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Out of the Cupboard ... to the Brightness

KEYWORDS:
dementia
phenomenology
dance therapy
wellbeing


This paper outlines a 1993 research study which attempted to describe and understand moments of experiental meaning within the dance therapy process for a patient with dementia. The writer places the study in the context by discussing the nature of dementia and the common view of it as loss of self. An overview of her phenomenological methodology in the early stages follows, with later interpretation through reference to literature in the fields of dance, neurology, and dementia care. The main discussion, however, revolves around the understandings gained concerning the meaning of the dance therapy experience for the patient. The paper concludes that dance therapy offered not only a quality experience in the moment but a change in the patients sense of self.

Introduction

I have called this paper "Out of the cupboard ...to the brightness". These are the words the person who took part in my research, 'E ', used to describe her experience of dance therapy. Could one wish for words any more vivid and expressive? As I struggled for months and months to look, to see, to note down page after page of observation, to make sense of it all - and like all writers of a thesis wondering at times why I was doing it anyway - the emergence of this wonderful person into the brightness inspired and sustained me throughout.

Trying to capture in a short paper a piece of qualitative research such as this is a daunting task. While I very much want to concentrate on the experience itself and what I learned about E's experience of dance therapy, it is necessary to give some time to two important areas, namely the context in which the research took place (dementia), and the research methods which provided the grounding for my subsequent conclusions about the dance therapy experience.

But firstly a summary of the research, which was entitled An attempt to describe and understand moments of experiential meaning within the dance therapy process for a patient with dementia.The process involved a three-quarter hour dance therapy session each week for four weeks with an 85 year old patient with dementia. The dance sessions were totally improvised and a music therapist provided improvised music. The sessions were video and audio taped. Several hours after each session the patient watched the session's video and this in turn was video-taped so that the patient's responses (verbal and nonverbal) might be recorded.

The Research Context: The Nature Of Dementia

Dementia (of which Alzheimer's is the most common form) has surely come to equal if not surpass cancer in striking us with fear and a sense of doom and hopelessness. Cancer ravages the body but dementia, by attacking the brain, is seen to strike at the very core of our humanity - the self. It has been described as a "deterioration of intellect so that the power of creative and intelligent thought is progressively diminished... not merely a diminution of intellect but a dissolution of the self" (Gidley and Shears, 1987: 18). One cannot get a more damning verdict than that.

Dementia from the current medical perspective is viewed as a disease which causes progressive and irreversible brain damage, whereby the higher functions are the first affected with ongoing regression until even the earliest, most basic abilities are lost. And along with these go feelings of dignity, self worth and wellbeing. For the families it is painful to see their loved one present in body but absent in mind.

While there is no denying the difficult and painful situation of people with dementia, I would just note that there is already research which questions for instance the connection between brain damage in dementia and an inevitable deterioration through pre-determined stages (Garratt and Hamilton-Smith, 1995; Kitwood, 1997). Further, out in the field, carers are finding that approaches which emphasise remaining abilities rather than deficits and which acknowledge the carer role in empowering patients are more useful in improving quality of life for dementia sufferers. Dance therapy would appear to fit in very well with these person-centred approaches.

Research Methodology

Background to the research

The research study presented here was my second piece of dance therapy research in the field of dementia and was conducted in 1993. In a first study in 1991, as a very inexperienced researcher, I carried out research along fairly traditional lines (hypothesis, operational definitions, measurable variables and so on). Certainly some interesting material emerged but, by and large, the study seemed to miss the point, to miss those very aspects which are central to dance therapy, in particular the connection between mind and body and the meaningfulness of human movement. It was this that led me to a quite different methodology for this second study.

Methodology
After this first research experience, I decided to go uncompromisingly for a post-positivist (qualitative) methodology which would enable me to study dance therapy in a way which coincided with my research interests and which would help me answer my question in a meaningful way. Implicit in my choice of methodology were the following :
  1. A desire to explore the meaning of the dance therapy experience for the patient rather than the benefits from a clinician's perspective.
  2. A desire to study dance therapy in its own terms rather than make it fit, for example, a natural science model.

I wanted a methodology which would be sensitive to and shaped by the subject being studied. At the same time I wanted to ensure my methodology would also meet standards for research validity. McNiff (1987: 291) acknowledges such difficulties for arts researchers and points out the need for researchers to develop research methods which honour "realms of knowledge and experience that can be grasped only through forms that correspond to their passion, complexity, and illusiveness".

I should also add that the nature of dementia added to the methodological difficulties.

I chose a phenomenological model, a model which stresses a return "to the things themselves" (Husserl, in Barrell, et al., 1987: 446). I don't propose to discuss phenomenology in detail, except to refer briefly to its impact on the methods I adopted. Like the best of models, it was not a straitjacket. Rather, it offered guidelines and signposts and was adapted throughout the research process.

The major characteristics of the research with its phenomenological focus were :

  1. The method was emergent, adapting to the material. While I began by studying the 'significant moments' of session one, I later widened my focus to include a study of the process as a whole over four dance therapy and four video-viewing sessions.
  2. The dance therapy sessions themselves were not planned in advance. I worked with the movement as it presented itself.
  3. Data were collected through multiple modes (video and audio-tape, written transcripts of conversation) and from multiple perspectives (researcher as participant and as observer, music therapist, patient, patient's daughter, staff). A Devil's Advocate validity procedure was also used.
  4. Meaning was not imposed beforehand through operational definitions but was allowed to reveal itself. In practical terms, this meant that the video-taped dance material was at first described 'naively' (setting aside as much as possible my own preconceptions, that is 'bracketing'), followed by an interweaving process of focusing and reflection, with constant moving between different perspectives on the material and the video material itself. Significant moments, which were selected for in-depth analysis were not defined in advance but were selected intuitively as moments which somehow stood out. Their character emerged out of the process of description, focusing and reflection on the video material.

At a certain stage, it seemed necessary to me to move beyond a 'pure' phenomenological approach and to place my observations in a wider context by reviewing the literature in the areas of dance, Laban Movement Analysis, body/mind, neurological perspectives on the self and person-centred care in dementia. All of these served to enrich and tease out the meaning of the dance therapy process.

E's Experience Of Dance Therapy (as understood in this study)

I would like now to look at the experience of dance therapy for the patient, E, first in terms of the individual session, and then, as happened in the research process, drawing back to look at the impact of the sessions as a whole.

Session One :

E came to this session feeling rather tired and flat. However, from the moment that we both acknowledged her tiredness, she seemed in fact to achieve moments of increased energy. The story of this session seemed to be about relationship - testing out, challenging both the relationship and oneself, leading to acceptance as well as self acceptance, a ceasing of the struggle and simply being together as friends.

Out of session one, came three significant moments, one of these in the latter stages of the session lasting for ten minutes. From my in-depth study of these moments, I came to see them as moments characterised by complexity and quality of movement and affect; energy/aliveness; active rather than passive attitude; total involvement, focus and presence; congruence and unity in being and action. There was evidence of understanding and appropriate response. The presence of such qualities, uncharacteristic of dementia, suggested to me that these were moments of dance as well as being moments when E's personality appeared more whole and integrated.

The Experience as a whole :

Most people, myself included, would say that the important thing in working with dementia sufferers is the quality of experience in the moment (and there is no doubt it is of prime importance). It is also commonly supposed that growth in awareness or insight is not possible in people with dementia. Certainly there was no clear development nor linear progression from session to session - each dance therapy session was quite different and very much reflected the feeling of the moment and the day. On the other hand, a certain continuity and development were evident, for instance in the developing relationship and trust between patient and therapist.

The decision to look at all sessions and inbetween session times and most importantly to listen to what E had to say, added whole new dimensions to my understanding of her dance therapy experience. It not only pointed to a quality experience in the here and now but also a process of change and growth in self perception. Over the four sessions, there was a progressive finding of herself. When viewing session one, E admired the qualities she saw on screen but could not identify that it was she who was there and who had those qualities. Over time, she came to recognize herself and reintegrate those qualities into her image of herself - qualities of strength, humour and so on. Whereas at first the qualities and the action were out there on the screen, in later viewings the focus was not so much on the video action per se, but more as a stimulus to her to think and talk about who she was and what she had done.

E's experience of dance therapy was a rich and complex one which is hard to do justice to here. However, in the surnmary which follows I offer the power of E's own words to sum up the nature of the dance therapy experience for her.

  • The qualities which emerged were an authentic expression of herself pre-dementia. "Gosh, it's so like me". She had been a mischievous and daring child, doing things she wasn't supposed to do. She had grown into a strong and active woman with a good sense of humour and she was a strict parent. (She knew what children could get up to!) "I was always tough". She had always loved music and dance.
  • The dance experience seemed to raise themes which were personally significant and a reflection of E's self, and her life. She described the sessions to her daughter as "fights in the water", which appeared connected to a significant episode in her life history, The River Story. This story she told during one of the video viewing sessions as a very vivid reminiscence. It seemed to be one of those stories which expressed a life theme containing a positive image of herself as a strong, daring person with a mischievous sense of humour.
  • She began to feel good about herself. "I'm glad I'm strong."
  • She also retained her feelings of self-esteem outside of the session. "I often get a remark...on how old I am and they say that they can't believe it and they think I look, you know, young. And they won't believe it and somebody else will say it, and I think I must look good...But eh, I'm glad I am alive."
  • The viewing of the dance experience led her to reflect on her past both inside and outside of the sessions. "It's brought back things from long ago to me." "I only thought yesterday I must have grown up with strength."
  • She was able to compare the past with he present. "(I) haven't been up to anything at all now. We used to play lots of things and do lots of things but I don't now."
  • She enjoyed the sessions and was flattered she'd been asked. "I thought how did yo pick me up, what did you see in me?"
  • She acknowledged feeling better since having the dance sessions. "I've got together again."
  • There seemed to remain some memory of the sessions, or at least of our relationship, after the sessions had ceased. Much later on, viewing of the video with her daughter or even listening to the audiotape of the music would bring up certain of the themes again for her. While I'm sure she was not aware of exactly who I was, where we'd met and so forth, when I visited her many months later in a nursing home, she greeted me as someone she had known for a long time.

Sacks said many of his awakened patients used metaphors of light and dark to describe their awakening. Here are some of E's as she summed up the experience during the last video viewing session:

  • "Thank you for bringing me out of my shell";
  • "It's brought the dullness out from me ... to the brightness";
  • "And I think it's brought me out ... Wake up!";
  • "So that's brought me out of my cupboard".

The experience was overall a positive and empowering experience. E's daughter on seeing the video described what she saw thus: dramatic, creative, empowerment, coming from within, enjoyment.

Conclusion

I believe that the dance therapy sessions gave E an opportunity to be herself again, to recover the self she was in danger of losing as a patient with dementia. The viewing of the videos appeared to offer her an opportunity to reflect on the experience. I believe the interaction of the two, action ard reflection, enabled her to rediscover and reintegrate her old self into the present, a process which was positive and empowering.

Kitwood and Bredin, researchers into person-centred care in dementia, describe four global feeling states which underwrite what they call a feeling of "relative wellbeing" (1992: 283) in dementia patients: a sense of personal worth; a sense of agency; a feeling of being at ease with others; hope - a sense that the future will be in some way good. In these terms I believe E did attain a state of relative wellbeing. As in my thesis, I would like to end with the words of D.H. Lawrence (Sacks 1991: 243), which to me totally depicts E as I knew her in the dance.

A presence
as of the master sitting at
the board
in his own and greater being in the house of
life.

Postscript: (In E's words)

The River Story

We'd go swimming in the river and that's what we shouldn't. (E laughs and becomes very animated as she tells the story.) When I think of the things we did, I laugh. And Dad came round and I shouldn't have been there. He told us we wasn't to go down you see. (She chuckles here.) The others got off and I was running round with Mum and Dad after me with a stick ...
I was always doing something I shouldn't (Laughs) Climbing trees, always climbing trees, swimming without any clothes on. (H and E laugh together at this.) Dad would tell me, don't you go down to the river today or you'll get it. No Dad (E's body straightens up at this, like a cheeky child.) As soon as he's out of sight, rrrooo (hand gesture of running) down to the river. (Laughs.) Little devils
(Hill, 1995, p. 182).

Heather Hill

B.A., Grad. Dip. Movement and Dance. Grad. Certificate Dance Therapy, M.Ed. (LaTrobe) and a professional member DTAA, is currently enrolled in doctoral studies on personhood in dementia care at Lincoln Gerontology Centre, Latrobe University. She has worked as a dance therapist since 1985, particularly in geriatric and adult psychiatry, and intellectual disability.

This article was first published in Dance Therapy Collections 2, a collection of articles by Australian dance therapists.
To buy a copy of Dance Therapy Collections 2, contact :
Jane Guthrie, email -
Included on this website by kind permission of Heather Hill

References :

  • Barrell, J., Aanstoos, C., Richards, A. and Arons, M. (1987). Human research methods, Journal of Humanistic Psychology, Vol. 27, No. 4, pp.424-457.
  • Garratt, S. and Hamilton-Smith, E. (1995). Rethinking Dementia - An Australian Approach, Ausmed Publications, Melbourne.
  • Gidley, I. and Shears, R. (1987. Alzheimers, Allen and Unwin, Sydney.
  • Hill, H. (1995). An attempt to describe and understand moments of experiential meaning within the dance therapy process for a patient with dementia. Unpublished Masters Thesis, LaTrobe University, Melbourne.
  • Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First, Open University Press, Buckingham.
  • Kitwood, T. and Bredin, K. (1992). Towards a theory of dementia care: Personhood and wellbeing, Ageing and Society, Vol. 12, pp.269-287.
  • McNiff, S. (1987). Research and scholarship in the creative arts therapies, The Arts in Psychotherapy, Vol. 14, pp.285-292.
  • Sacks, O. (1991). Awakenings, Pan, London.
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