been able to express. That it had been a long time since one had cried for one’s own situation as family, and ‘yes, it was such a catharsis of the soul,’ was said.
Knowledge: ‘Accepting experiences in a new way’ Knowledge can be understood as new understanding or new insight. This content may be associated with recognition if a connection between earlier experience and new experience creates a new understanding or knowledge about a phenomenon. A premise for the present study is that this new knowledge or understanding is derived primarily through the senses (aesthetics) as an intuitive knowledge as opposed to the conceptual knowledge of logic. The findings show a connection between the art forms and increased awareness, maybe a new understanding; ‘Going from the music to the memories of what has happened, created an increased awareness – I accepted it all in a new way’. With the performances as a backdrop, the informants discussed their own relations as family and gave examples from their own lives. They said this gave them new ideas and that ‘you don’t find such things in books in a way that gives you new thoughts in the same way’.
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This was said in relation to a woman stating that she, through being part of this study, developed new ways of thinking which were helpful for her when she was with her mother. Not the least of which was a respect for others who lived in various other and maybe more difficult family relations. A central theme in one of the performances was grief and the processing thereof. The group discussed ‘the grief in the performance’ in relation to their own grief. One said: The good thing may be that we gained insight into and got fairly well described grief. I will almost say normal grief as opposed to what we go through when we lose a person bit by bit that is different.
Various points of view were voiced on losing someone ‘bit by bit’ and how this is a different sort of grief from the grief related to the death of a family member. The expectations in relation to the first performances seem to have been that the content should relate to one’s own situation. Several participants reported that the first two performances did not live up to their expectations. The first performance was not about living with dementia in the family, but about having dementia. And the second performance was more about grief than about dementia. The conversation in the focus group first revolved around the thought that this had nothing to do with the participants. The performance were about something else, although in and of themselves a learning experience. One informant who had mostly listened during the first part of the conversation, said, almost apologetically: ‘I just sat and made things become my own’. It seems as if the conversation turned after her statement, more nuances emerged as to how this content could be seen as relating to one’s own situation. An example of this is the conversation that took place in relation to grief, ‘normal’ grief and ‘different’ grief. So what was this one informant able to point to? She put it like this: He talked about his grief in relation to his parents, or his father rather, so I entered into my grief in relation to ‘‘losing’’ my mother to dementia, so I did sort of change some things . . . And one thing I truly thought was lovely was when he talked about being able to look back afterwards and rediscover the father-child relationship which disappears when you become care giver for your own parents. And it was lovely too that he said something about things turning around and things like that . . . So I recognised several things even if it was not about the exact same things. I interpreted it based on what I needed.
What this informant brought out may be considered as a turning point for the group. They gained a new understanding which in its turn expanded their notion of relevance.
The aesthetic expression: ‘A comforting and harmonious whole’ The concept of aesthetics derives from the Greek aesthesis, meaning sensory knowledge. It has two fundamental meanings. One is knowledge derived through the senses, i.e. sensory experience, sensory knowledge. The other is teachings about ‘what is beautiful/beauty’ in art. Beauty fascinates and holds us, whether or not we are able to explain precisely what it is. The two meanings are, however, integrated and mutually dependent on each other. A more or less explicit premise for the present project was that the theatre room in itself stimulate to a stronger emotional commitment. The aesthetic experience will vary, as it did for the informants. The experience of art may be described as something good. Some informants described the performances
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as ‘emotional’. One informant put it like this: ‘It is absolutely enchanting to my ears. I just found it so lovely. And that Oline it was so good, her with her peculiarities. I experienced so many fine images when they started reading’. The group as a whole expressed that music creates atmosphere in various ways, depending on what it is about and how it is performed, but it always evokes feelings. ‘Music is balm to our soul’, one informant said, adding that’ it may hurt, but it may also heal’. The informants also touched upon how the music functioned in the performance as a whole. Among other things they noted that ‘the reading sessions were softened by the musical elements’ and further that ‘with the music a completeness is created in the experience which has a comforting effect’. In some situations the music offered a breathing space, one could lean back and recover. Sometimes, however, the music was experienced as ‘a disturbance’, but most of the informants were of the opinion that the music fit in well, and strengthened the experience. When the performances worked for the informants we encountered statements like ‘It was just spot on, all of it’. This expressed the experience of a fine harmony between the performance of texts and music and the exhibition of images. There was talk about text and music strengthening each other or going well together,’ it was a nice experience, the pictures, the music, and all of it, it all fell together nicely’. The same informant said that there was something recognizable in this. This may indicate that the good experiences release something. That contact, that music, those words, it all did something to you and I thought that music, it can make you feel sad, but it was also a relief. It was such a good feeling . . . like a knot dissolved. So it was really a good feeling.
The room and stage set became part of the total experience, which was also commented on by the informants. They said that the atmosphere in the audience was good and that people were very quiet. One of the informants said this to the participants in the group who had not been present at one of the performances: It was the stage set too, the atmosphere. There was a young girl skipping rope, and there was the wheel chair. And I thought the contrasts, it was so simple but so very thought through – and it was set up so that with heat the stage set moved, so it looked almost like she was skipping . . . It was such a very strong effect, with such small means. You don’t need much in the way of a stage set, but there was the wheel chair and you had to see it.
Discussion If our descriptions of the informants’ experiences are representative, we may initially assume that the performances contributed something new and very important to their understanding that health information as such probably would not have done. The effect of the information in its theatrical form may be seen in relation to two perspectives: the significance of the room or space, and the aesthetic form. Rooms and architecture may be seen from a power perspective. Foucault has analyzed the way older institutions were built around the controlling gaze (Foucault, 1963). There will always, in health institutions, be an asymmetrical power relation between the giver and receiver of care. This not necessarily imply any abuse of power, it is simply an acknowledgement of the fact that the roles are quite different. Information in the health
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services will be marked by the fact that those who have the knowledge are ‘at home’ and are rulers of the space/room when in the hospital or in other health institutions, while the receivers of the information are guests and must find out what it is all about. It is neither possible nor desirable to take this relation of authority out of the health services. The specialists will always know more about illness and health and must make decisions based on professional knowledge. One may nevertheless discuss whether the health institutions to a greater extent revolve around the needs of the professional staff, more than around the needs of the users. This is particularly notable in relation to the highly driven surgical techniques of current medicine. If one compares older and newer hospitals, one will find that older hospitals to a greater extent were built around attributes in our surroundings considered to contribute to the healing of the patient. The parks surrounding some hospitals echo the cloisters and gardens of medieval convents and monasteries. More recent hospitals are constructed around treatment activities, while aesthetic expressions are referred to the waiting rooms, corridors, etc. (Gjengedal et al., 2008; Martinsen, 2008).This makes it tempting to assume that the patient’s experience is perceived as irrelevant and a distraction for the medical treatment. When information and the processing of such information are moved into the theatre and artistic forms of expression are used, the focus changes. It becomes primarily about identification between what happens in the text/on stage and the audience. The power relation between expert and user is not realized in the same way, it may, however, be reflected in the texts or the roles. This is an important distinction. When one goes to the theatre, it is to experience and participate in the existential dilemmas being depicted on stage. The distinction between patient and doctor, between specialist and lay person, disappears. There will of course be a separation between stage and audience, but when the performance is a success an identification is created which in a certain sense abolishes this separation. The small, intimate room is constructed to pull the audience into what is happening on stage, but with a certain distance: the spectators are not these persons, and may reserve themselves and pull back when needed. This critical distance between the performers and the audience allowed the informants to reflect on their own life experiences. Through the exchange between the experience of one’s self and the identification with the characters on stage, there is an interchange between the universal and the particular, and the spectators experience their problems as universal. Herein lies the catharsis effect, a notion also used by one of the informants. The same duality of identification and distance is what is attempted understood in aesthetical theory. Gadamer (1960/2010) uses the first part of Truth and Method to describe the aesthetical object and what goes on in our understanding of it. He turns against the purely empirical model, satisfied as it is with what can be measured, and against an aesthetical understanding which makes the experience of art into pure subjectivity. The work of art has a pretention of truth; in the work of art there lies an ambition to formulate the truth of the matter one describes. In order to catch what is particular about a work of art, Gadamer describes the game. Any game is based on the participants respecting the rules, even though they are fictitious or constructed. The game presupposes that the players take it seriously; one plays as if it is important to win – even if it is just a game. A game where nothing is invested becomes boring and meaningless. In the aesthetical game one is aware that it is about a text or a role which may be more or less made up. When a biographically oriented text is published as a book or made into a performance, it is also made into a role; the question of whether it builds upon biographical material
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becomes secondary to the question of whether this is a role or a story one can identify with or enter into; i.e. whether it is ‘true for me’. The difference between the concept of truth in the natural sciences and in art lies in this, that the first is true objectively, independently of the spectator, while the truth of art is completed through the reinterpretation of the spectator’s or reader’s own life. When the performances were successful in reaching the audience, this is a result of the contents being ‘played’ or ‘acted’ by the audience as well. The audience enters into and identifies with the roles and the stories, and understands their own stories in light of what happens on stage. A notable large part of the group interviews are about the informants’ own stories, which they understood in a new way, or felt were explored, in the performance. This new understanding of their situation may be explored through Gadamer’s understanding of the effect of a work of art. One enters a work of art from one’s own horizon, from one’s own experience, and has a preliminary expectation of what will come. This makes all art experiences unique. But when one truly understands a work of art, one’s expectations are conquered by the text or the work of art, and the preliminary understanding changes. The fusion of the work of art with the individual’s expectations creates a new understanding in each individual case. This represents an opportunity to understand something new and different, something one has not understood before. And when this opening occurs, one understands one’s own life in a new way. Such a process was described by the informants: they say they gained new courage and faith in their ability to ‘keep on going’. In this there are play and truth both. The original biographical truth behind the text (with i.e. Hunderi or Klyve) becomes simply a point of departure for a more universal truth about what it is all about: The experience of illness in close family. The performance of the text opens up to other experiences, and these experiences affect the truth of the work. This truth becomes universal, but in such a way that the truth of the work of art is fulfilled in a new way every time a new person understands it. ‘Any encounter with the language of art is an encounter with an unfinished event and is itself part of this event’ (Gadamer, 2010, p. 99). Herein lies possibly the strongest potential for the use of the theatre in relation to life challenges like the ones described in this project. The challenges are made universal, and through this, they are imbued with dignity. The whole aesthetical institution, with its competence regarding texts, theatre, music, and direction, makes what is originally a painful and maybe shameful reality into something universally human. In all its pain this harbors human qualities of love, expressed as rays of light. ‘It may make you feel sad, but it was also a relief’. This is what the informants described happened when the performances hit spot on, and they were truly touched. And herein lies the potential of taking this kind of problem into the aesthetic field.
Reflections on methods In retrospect one may ask whether it was the theatre performances or the discussion in the focus groups that created new knowledge. There is no doubt that the performances themselves started a process of heightened awareness in the participants. We saw this already in the reflection notes. But on several occasions it became evident that the discussion in the groups enabled a furthering of such awareness. The groups seemed to provide a safe space for the informants work on their feelings and to foster a sense of community and support. Our point of view is thus that the results of the focus groups of
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this project support the view that artistic expressions may constitute an important form of communication. But the same results also tell us that if one is to reap the full benefits of this type of health information, it may be useful to include subsequent conversation groups. That will enable the participants to start their individual process and exchange experiences with others in the same situation. A weakness of this study may be that participation varied at the performances and the focus groups; not all seven informants were present during all performances or participated in all group meeting. This was in part compensated for by having four performances and four focus groups with the same participants. Those unable to attend all performances were given access to the original texts performed on stage. Those who for a variety of reasons were unable to participate in all group conversations, but were present at the performances, wrote reflection memos afterwards. Our main impression is that all participants had benefited greatly from participating in the project, including those who did not attend all events. This was affirmed during the final focus group.
Conclusion The study shows that it is meaningful to use the stage of theatre as an arena for communicating with families of individuals with dementia. The power relations are evened out. Although there may exist an asymmetry between the actors on stage and the audience, the audience is given an opportunity to identify with the stage actors’ various roles. The informants’ experiences in their often challenging daily lives enable them to recognise and identify with what they see on stage. When such life experiences are communicated through the texts of others, an understanding develops that these are universal, human challenges. This creates a new experience of dignity and an understanding of the importance of what they are in the middle of. One is not alone in the experience of grief and pain. From the recognition of a painful daily life, comfort, consolation, and new insight spring forth. Funding The authors disclosed receipt of the following financial support for the research: The Regional Research Fund of Mid-Norway and Mid-Norwegian Network for Health and Social Sciences.
Acknowledgement The authors express their gratitude to Rolf Magnus Orø for his valuable cooperation and skillful direction and Linn Kjerland for translation the manuscript into English.
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Author Biographies Eva Gjengedal is Faculty of Health Sciences and Social Care, Molde University College, and is a Professor at Department of Global Public Health and Primary Care, University of Bergen, Norway. She obtained her PhD in nursing science from the University of Bergen in 1994, and is now teaching master and PhD students in health sciences. She has published several book chapters and research articles on patient experiences, health care ethics and methodology. Else Lykkeslet is an Associate Professor at Faculty of Health Sciences and Social Care, Molde University College, Norway. She obtained her PhD in pedagogics from the
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University of Tromsoe in 2003 and is teaching master and PhD students in health sciences. Her research interests are related to different kinds of knowledge and dementia care. Jan I. Sørbø is a Professor at Volda University College, Norway. He obtained his PhD in comparative literature from the University of Bergen in 1998, and is teaching in social studies, primarily in ethics and the philosophy of science. He has published several books, primarily on literary topics. Wigdis Helen Sæther is an Associate professor at Sør-Trøndelag University College, Trondheim, Norway where she teaches at the Master’s Degree Program in Mental Health. In addition she is an adviser at Norwegian Resource Center for Community Mental Health, Norwegian University of Science and Technology, Trondheim. She is trained as an anthropologist and a psychiatric nurse and is doing research in art, aesthetics and culture related to mental health. She has published a book about art, aesthetics and health care.
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