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Creative expression, dementia and the therapeutic environment 2006

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CREATIVE EXPRESSION, DEMENTIA AND THE THERAPEUTIC ENVIRONMENT By Dalia Gottlieb-Tanaka Dip. The Academy of Art and Design, Bezalel, 1975 M. Arch., the University of British Columbia, 1980 A THESIS SUBMITTED iN PARTIAL FULFIMENT OF THE REQIUREMNETS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY In THE FACULTY OF GRADUATE STUDIES (Interdisciplinary Studies) [Health/Education/Arts/Architecture] THE UNIVERSITY OF BRITISH COLUMBIA June 2006 © Dalia Gottlieb-Tanaka, 2006 Abstract This study aims to explore the physical environment in arriving at an understanding of the administration ofand level ofsuccess ofcreative expression programs that were carried out with seniors who have mild cognitive impairment to moderate dementia at the L ‘Chaim Centre and at the Margaret Fulton Centre, two adult day care centres. I am interested in the circumstances that enhance or limit the seniors’ ability to express themselves creatively. Understanding the physical, cognitive and social abilities of this population helps establish the foundation for strategies that can manifest themselves in the shape and form of the physical environment. The physical envelope that surrounds the seniors, spiritually, emotionally and physically, embodies the reflection of the seniors’ world whether at home, in a residential setting or in institutional care. This envelope could serve as a therapeutic environment that fits with one of my long-term goals: To provide opportunities for creative expression activities with educational components that are supported with appropriate architectural planning and design. This study is based on qualitative research in which a/r/tography is employed as the overall philosophical approach and as a methodology for data collection. A/r/tography seeks knowledge through relational conditions, living inquiry and a commitment from the researcher as an artist and educator to a process of questioning. It also invites participants to be part ofthe study process and experience an ongoingprocess of inquiry. This method fits well with the making of architecture as practice and theory. The research shows that the physical environment has the potential to attract seniors with dementia to stay in the space and become engaged in creative expression activities. But the space alone is not enough to engage the seniors in these activities. Success in implementing a creative expression program is linked strongly with an understanding ofthe seniors’ physical and cognitive abilities and with the commitment of the facilitator to implement aflexible approach to each individual. II Acknowledgments This research was achieved with the help and input of many people and organizations. True to its interdisciplinary approach to research, this compelling topic on creative expression, dementia and the therapeutic environment reached across many disciplines. I would like to acknowledge the many seniors with dementia I interacted with during the last seven years, especially at the L’Chaim and Margaret Fulton Adult Day Care Centres in Vancouver and North Vancouver. The seniors were a source of delight, inspiration and deep emotional connection. Many seniors from my early years of research did not live to see this dissertation or remember they were part of it. I would like to thank Maureen Murphy, the Director of Margaret Fulton Centre and Debbie Cossever, Program Director at the L’Chaim Centre for being such good hosts and wonderful willing partners in this study. I would like to mention Sylvia Sinclair, an artist and teacher. Although she was not included in this study, Sylvia was an incredible source of inspiration to me in my quest to unlock the psychosocial mysteries of dementia. In a long list of friends and supporters, I would like to acknowledge, Sheila Jones, a writer and editor, who accompanied me for the last 30 years through all my endeavours. Her solid support that never failed is one of the reasons for my achievements in this field and others. I have a special place in my heart for my supervisor, Dr. Rita Irwin, from the University of British Columbia who, as my steady unwavering guide, managed difficult situations to bring me through to this moment. Dr. Irwin, as my research supervisor, is joined by Dr. Marlene Cox-Bishop from the University of Alberta, who worked with me from the beginning of my studies, Dr. Habib Chaudhury from Simon Fraser University, whose gentle guidance was very much appreciated and Dr. Howard Feldman, from UBC, who answered my desperate need to include the medical profession in this work. I would like to add to this group Dr. Jeff Small from UBC, who encouraged me in the early stages of my doctoral program. A sincere thank you goes to Dr. Annalee Yassi, the Director of the Institute of Health Promotion (INPR) at UBC and Dr. Jim Frankish, the associate director, for allowing me to use their premises and enjoy their support along the way. Among the staff at IHPR that helped in many ways were: Julieta Gerbrandt, Jeanette Hansen and Brenda Kwan. I would like to acknowledge Dr. Remi Quirion, Scientific Director of CIHR and Dr. Bruce Miller, Professor ofNeurology at the University of California at San Francisco (UCSF), who are probably unaware of the impact they had on my newly developed career. In the last two years I was fortunate to be accompanied by David L Brown, a videographer and a dear friend, who documented my work with seniors with dementia and was always there to help in good times and in bad times. Other contributors were David Jones, who helped to sort out the formatting, Frank Van de Ven, who helped search for information no one could find. Thanks from the bottom of my heart to Julie Marez for her support and great help in using her expertise at AutoCad and producing all the drawings for this work. I keep a special place for my family in this acknowledgment. Mineo Tanaka, my husband, knew when to step in and lend a helping hand - when I needed him the most. I valued his feedback and support through the whole experience of being a mature student with a family and many other obligations. My daughter, Carmel, accompanied me with her wonderful musical talent in many of my sessions with the seniors. With insight, compassion and understanding of this population well beyond her years, she provided me with a sounding board in many of the difficult, wonderful and exciting situations we experienced together. I dedicate this work to her, Mineo and my parents who would have been so proud to see me graduate. 111 This research was supported by the Alzheimer Society of Canada, the Scottish Rite Foundation, The Lions Gate Research Foundation, The Society for the Arts in Health Care, and The American Society on Aging. Their financial support enabled me to focus on my work and reach others in an effort to advance research in dementia care. iv Table of Contents Abstract ii Acknowledgments iii Table of Contents v List of Figures viii List of Attachments ix List of Drawings ix CHAPTER I: INTRODUCTION I Thesis Organization 1 Foreshadowing I Overview of the Research Problem 3 Research Questions 4 Objectives 4 CHAPTER II: LITERATURE REVIEW 6 The Therapeutic Environment 6 Current Arts-Based Programs 7 Definiton of Dementia 8 Definition of Everyday Creativity 9 Arts-based Programs in Dementia Care: The Literature on Special Care Units (SCU) versus Non-special Care Units (non-SCU) 10 Music Therapy 14 Strengths and Weaknesses as Music Therapy Links to Creative Expression Abilities and Dementia 15 Music Therapy and the Arts Room in a Therapeutic Environment 17 Occupational Therapy 17 Occupational Therapy and the Arts Room 19 Art Therapy 19 DaIley’s View on Art Therapy and the Therapeutic Environment 23 McNiff’s View on Art Therapy and the Therapeutic Environment 24 Rubin’s View on Art Therapy and the Therapeutic Environment 25 The Performing Arts 26 Reminiscence Therapy, Life Review, Life Reflection and Storytelling 28 Reminiscence, Life Review, Life Reflection, Storytelling and the Therapeutic Environment 31 Review 31 New Directions for Research and Implications for Practical Implementation 32 Recommendations 33 Emerging Approaches to Creativity Research 34 Other Perspectives on Creativity and Expression 38 The Meaning of Creativity, Gaps in Information 40 Creativity and Aging 41 Why Creativity and Creative Expression Are Important 43 How Seniors with Dementia Experience Everyday Creativity within the Aging Process .. 43 Physiological Changes Associated with Aging and Dementia 45 Cognitive Changes Associated with Aging and Dementia 50 Social Cognition, Aging and Dementia 52 V CHAPTER III: METHODS .56 Qualitative Research 56 Selecting Qualitative Inquiry 56 AIr/tography 57 Summary of Research Methods 66 Ethics in Research 66 Sites Selected 69 The Margaret Fulton Adult Day Care Centre 69 The L’Chaim Adult Day Care Centre 72 Participants Selected 72 Data Collection 74 Analyzing Data 75 Tools for Collecting Data: Interviews 76 Interviews with Participants at Margaret Fulton Centre 76 Interviews with Participants at L’Chaim Centre 78 Significance of Interviewing Participants at Their Home 79 Tools for Collecting Data: Nr/tography Field Notes 79 Significance of AIr/tography Field Notes and Analysis 85 Tools for Collecting Data: Filming 87 Tools for Collecting Data: The Intervention — The Creative Expression Activities Program 88 Timeframe for the Sessions 89 Selected Sessions from the Creative Expression Activities Program 89 Observed Everyday Creativity 89 Engaging in Creative Expression Activities 90 Tools for Collecting Data: Space Diagrams 91 Example of Video Transcript and Analysis 92 Analysis of Videotaped Session 113 CHAPTER IV: UNDERSTANDINGS DERIVED THROUGH INQUIRY 115 Themes That Emerged from the Literature Review 115 Design Principles for a Therapeutic Environment 115 Applying the Five Design Principles at the L’Chaim and Margaret Fulton Centres 116 General Recommendations 120 Design Principle 6: Provide Opportunities for Different Levels of Participation in Creative Expression Activities 121 Design Principle 7: Provide Opportunities to Celebrate One’s Ethnicity 122 Physical Changes to the Environment and the Users’ Response to Them 124 Summary of Understandings Based on the Inquiry 127 Furniture Arrangements at the Margaret Fulton and L’Chaim Centres 127 CHAPTER V: DISCUSSION 164 Reviewing the Themes 164 Reviewing the Design Principles 165 Reviewing the Understandings Reached 167 In Dementia 167 In Creative Expression Activities 167 In the Therapeutic Environment 168 Questions for Future Inquiry and Closing Comments 171 The Overall Significance of the Thesis 172 vi Epilogue .175 Bibliography 179 Appendices 199 A. Samples of Field Notes and Interviews at Margaret Fulton and L’Chaim Day Care Centres B. A/r/tography Field Notes at Margaret Fulton Adult Day Care Centre C. Session Planning D. Samples of Consent and Assent Forms E. Sample of Interview Questions vii List of Figures Figure 1: Overview of Thesis 5 Figure 2: Selected Approaches to Creativity Research 9 Figure 3: The Conceptual Framework of the Person-Centered Model versus Medical Model 55 Figure 4: Locations of Margaret Fulton and L’Chaim Centres 69 Figure 5: Exteriors of Margaret Fulton Centre in North Vancouver, BC 69 Figure 6: Interior Shots of Margaret Fulton Centre in North Vancouver, BC 70 Figure 7: L’Chaim Centre Exterior Shots 71 Figure 8: L’Chaim Centre Interior Shots 72 Figure 9: Participants at the MFC and LC Centres 73 Figure 10: Margaret Fultori Centre Art Facilitator and a Participant 76 Figure 11: L’Chaim Participants Engaged in Art Activity 78 Figure 12: A Senior with Moderate Dementia at the L’Chaim Centre Designs her Creative Expression Studio 84 Figure 13: Participants at L’Chaim and Margaret Fulton Centres 85 Figure 14: Participants at the L’Chaim Centre Engaged in Music Activity 86 Figure 15: David L Brown, the Videographer, Sets up the Cameras at the L’Chaim Centre 87 Figure 16: Turning the U Table Around with the Opening Towards the Windows 88 viii List of Attachments A: Gottlieb-Tanaka, D. (Producer/Facilitator) & Brown, D.L. (Videographer). (2006). Margaret Fulton Adult Day Care Centre in North Vancouver, BC. (DVD Video 1 of 2). Canada. Unpublished raw data. B: Gottlieb-Tanaka, D. (Producer/Facilitator) & Brown, D.L. (Videographer). (2006). L’Chaim Adult Day Care Centre in Vancouver, BC. (DVD Video 2 of 2). Canada. Unpublished raw data. C: Gottlieb-Tanaka, D. (2006). Creativity, Dementia and the Therapeutic Environment. (CD 1 of 1). Unpublished doctoral dissertation. University of British Columbia, Vancouver. List of Drawings DrawingLC—1 131 Session One — Music, All tables are arranged into one large rectangular shape Drawing LC—2 134 Session Two - Repeated Music Activity, Tables arranged in a U-shape with opening facing main entrance Drawings LC — 3A and 3B 137 Session Three — Friendship 3A — Detached dining tables 3B — Back to a U-shape arrangement with opening facing main entrance Drawing LC-4 140 Session Four — Bending Wires. Strength versus Weakness, Triangle Drawing LC—5 142 Session Five — Designing Creative Expression Studio Drawing LC—6A 146 Hand Sketch of Proposed Floor Plan at L’Chaim Centre Drawing LC —68 147 Proposed Floor Plan at the L’Chaim Centre Drawing LC — 6C 148 Proposed Floor Covering Design —Implemented at the L’Chaim Centre Drawing MF — I (small room in the back) 151 Session One — Friendship, Two tables are arranged into L shape Drawing ME —2 (art Therapy Room) 154 Session Two — Music, Two tables side by side creating one table (8 feet wide by 8 feet long) Drawing MF — 3 (courtyard) 157 Session — Music and Drumming, Two round garden tables Drawing MF —4 (small room in the back) 159 Session Four — Massage and the Walkout Drawing MF—5 162 Proposed Changes to Floor Plan at Margaret Fulton Centre, Adding a new deck to the back room and expanding art area and interior wandering path ix CHAPTER I: INTRODUCTION Thesis Organization This dissertation is composed of five chapters. Chapter one, the introduction, includes a section on foreshadowing, which explains how I came to work on this topic. It includes an overview of the research problems and the thesis objectives. Chapter two is a literature review of the therapeutic environment as it relates to arts-based programs and persons with dementia. In this chapter I review current arts-based programs, such as music and art therapies, while looking for relevant information on dementia care that are relevant to my creative expression program. The review is designed to identify the strengths and weaknesses of each program type, in relation to creative expression abilities and the therapeutic environment. Chapter three, methods, explains the rationale behind the selection of a/r/tography as a method for data collection for this inquiry. It includes a thoughtful consideration of the ethical issues of doing research with this vulnerable population. It provides background information on the selected sites and the participants. In this chapter I discuss techniques such as interviewing, filming, and conducting the program on creative expression activities in collecting data. To analyze the data collected I used color coding throughout the textual material to identify themes and patterns. At the end of the chapter I include a transcript of one of the 27 videos that were taken as an example, where, again, I used color coding for analysis. Chapter four, understandings arrived at, discusses the themes that emerged from the inquiry and applies the design principles to existing conditions at the two facilities as I change the furniture arrangements and document them in writing, drafting and photographing. At the end of this chapter I propose architectural resolutions for the two sites, some of which have already been implemented at the L’Chaim Centre. Chapter five is a discussion that reflects my understanding of the themes and the application of understandings to dementia, creative expression activities and the therapeutic environment. Issues raised are examined from an a/r/tography perspective as I apply my multiple roles as facilitator/architect/artist/educator and researcher. The chapter includes suggestions for further research. The epilogue returns to the personal note on which I began the dissertation, with my design for stained- glass connecting doors at the L’Chaim Centre as my gift in gratitude for the love and care the staff and participants showered on me. Foreshadowing I was born into a family of Holocaust survivors. I can count my family members on one hand. Only one uncle out of many uncles and aunts who lost their lives in the war remain alive to day. It took years to realize that my family situation was not what would be considered a normal functioning family. Nevertheless, both of my parents were very creative people and it showed in the way my mother taught her students, in her lesson preparation, class decoration, in the way she was dressed and how she made my dress-up costumes. My father was one of the last carpenters of his era who could still decorate his handmade furniture with traditional wood inlay. As a child I would spend hours in my father’s shop watching the dance of creation. I can still smell the glue, the varnishes, hear the screaming sound of the saw, the hurried instruction of my father to his intern, and the calls ofjoy or disappointment as the work progressed. I think my father appreciated my fascination with his work. Years later, after I decided to continue my studies in architecture, he offered his small manufacturing space to me as he was thinking about retirement. We both knew deep in our hearts it was not a realistic move at that time of my life. Just before he closed his shop forever, he helped me build a chair that I designed for a school project I would later take back to Bezalel, a unique school of art and design that followed the Bauhaus tradition. The school was established by designers who fled Germany at the onset of the war in Europe, and were later joined by survivors of the war. Throughout my childhood I ached for grandparents, who did not survive and the sight of older people embracing their grandchildren would pierce my heart with jealousy. 1 And so the Holocaust, with its taxing issues of life and death and the lack of extended family, has been an invisible extension of self and an active partner in shaping my experiences as I went through life. From an early age I was encouraged artistically and my efforts always met with great enthusiasm and approval. Looking back, trying to understand those rare moments of happiness with my mother as we painted or sewed together, I can see the early foundation for my skills in communicating with seniors with dementia. As I grew up, high school was my first encounter with formal education in the design world. The more the situation at home and the relationship with my mother grew complicated, the more I turned to the creative aspect of my studies. I loved those moments of searching for the best space solution, the most suitable colour and discovering the most appropriate materials and techniques to resolve design problems. It took years to realize that there were multiple approaches to design problems and that many of those solutions were equally valid. After high school I served for three years as a draft person in the naval headquarters in Israel. Once more, as the country struggled to sustain itself, issues of life and death re-emerged from my childhood. I experienced war after war until the day I moved to Canada and even afterwards, I was caught up in wars during visits to Israel. The memories of past persecutions and present violence intermingled in a mad, frenzied dance, threatening to destroy the passion to create. My mother told me that even in the most difficult times during the war, people still tried to write or paint (if they could find paper and pencil or walls). They felt a desperate need to leave something of themselves for the next generation. These paintings were intended to serve as documents recording present events. They were the shortest and most economical way to describe the horrors of the war. After my service in the navy I applied to an academy of art and design in the jewellery program, but that program was already full. Instead I was accepted into the program on industrial and environmental design. There I found myself designing such products as furniture, cars, pleasure boat interiors, cutlery, tents, playgrounds and hospital equipment. In my fourth year I met my Canadian husband, who came on a student exchange program from the University of British Columbia (UBC). I followed him to Vancouver. I left my country, my family, and a potentially brilliant career in architecture and substituted it with years of cultural struggle, language difficulties, being misread and misunderstood. I was uprooted into the unknown and the unfamiliar. Having to learn everything from scratch, the confidence I worked so hard to build gave way to feelings of insecurity and self-doubt. And so, to escape the disappointments and harsh reality, I went back to school to immerse myself in the world of design. I deliberately selected a research topic from a local situation to help integrate my efforts as quickly as possible into this new environment and its people. Although integration was a priority, my struggle to maintain my own identity continued. After graduating from UBC with a master’s degree in architecture, I joined my husband in running our architectural office and raising our two daughters, now age 18 and 26. About 7 years ago I was introduced to a wonderful old lady in a long-term care facility who suffered from dementia. I had no knowledge as to how dementia manifested itself behaviourally or biologically. It was like stepping into a different worLd; once more having to learn the medical jargon of health service providers, the terms of social work, of cognitive impairment and the issues of aging. Now, in the midst of my latest endeavour, I am trying to understand, in depth, the world of people who suffer from dementia. Long before the decision was made to go back to the academic world, I was intrigued by a new world I had entered four years earlier: the world of seniors with dementia in a long-term care facility. Nothing in my 50 years of living prepared me for this complicated experience. In my youth, I was not exposed to many old people and even less exposed to older people with dementia. 2 I started as a volunteer in a care facility spending time with Ruth, who was 86 years old, frail and suffering from early dementia. Her health was deteriorating fast. With my limited knowledge I tried to alleviate the situation and faced many unanswered questions. It did not take long to realize that something special was happening to me. I needed to understand what was going on. And that is precisely the focus of qualitative research: it is the quest to understand what is going on in the world of a specific individual or group of people, to make sense of it and perhaps turn that new understanding into action, depending on the goals set by the various parties involved in the research. In searching for answers to Ruth’s deteriorating health, I learned that nothing could cure her; we could only make the best of the situation with whatever activities Ruth could still manage. At that moment I went back to school to see what else I could do for Ruth and people like her. Ruth died a year later as have many others I worked with. I knew right from the start that understanding seniors with dementia and their abilities for creative expression would not be enough for me. I wanted my direct interaction with them to be meaningful and bring new knowledge that would benefit all of the stakeholders involved. I needed a way to record the new information so it would not be lost or forgotten. I was looking for ways to make sense of my observations, a system that would allow me to go back to it and access specific information, to explore individuals at different stages of the dementia, events, activities, architectural spaces and myself as a researcher/artist/facilitator! educator and watch if concepts, patterns or any new information would emerge from all the data collected. Although contradicting each other at times, order and a fair tolerance for ambiguity are important to my style of work. Before beginning my doctoral studies, the direction for my inquiry was based on common sense, my acquired knowledge and my own analytical way of problem solving. The desire to understand what was going on by being directly involved with those who use spaces within dementia care facilities has ultimately guided my inquiry. Overview of the Research Problem The aging population in Canada will peak between 2025 and 2045 when the Baby Boom generation reaches 75+ years of age (Health Canada, March, 2001). Significant pressure will be brought to bear on the healthcare system and on support services for older people. Various levels of care facilities are expected to experience higher demand for their services. According to Health Canada, one of every four persons over the age of 80 will have some form of cognitive impairment. These pressures may threaten the quality of services to seniors with dementia in the future. Today, most services are geared to serve basic needs, while existing quality of life programs, such as those based on creative self-expression, have never really reached their potential. The consensus among researchers is that creativity enhances the quality of life at every stage in human development from cradle to grave (Runco and Richards, 1997, Harbet and Ginsberg, 1990 and Holden, 1995). Runco and Richards, who support the idea of everyday creativity, say that creativity manifests itself in being curious, in an ongoing process of self-evaluation and personal growth. If we accept the premise that creativity improves psychological health (Robbins, 1994) and contributes to the empowerment process (Cox & Parson, 1993), the ultimate goal is to enable persons with dementia to maintain and enhance the quality of their lives and to use their remaining abilities to express themselves. This study aims to explore the physical environment in arriving at an understanding of the administration of and level of success of creative expression programs in two adult daycare centres. It is based on qualitative methods of data collection. I am interested in the circumstances that enhance or limit the seniors’ ability to express themselves creatively. Understanding the physical, cognitive and social abilities of this population helps establish the foundation for strategies that can manifest themselves in the shape and form of the physical environment. The physical envelope that surrounds the seniors, spiritually, emotionally and physically, embodies the reflection of the seniors’ world whether at home, in a residential setting or in institutional care. This envelope has the potential to create a therapeutic environment that fits with one of my long-term goals: To provide opportunities for creative expression 3 activities with educational components that are supported with appropriate architectural planning and design. Research Questions The following questions explore two main themes that focus on the environment and human behaviour. They cover the built environment, the facilitator/artist, the creative expression abilities of seniors with dementia and the intervention of creative expression activities. 1. How does the physical setting support, stimulate or hinder the learning environment for seniors with dementia to express their creative abilities? 2. As an alr/tographer, how does this study influence my perception of educational learning environments when working with seniors with dementia? Objectives The goal of this inquiry is to investigate the physical environment, how it helps or hinders arts activities and how the space is being used by the participants. In addition, we investigated how the facilitator’s approach affects the creative expression abilities of seniors with dementia selected specifically for this project. That approach includes an investigation through the lens of alr/tography where the facilitator participates and documents the seniors’ activities from the point of view of artist, researcher and educator. The results of this inquiry may lead to the following desired outcomes: (1) To encourage persons with dementia to have a sense of personal control as long as possible; (2) to help health service providers, formal and informal caregivers, understand the importance of the arts in maintaining quality of life and as a tool for communication; (3) to offer an additional assessment tool to help understand the manifestation of neuropsychological problems that arise from dementia in a variety of functional domains; (4) to provide concrete information for management in making decisions about facility programs to show that creative activities benefit the seniors, the staff and the overall operation of care; (5) to help management in making decisions about facility renovation or new construction to include appropriate spaces for creative expression activities; and (6) to explore applications in other situations where cognitive and physical abilities may be impaired. 4 Understanding concepts and definitions through literature review of: • Creativity • Expression • Creative Expression • Therapeutic Environment Forming the conceptual framework • Creative Expression Activities to be explored in: Understanding eminent creativity as it expands to include everyday creativity Understanding everyday creativity as it expands to include creativity and aging 4, Identifying the gap of knowledge 4. Understanding key issues in everyday creativity, aging, and dementia as it expands to include the therapeutic environment 4, Data collection and analysis using a/r/tography and participatory action research methods 4, Implementing changes to the environment, reviewing feedback from participants Figure 1: Overview of Thesis 5 CHAPTER II: LITERATURE REVIEW This chapter considers the literature about the therapeutic environment as it relates to current art- based programs for seniors with dementia, such as music therapy, art therapy, the performing arts, reminiscence therapy,, life review, life reflection and storytelling. At the end of each program outline, I review the literature about the type of therapy as it relates to the therapeutic environment. In the next section of this review I explore the meaning of everyday creativity and how seniors with dementia experience it, with reference to the physiological changes and cognitive changes associated with aging and dementia. The Therapeutic Environment A literature review of 20 references dealing with issues in the therapeutic environment in special care units revealed a complete lack of information regarding space design for creative expression activities in long term care facilities for seniors with dementia. As a result, there are no scientifically tested situations to learn from. However, there is a rich source of information on the institutional therapeutic environment. From this source we may be able to extract general design principles and apply them to space design for people with dementia while engaged in creative expression activities. See Lawton & Nahemow, 1973, Lawton, Fulcomer & Kieban 1984, Lawton, Weisman, Sloane, Calkins, 1997, Lawton 2001, Zeisel 1999, Cohen & Weisman 1991, Cohen & Day 2000, Day, Carreon & Stump 2000 and Amabile 1990. By asking what role the physical environment plays in creative expression activities for seniors with dementia, I look to the desired outcomes I aim to achieve in. linking the environment with the behaviour of these seniors (Lawton, 2001). I will not know the impact of the environment until I carry out tests engaging participants in various experimental conditions of the environment, observe their reactions, and interview a range of stakeholders including the seniors themselves (Lawton, 2001). The physical environment provides a mirror image of the physical and cognitive needs of seniors with dementia. Ideally, the physical environment is the final step in a long process of planning and designing a space, a place and/or an atmosphere. In this review, I have considered the physiological and cognitive changes associated with aging and dementia with references that link them to creative expression abilities of seniors with dementia and to environmental considerations. Those references will assist later in the formulation of a theoretical approach to space design for these seniors as they engage in creative expression activities. Four different studies describe the role of the environment and its impact on the behaviour of different groups of people: Amabile (1990) on creativity and a normal population in the workplace, Lawton and Nahemow (1973) on older persons, Zeisel (1999) on Alzheimer’s patients and McNiff (1988) on the concept of a “studio” as a space that inspires artistic activity. In her article on Motivation and Personal Histories (1990), Amabile found that ranking first in her interviews was the need for “Qualities of environments that promote creativity” (p. 71). When assessing environments for older adults with reduced competence, Lawton and Nahemow (1973) argued that the lower the competence of an aging person, the greater the negative impact of the environment, and the more likely it was to result in maladaptive behaviour. They quoted Murray (1938) who stated that the “forces in the environment that together with an individual need evoke a response” and named these forces “the environmental press” (p. 3). Zeisel’s (1999) article on Life-quality Alzheimer care in assisted living describes well the importance of the therapeutic environment for seniors with dementia. Zeisel identifies eight design characteristics: exit control, walking paths, personal places, social places, healing gardens, residential features, independence and sensory comprehensibility. He lists eight organizational criteria: personhood, purpose, adaptability, staff suitability, life richness, family responsiveness, real woridness and responsibility. When the criteria and design characteristics interact, they form the basis for 6 a positive and therapeutic environment. Although there are references to the need for meaningful activities, no description or space criteria are provided. The literature review did not deal in-depth with the therapeutic environment because there were so few sources. However, Cohen and Weisman (1991) in their discussion of institutional environments, specifically in a special care unit, did outline five design principles for a therapeutic environment. They report that non-therapeutic environments “can result in frustration and disruptive behavior” (p. 74). They may also affect policies and programs. Cohen and Weisman recommend: Principle 1: clusters of small activity spaces Principle 2: opportunities for meaningful wandering Principle 3: positive outdoor spaces Principle 4 other living things Principle 5 spaces from public to private realms I will return to these principles and consider them at length in evaluating the work of this inquiry. In addition, I intend to consider these further elements that Cohen and Weisman (1991, p. 65- 89) recommended to minimize the negative impact of institutional settings on seniors with dementia, when they asked that the therapeutic environment allow for: • regulated stimulation and challenges • autonomy and control • ties to the healthy and familiar • functional ability through meaningful activity • safety and security • orientation to space and time • wandering treated as an opportunity • social contact • opportunities for privacy These elements are discussed in detail in Chapter 4 in connection with the drawings related to understandings based on physical changes to the environment. Current Arts-Based Programs The use of arts-based programs, as therapeutic interventions, is a relatively new concept and is still evolving. This concept was developed by Shaun McNiff (1992) in his book Art as Medicine: Creating Therapy of the Imagination. In it he introduced the concept of “multi-arts experimentations” (p. 23). This approach to arts therapy is based on his work going back to the ‘70s. Of all the publications reviewed for this paper on various arts-based programs, McNiffs philosophical approach to arts therapy offers the closest definition of this topic: Art as medicine embraces life as its subject matter, and separations among the arts are countratherapeutic. As I work with individuals, Jam open to their poetic speech, stories, body movements, dramatic enactments, sounds, and other expressions as well as to the pictures they paint. I try to establish contact with as many aspects ofthe person’s presence as possible. (p. 22) ... Art itselfbenefits from a community ofcreation that involves different artforms and incites imagination through diversity. (p. 24) To identify and describe these current arts-based programs, I conducted a literature review. The selected programs were based on the parameters established in the revised definition of “everyday creativity” that was formulated in Question One and on McNiffs approach to creative expression therapies. These programs include: music therapy, occupational therapy, art therapy, the performing arts; 7 drama, dance/movement and storytelling therapies, reminiscence therapy and life review and poetry writing, and they are the ones in use with elderly persons with “dementia”. Dementia is the term most often used to define this population of cognitive and physical impairments; it is my area of interest and therefore was used as a keyword in this search through the literature. This review focuses on current art- based programs with brief references to historical developments in order to clarify current points of view or a specific approach to the arts in health care. The review covered relevant literature published between 1995 and 2004, including some articles published as early as 1985, to identify the arts-based programs and the physical environment the programs operate in, mainly in long-term care facilities, adult day-care programs and recreational centres for seniors. Although some aspects are extremely important — such as race and gender, medical models of care, social and economic status of residents and their families — they are not covered by this review. The initial intention in this literature review was to focus on qualitative studies. However, the majority of the studies found were based on quantitative research carried out in the field of health care, mainly by psychologists or scholars in the arts. Therefore, both quantitative and qualitative approaches had to be considered for their relevance. Relevant literature on the topic was analyzed for its applicability of theoretical, methodological and practical approaches with some attention to the size of the samples, to the criteria for subjects’ selection, the measurement technique used, how the data was collected and analyzed, whether the findings could be replicated in another location with other subjects (reliability) and whether the findings answered the research question posed (validity). Learning what techniques other researchers used or didn’t use helped me form my approach and understanding about how to proceed with the inquiry. I did find out that no matter what methodology was used, almost all researchers mentioned the difficulties in doing behavioural science research in dementia, and the sensitivity and flexibility that needed to be exercised. In the selection of literature I was not concerned with what quantitative research would see as failing to answer all the requirements of scientifically rigorous research. I was more concern to learn about the approach and the reasons for selecting it. As in the arts, each situation is unique created by people who have their own stories to tell, which are influenced by their various abilities to express themselves creatively. And although the situation may not meet the standards of quantitative research may provide parts to the puzzle of how to use the arts in the service of health care for the benefit of the people, especially seniors with early to moderate dementia. Definition of Dementia Dementia refers to the development ofmultiple cognitive or intellectual deficits that involve memory impairment ofnew or previously learned information and one or more ofthe following disturbances: 1. Aphasia, or language disturbances. 2. Apraxia, or impairment in carrying out skilled motor activities despite intact motorfunction. 3. Agnosia, or deficits in recognizing familiar persons or objects despite intact sensoryfunction. 4. Executive dysfunction, or impairment in planning, initiating, organizing, and abstract reasoning. (Agronin, 2004, p. 2- 3, as published in “The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) Dementia is divided into seven subtypes that include over 72 brain diseases. Although, new medicines have been introduced to alter the progression of the condition, a cure has not yet been found (Agronin 2004). While the search goes on, people with dementia are in need of special care and constant supervision wherever they reside, whether at home or in long-term care facilities. 8 / (1999) _________ SternbergetaL Gardner (1982) • PsychometricNeuropsychological Creativity • Experimental < ‘) \approach based on Research Biographical < i • Biological inguistics • Contextual E— / • Artificial Behavioural • Product perspective • Process • Biology research ‘ Press • Clinical research • Cognitive research Eminent creatMty to • Developmental everyday creativity research • Economic factors ÷ _ __ _ __ theories • Psychometric research • Social research Figure 2: Selected Approaches to Creativity Research Definition of Everyday Creativity I have proposed this definition of everyday creativity: Creativity in the context of dementia adds something new and different to the world whether through intrinsic self-exploration as an individual, or sharing creative expression through interaction with others. The creative process is demonstrated through creative thinking and imagination in everyday living and may or may not result in a product. Through creativity, people with dementia could (can) enjoy meaningful, satisfying and (at times) unpredictable experiences that may last for only a very short while or as long as memory allows it. This review focuses on arts-based activities programs and the physical environments they take place in. Both aspects are addressed through theoretical and practical perspectives, which are tightly Creativity versus no creativity Csikszentmihayi (1999) • Added — Public recognition and acceptance Creativity versus no creativity Runco (2004) • Person Runco (2004) 9 intertwined. In the theoretical approach I was wondering whether I had the appropriate tools (quantitative) and observations (qualitative) to measure or observe changes in mood and behaviour of people with dementia. Which of the interventions are most effective in producing positive changes in the quality of life of people with dementia? How do we define positive changes, by whose standards? Would pleasures of the moment count as positive changes, although short lived? Are the people with dementia to be included in self-reporting and interviews? Can they or should they be included in the various stages of the research process? The last question is of major interest, since it leads to important ethical issues of giving consent. Another interesting question is whether or not arts-based programs play a role in slowing down the symptoms of dementia and therefore may be essential for individuals of normal aging to be engaged in. This question is being addressed now in the field of dementia research and there is a definite trend to pay attention to the arts in the service of health care more carefully. In addition I ask whether or not the physical environment matters? Could it be that a very capable arts-based facilitator can overcome less favorable environmental conditions and still achieve positive changes working with seniors with dementia? In short, does the physical environment really matter? Arts-based Programs in Dementia Care: The Literature on Special Care Units (SCU) versus Non-special Care Units (non-SCU) Arts-based programs in dementia care are often listed in the literature as one activity out of many others ranging from bath-taking or laundry-folding to drawing. Many times programs that are referred to are medical care programs, or government initiated programs that have nothing to do with artistic pursuits. The terminology used by various health care providers is at times confusing. While expecting to read infonnation on arts-based activities, I was surprised to learn that arts-based activities were many times lumped together with activities that have nothing to do with the arts. To find information on arts- based programs for the elderly with cognitive and physical impairments, mainly in dementia care, the review was expanded to studies on special care units as they are compared to non-special care units in long-term care facilities. Special care units are believed to be environmentally safer than non-special care units for seniors with dementia and provide activity programs more suitable to the needs of confused and wandering elderly people with dementia. While there is an agreement on the safety issue, there are disagreements on the quality and benefits of arts programs provided in special care units. The Office of Technology Assessment’s (OTA) 1992 study, Activities in Special Care Units (SCU), included: “singing, dancing, exercises, painting, crafts, games, parties, pet therapy, field trips, reality orientation, sensory and cognitive stimulation, reminiscence therapy, religious services, housekeeping, cooking, gardening, and sheltered workshop activities” (p. 95) OTA reports that the lack of appropriate activities is a frequent complaint in nursing homes. At the time of the report, OTA was not “aware of other available data on the proportion of special care units that provide particular types of activity programs” (p. 96) One of the descriptive studies reviewed by the OTA’s report in 1992 was an early study conducted in 1985-1986 by Weiner and Reingold and published in 1989. This study found that physical exercise and music therapy were the activities most used in the 22 SCUs they surveyed and in specialized programs in other settings, followed by reality orientation and sensory stimulation. In a study of 31 SCUs carried out by the University ofNorth Carolina and reviewed by OTA, both SCUs and non-SCUs provided almost the same activity programs for their residents. Studies, such as Leon et a!. (1997), OTA, (1992), Lawton (2001), where activity programs are mentioned, provide no details as to the structure of the activities, the philosophical approach, or way of implementation. A study by Itkin Zimmerman, Sloane, Gruber-Baldini, Calkins, Leon, Magaziner, & Hebel (1997), on various philosophical principles that drive special care in SCUs, identified “activities that are specifically designed for cognitive impaired” (p. 171) but no details were provided as to the specific characteristics of the various activities. However, Itkin Zimmerman et al. (1997) did identify the need to support.self-expression and “a right to dignified care and appropriate 10 mental and physical stimulation” (p. 176). Again, no descriptions are provided as to what constitutes appropriate mental and physical stimulation. In Sloane, Mitchell, Weisman, Zimmerman, Foley & Long (1995), researchers were advised to describe the characteristics of the SCU with care, including a description of program activities. In the 1999 revised publication Guidelinesfor Care by the Alzheimer Society of Canada, there is a short section on meaningful programs and activities, which emphasizes the theoretical aspect and the philosophical approach appropriate for a person with Alzheimer’s disease. However, no details are provided for the kind of activities or their implementation. In a review paper by Gloria Gutman (1999), on the physical environment and Alzheimer’s care, she points out that “various authors recommended that care facilities, through environmental design and programmed activities, provide opportunities for people to ‘burn-off excess energy” (p. 17). The paper recommends several physical solutions such as wandering paths, loops and tracks in indoor and/or outdoor space. However, no details are given as to the kind of programmed activities for people with dementia and their implementation. In Gerdner and Beck’s (2001) survey of SCUs and non-SCUs in Arkansas, it was found that “the types of activities provided in SCUs and non-SCUs did not differ significantly” (p. 293). Examples of activities included: aromatherapy, social functions, simple exercises, beach ball toss, children and volunteer visits, church, and sing-a-long. The survey described the state’s proposed regulations calling for programs that “encompass gross motor, self-care, social, and sensory-enhancement activities” (p. 293). However, no references were made to the structure of the activities or the implementation. In Marian Deutschman’s article (2001) on quality of care in nursing homes, she emphasizes the importance of “search for breakthrough projects” (p. 35) that may produce “options, opportunities, and learning” (p. 35). She mentioned a facility that introduced 12-hour activity programming in its SCU. No further details were given of the kind of programs involved. In Grant, Kane and Stark’s articLe (1995), based on a telephone survey of 436 nursing homes in Minnesota, 31 program features were identified in SCUs and non-SCUs. Grant et al. (1995) found that SCUs were more likely than non-SCUs to use: outdoor activities, large motor skill activities, shortened or simphfled activities, music therapy, art therapy, ordinary task activities, intensive structured programs, programs using special activities staff occupational therapy, small group activities, pet therapy, spiritual activities, and sundowning programs. Non-SCUs were more likely than SCUs to use reality orientation and one-on-one activities. (p. 572) In addition to comparing these features, Grant, Kane and Stark (1995) concluded that music therapy was the only program used by a majority of SCUs (55%). They broke down some of the programs into further descriptions, for example: large motor skill activities were broken into balloon ball, balloon volleyball, rolling balls or ring toss. Ordinary task activities included cooking, baking, washing tables, cutting coupons, folding linen or mending clothing. Intensive structured programs included scheduling a greater number of activity programs on the unit at shorter intervals. Special activities staff included psychologists or other specially trained activities staff. The most important finding was that many non-SCUs use similar approaches to SCUs in staff training, environmental design and programming, which could mean that “some SCUs offer rather meager specialized features beyond whatever advantages are achieved by a homogeneous population” (p. 575). Although more detailed information is provided in this article regarding the various features of the various activities, no description of implementing the activities is provided. In Kuhn, Kasayka and Lechner’s article (2002), they make behavioural observations and comment on the quality of life of 131 persons with dementia in 10 assisted living facilities in a Midwestern state in the U.S. Kuhn et al. examine “the types of interactions and activities taking place among residents and staff on a given day”. He notes “the lack of purposeful activity . . .“(p. 291) for residents in LTC facilities and the need for structured activities. Kuhn, Kasayka and Lechner compare smaller facilities that are specifically planned for dementia care to larger facilities that are not dementia specific. This study found 11 that people with dementia in larger facilities interacted less with other residents or staff, while in smaller facilities, residents were more interactive. The study found that “there were generally few structured activities in which residents engaged apart from eating and drinking” (p. 297). In all the 10 facilities in the study it also found “a lack of diversity in terms of activities engaged in by residents” (p. 297). In the 24 categories of behaviour, the study included a category for expression that was explained as “Engaging in creative activity” (p. 294). In the breakdown of the time spent by the residents on various activities, “engaging in expressive or creative activity (code E)” (p. 295) was observed 4 percent of the time. Kuhn, Kasayka and Lechner (2002) suggested that activities in the smaller dementia-specific sites “were not appropriate to their (the residents) level of need” (p. 297). No definition was provided as to what constitutes creative behaviour. However, other categories offered in the list could have been classified as creative activities if the definition of creativity was clear. Creativity has the potential to manifest itself in other activities that were mentioned in Kuhn’s observation such as: participating in a game, craft, intellectual activities and being engaged with media. Again, with no descriptions, definitions or examples as to how each behaviour manifests itself, it is difficult to determine whether or not creative behaviour was present and observed. In Chappell and Reid’s empirical study (2000) on dementia care in SCUs and non-SCUs, residents’ activities are mentioned as resident-relevant activities or individualized care planning and are considered as one of the “dimensions of care” (p. S23 5) important to quality of care practices. Chappell and Reid mentioned studies that included the importance of activities in their review of articles written by Morgan & Stewart, 1997, Grant & Potthoff, 1997 Anderson, Hobson, Steiner, & Rodel, 1992. A quote from Grant & Potthoffs in Chappell and Reid’s article expresses the frustration of documenting residents’ activities and overall, perhaps, the reason for the lack of detailed activities in the literature. “The specific type of activities that should be encouraged is difficult to document, and certain activities may be more suited to residents of SCUs and others better suited to residents of non-SCUs” (Grant & Potthoff, 1997, p. S236). Chappell and Reid did not elaborate on resident-relevant activities. They explained that the data collected on this dimension was limited and therefore did not allow “the development of extensive categories for this dimension” (p. S238). Chappell and Reid question the efficacy of SCUs in comparison to non-SCUs. They concluded that SCUs and non-SCUs are similar in care implementations and suggest that “SCUs are not homogenous and do not necessarily provide better care than non-SCUs” (p. S234). In a study by Phillips, Sloane, Hawes, Koch, Han, Spry, Dunterman and Williams (1997), it was found that “no statistically significant difference was observed in the speed of decline for residents in SCUs and traditional units in any of the 9 outcomes” (p. 1340). This study’s view came from a medical model emphasizing bodily functions such as, transferring, toileting, eating, walking, dressing, activities of daily living, bowel continence, urinary continence and weight loss. No other activities were mentioned. A study conducted in Finland in 1998 by Ulla, Johanna & Raimo, on the effect of respite care of people with dementia in SCUs, concluded that no deterioration of cognitive functions or mood were observed as a result of the respite care and that “rehabilitation of demented patients seems to be possible to some extent” (p. 224). Activity programming is included in the features mentioned, which contribute to positive outcomes. However, some activities were mentioned indirectly for possible opportunities such as shopping, visiting a coffee place, restaurants, museums, galleries, kitchen activities, cooking and baking, gardening and outdoor activities, as well as dancing, singing and reminiscence. The study by Ulla, Johanna & Raimo (1998) has a different philosophical approach to care than the previous studies mentioned in this review that advocated for structured activities. Ulla, Johanna & Raimo see a limited rehabilitation potential by providing an “atmosphere of approval, success and confidence” (p. 227) and by not providing structured activities at a specific time that could contribute to agitation. They found a 24- hour supportive atmosphere that “came from the ways of living normal every-day life” (p. 227) was more effective. This study did not support patients being “pushed throughout the day according to rules and schedules” (p. 227). No details were provided as to how the activities were integrated into the daily life of the patients. 12 A non-comparative study by Bober, McLellan, McBee and Westreich (2002) focuses on group therapy programs in SCUs, led by a social work philosophy to person-centred dementia care, presented a more developed practical and conceptual framework for art-based activities. This study responds to a gap in the literature regarding group work with people with dementia. The program, The Feelings Art Group, was developed “as a stimulus for uncommunicative emotions.” It exposed its participants “to a variety of sensory stimuli and artistic activities on a series of universal topics including family, work, music, spirituality, nature, holidays, seasons, and end of life issues utilizing visual, audio, tactile, and olfactory stimulation” (p. 74). The article goes into a detailed explanation of the theoretical and practical approaches to the program. This is a clear change from previous studies, which touched upon the topics of activities in SCUs but did not explore them in depth. This qualitative study presents case studies and quotes participants to demonstrate their remaining abilities. Bober, McLellan, McBee and Westreich. (2002) believe that this model of group work could be replicated in other settings. However, at the time of submission, no replication trials had been undertaken. Bober et al. (2002) stated that “Clinicians, with the support of researchers, need to explore the efficacy of both individual and group interventions with this population in order to provide the best possible care” (p. 84). While the latter approach to art-based activities shows flexible and sensitive understanding of the cognitive abilities of the participants and tries to minimize a sense of failure, the next study of Seifert (2000) adopts a research approach reminiscent of a scientific medical approach, which emphasizes the process of data collection with less sensitivity to the participant’s own needs. This is a case study of one individual with dementia who expressed a desire to restore a family heirloom. Although the researcher warns others about the complexity and frustration that was attached to the project, she still went ahead with the consent of the family and the participant to conduct this study. She also suggests the use of a psychologist, psychiatrist, or other professionals from related mental health field. The art project is presented in detail, down to the materials and painting technique. The replication of this study would depend on a researcher’s comfort level exposing participants to potential failure. The following study is a valuable review and critique of 33 studies conducted by Marshall and Hutchinson (2001) on the use of activities with persons with Alzheimer’s disease (AD). They open the topic by discussing the difficulties in doing research with this population and sum up the current state of research on activities engaging people with dementia. The study concludes that although “researchers have demonstrated interest in the use of activities with persons with AD, theoretical and methodological difficulties, unclear findings and gaps exist ...“ (p. 488). The review, based on the work of about 20 researchers, concluded that activities are valuable to self-esteem, sense of accomplishment, socialization, communication and pleasure. In several places, Marshall and Hutchinson also point out that “To date the knowledge, we have about the use of activities with persons with AD is minimal and fragmented” (p. 489). From their own review they found that: many researchers did not identify a theoreticalframework that influenced their decision about choice ofan activity, and how they used the activity. Rather, researchers alluded to a theoretical rationale or embryonic framework ... Theoretical models did not guide the majority ofstudies reviewed and were used with varying degrees ofclarity and integration. Theory was never tested in the research, but was used to provide a theoretical perspective. (p. 490) In breaking down the types of activities used in the 33 studies, Marshall and Hutchinson found that music was “the activity of choice” (p. 493). “Music was used alone in 16 studies and was combined with other activities in seven studies” (p. 493). Marshall and Hutchinson’s review goes on to discuss methodology. The literature review on arts-based programs in SCUs versus non-SCUs did not produce detailed studies that adequately described arts-based programs and the physical envirOnments they occur in. It is not clear as to why there is such a gap of information. Perhaps there are practical reasons that could explain the lack of detail, although most of the studies acknowledged the importance of arts-based 13 programs. The lack of detail may have to do with the researchers’ professional background and training. Many of them come from fields of psychology, social work, gerontology, medicine and nursing, and unless they have a personal interest in the arts or have been trained in the arts, they seem to ignore the research that may provide further detailed information regarding arts-based programs. However, in the absence of detailed information on arts-based programs for people with early to moderate dementia in the literature reviewed so far, I will further examine individual areas of arts-based therapies such as music therapy, occupational therapy, art therapy, the performing arts; drama, dance/movement and storytelling therapies, reminiscence therapy and life review and poetry writing, Music Therapy Music as an intervention that contributes to mood changes is not a new phenomenon. “It has been used throughout history as a healing force to alleviate illness and distress” (Bunt, 1994, p. 2). Leslie Bunt, a qualified therapist, Director of The MusicSpace Trust and Research Fellow in Child and Mental Health at the University of Bristol in the UK, gives an historical overview on the changes in the development of music therapy as a profession. It started as an intervention with mentally challenged adults and with adults suffering from psychiatric problems, especially schizophrenia. According to her analysis, current music therapy has its roots at the beginning of the twentieth century when hospitals invited musicians to entertain mentally ill patients to relieve mental stress. During World War II music therapy experienced a significant growth and, although it was employed by the medical profession, it always was accused of a lack of rigor and systematic research to validate the influences music can bring about. The profession responded to the scientific call and in 1992, the Music Therapy for Older Americans Act was signed. This act gave public recognition to the power of music to increase cognitive and psycho social functioning and well-being in areas of working with children with learning and physical disabilities, with children and adults with visual and hearing impairments, with offenders, with AIDS and HIV patients, with hospice and cancer patients and with sexually abused people. Music therapy also provides services to older people in long-term care facilities and in hospitals (Bunt, 1994). In her historical review of the profession, Bunt (1994) brought forward seven different variations on definitions of music therapies. Her own definition includes many aspects of what music therapy is about: “Music therapy is the use of sounds and music within an evolving relationship between client and therapist to support and encourage physical, mental, social and emotional well-being” (p. 8). In their articles, researchers like Bunt (1994), Butterfield Whitcomb (1994), Mathews, Clair and Kosloski (2000), Kneafsey (1997), Aidridge (1993) and Chavin (2002) state that music therapy allows therapists to observe and assess a range of abilities and behavioral aspects of their clients. In a case study Bunt described ten different elements affecting behaviour and ability that form the theoretical basis of music therapy: the ability to observe physical movement, organization of time and space, manipulation of instruments, making vocal sounds as a response to musical stimuli, level of attention and concentration, social skills, self expression, feelings, communication and the level of motivation. Bunt also recognizes the interdisciplinary nature of being a music therapist. She acknowledges the role of other therapy providers who contribute to a team effort in treating clients. She mentions speech therapists, psychologists, physiotherapists, occupational therapists, psychotherapists, arts therapists and social workers. Music therapy evolved into an intervention that “is not solely a means of occupying people for a short time with music as a diversionary and entertaining activity” (Bunt 1994, p. 9), but also evolved into a tool that allows assessments of cognitive and physical abilities. Within the field of music therapy, Bunt acknowledges four therapeutic models: “a medical model, psychoanalysis, behaviour therapy and humanistic psychology.” (p. 16). The last model is of a major interest here and will be described in the next section. Bunt also states that the current trend in music therapy is shifting from the medical model of patient and therapist relationships, where the therapist is in total control, towards a more balanced 14 relationship where clients have more input into their treatment or at least where the therapists become aware of the clients’ individual needs, a process which echoes the theoretical approaches of person- centered interventions in dementia care. Music therapy as it affects dementia care is considered a relatively new addition to the diverse list of applications in this field. Among the articles on music therapy and dementia care, or music therapy and Alzheimer’s of a dementia type, there are studies that explore the influences of music therapy on people with dementia. Smith-Marchese (1994) explored the effects of participatory music on reality orientation and sociability in long-term care settings; Sambandham and Schirm (1995) explored music as a trigger for memory that would contribute to better communications; Johnson, Cotman, Tasaki & Shaw (1998) tested whether listening to a Mozart piano sonata may enhance spatial-temporal reasoning in people with Alzheimer’s; Ashida (2000) explored the effects of reminiscence music therapy on depressive symptoms in elderly persons with dementia; Brotons and Koger (2000) explored the impact of music therapy on language functioning in dementia; Glynn (1992) looked into using music therapy as an assessment tool for psychological, physiological and psychosocial conditions; Aldridge (1994) explored how music could reduce the need for tranquilizing medication, which helps reduce agitation; Gotell, Brown & Echman. (2002) looked into how background music may impact bathing activity, which is known to create stressful times for people with dementia and their caregivers; Hope (1998) explored how music contributes to relaxation in a multisensory environment, also known as the Snoezlen intervention; Fitzgerald-Cloutier (1993) explored the use of music therapy to reduce the urge for wandering and therefore reduce the need for restraints. Strengths and Weaknesses as Music Therapy is Linked to Creative Expression Abilities and Dementia The consensus among these researchers is that music has a significant impact on people with dementia in changing moods, recalling some memories, improving communication and social skills, helping to relax, to bring enjoyment, and to get in touch with one’s own feelings. In spite of the consensus and the variety of concerns raised regarding disturbed behaviours and various levels of abilities of people with dementia, most of the researchers lack outright references to the creative expression of seniors with dementia and only on rare occasions allude to it as self-expression. Before starting the readings on music therapy, I assumed that creative expression abilities of seniors with dementia would be discussed whenever music was concerned; however, it was not so. Depending on the direction the therapy takes, the activity described may stay only in the listening mode with no purposeful planned opportunities for creative expression. Another interesting finding was that the term music intervention or music therapy is not necessarily limited to certified music therapists. Music is not restricted to one group of therapists. However, the deep understanding and commitment to provide opportunities for people with dementia to express themselves creatively was most apparent in literature produced by music therapists and not by healthcare givers, such as nurses or psychologists. I don’t exclude the possibility that some healthcare givers are quite capable of conducting interventions based on music activities. However, this realization did not come through the literature on this topic. As the reading progressed I realized that selecting articles based on their titles caused confusion since the terminology used by various healthcare givers was not always the same terminology used by various arts therapists. For instance, the word program or activity may refer to bathing and not necessarily to artistic activity. Some authors did make vague references to creative expression abilities or activities but failed to name them as such. Understanding that various terminologies may become a barrier to finding the bigger picture of what music therapy is about, I rearranged my approach to reading source material and looked for concepts and ideas behind the titles and even behind the written text. I started to look more carefully at case studies and arts programs as they were implemented, while looking for clues and hidden meanings that may indicate the authors’ awareness of the topic of creativity in dementia care. 15 The following sources were selected based on their deliberate inclusion of creative expression abilities or activities in music therapy: In their literature review on music and dementia, Brotons, Koger and Pickett-Cooper (1997) mentioned the positive effect music was found to have on “creative self- expression” (p. 211). No definition nor explanation of what creative self-expression means was provided. Halpern and O’Connor (2000), in their study on implicit memory (memory that creeps out after being exposed to previous experiences), refer to music in connection with Alzheimer’s disease. Instead of using the words creative expression, Halpern and O’Connor use the terminology “esthetic framework” (p. 395). Not surprisingly, Halpern and O’Connor both come from healthcare fields — psychology and behavioural neurology. They also observe that they did not find any studies that explored the ability of Alzheimer’s patients to appreciate artistic objects. In a curious observation, Chavin (2002) states that music activity may not be suitable for everyone. York (1994) attributes to music therapy intervention the ability for creative self-expression. York offers no definition for creative self-expression; however, she does mention in her quantitative study “spontaneous singing” and “musical behavior to recorded music” (p. 288). Butterfield Whitcomb (1994), in her article defending the use of music by other healthcare professionals and not only by certified music therapists makes several references to the importance of encouraging creative expression by people with dementia. In her words “Music is a temporal medium. As it unfolds in a moment to moment flow, it moves us along with it, and we respond in spontaneous and often creative ways” (p. 67). Aldridge (1993) refers to singing as “an activity correlated with certain creative productive aspects of language .. .“(p. 27). Silber and Hes (1995) in Carruth (1997) report on creative songwriting produced by patients with Alzheimer’s disease. Although a definition of creativity in these articles is missing or lacking, there is an acknowledgment of the importance of creative expression as an independent factor that has the potential to improve the quality of life of seniors with dementia. Bunt’s book on music therapy (1994) stands out in providing rich information that specifically supports activities that emphasize creative expression abilities, and her practical approach to music therapy demonstrates her deep understanding of what creativity means. In her program Bunt (1994) provides “... freedom to improvise and explore.” (p. 23) She is always ready to change direction to accommodate the needs of the people she works with. She takes account of changes moment by moment as the activity unfolds and makes sure her clients know that there is no right or wrong way to play an instrument. She points out that the arrival of her music instruments “attracts some interest and curiosity” (p. 23), which are some of the attributes that constitute creative behaviour and which were addressed in Question One. Bunt describes music-making as a “creative process” (p. 29); she supports it with Jung’s (1922) approach to creativity and quotes him: “The creation of something new is not accomplished by the intellect but by the play instinct acting from inner necessity. The creative mind plays with the object it loves” (p. 36). Bunt goes to great length in analyzing creativity, as described by Freud, Jung and others who laid some of the theoretical foundation to art therapy. Bunt bases her work on humanistic psychology, which focuses on “helping people realize their full potential ... and growth rather than treatment.” (p. 42). She also includes issues such as: Respect for individuals and their unique differences, the notion of ‘wholeness’, development of purpose and personal intentions, freedom of choice, self-growth, or self-actualization, particular in relation to others, creativity, love, peak experiences, self- esteem (p. 42). Bunt reports that after listening to music, some clients were inspired and could imagine “very rich images” (p. 70). Music has the ability to connect to our inner feelings and it “is very much beyond words, articulating inner forms beyond language” (p. 73). The structure of some music sessions are described in detail and are characterized as free floating sessions that start with listening to some music and improvising on some instruments that may lead to a discussion on various topics. She stresses the potential collaboration between music therapy and other creative arts therapies such as art, drama and dance movement. She supports the idea of creating resource centers that would include the various therapies. Although Bunt’s writing on music therapy stands out among the others in its rich material 16 supporting creative expression at all ages, it lacks in-depth analysis on creative expression and dementia. She does make brief mention of people with dementia but quickly returns to discuss children, young adults and older adults with mental illness. Although not stated explicitly, she may be linking dementia to mental illness. In another brief reference to dementia, Bunt suggests indirectly that perhaps people with dementia revert back to their childhood. This position is acknowledged in the field of gerontology and dementia care but it is not well supported. Music Therapy and the Arts Room in a Therapeutic Environment My original intention was to search for information on spaces dedicated to creative expression activities programs, especially in the articles selected for their information regarding arts programs. Surprisingly, space description was scarce, which raises questions as to why the physical environment that surrounds arts program is totally ignored. Is it because the authors felt it was not in their domain of expertise to comment on it? Was the environment so unimportant that it was not included in the scope of research, or was it simply a matter of being unaware of it? Perhaps the environment does not always play a critical role in some arts programs. Perhaps it is a reflection of the conditions many arts program facilitators and therapists work under, who have to make do with whatever space is available due to economic constraints and the prevailing attitude that the arts are expendable and that arts programs are an item of choice and not of necessity. Most studies on music therapy mention in general the location of the study such as at long-term care facilities, recreation centers, or a house in rural Spain. No other details are provided. A quote such as: “Both experimental and control conditions took place in the dining room with chairs arranged in a circle” (Olderog, Millard and Smith, 1989, p. 62), may have been mentioned since the furniture became an important factor in the dynamic that took place between the music therapist and the subjects of the study. Out of the relevant articles selected on music therapy, only two articles and their authors went into more detailed description. Mathews, Clair and Kosloski (2000) described the setting for their study in detail from the size of the day-room and living room to the various items in the rooms such as furniture, microwave, dining tables and chairs, storage cabinets, telephone and more. They described the shape of the dining table and briefly mentioned reading lights and the proximity of the dining room and living room to the nurses’ station and courtyard. Butterfield Whitcomb (1994) utilized her long time experience working with seniors with dementia and came up with several suggestions to improve the space used for music therapy. She made a number of suggestions, such as eliminating all auditory stimulation except the music that was selected, drawing the drapes, providing incandescent lighting, forming the group in a circle and paying attention to the acoustics of the environment. She also recommended small sitting rooms or even bedrooms for listening to music. The word environment carried different meaning to different authors. Authors from the field of healthcare refer at times to the environment as a symbolic representation for the ambience of a space or the atmosphere created by the people using it. The ambience is usually created by staff and occasionally by the designers hired to design those environments. Failing to find information on the arts room linked specifically to the needs of people with dementia, I turned to literature published on the therapeutic environment, especially in dementia care, that I have consulted before for other purposes. Surprisingly, well-known authors such as: Powell Lawton and Kristen Day, do not include details on the arts room in the scope of their work either, and briefly mentioned space allocations for arts activities. Occupational Therapy Stein and Cutler (2002) relate occupational therapy most closely to arts-based programs. Both authors approach occupational therapy from a holistic point of view and call it Psychosocial Occupational Therapy. Stein and Cutler consider occupational therapy to be “compatible with the Uniform Terminology for Occupational Therapy (3rd ed., 1994, p. xii)”, and define it as: 17 an applied science and rehabilitation profession concerned with enabling individuals with disabilities to reach their maximum potential in performingfunctions in daily living, employment, and leisure, through the use ofpurposeful activities. The occupational therapist’s treatment goals are to maintain, restore, and develop physical and psychological functions ... (p. xii) In a longer version of the occupational therapy definition, Stein and Cutler include creative expression and arts and crafts, among others, in the description of purposeful activities. They also refer to the environment as an important factor in assessing treatment outcomes. Occupational therapy started in the 1 800s and has its roots in treating the mentally ill in hospital settings. Today, occupational therapy is a combination of two major influences that developed in medical care. One is holistic medicine, focusing on wellness, which is based on “man’s harmony with nature” (p. 28), while the other influence is the “moral treatment” (p. 28), which “emerged as a counterbalance to the inhumane care of those with mental illness ...“ (p. 28). Stein and Cutler identified four theoretical models for treatment that are based on medicine, psychology, education and sociology. First is the psychodynamic model, which focuses on interpretation and analysis of personality and behaviour. Freud, Adler, Jung, Rogers and Erikson are mentioned as major theorists who influenced this direction. These scholars are referred to repeatedly in arts-based programs and by adopting their approaches to psychological treatment, there are bound to be some similarities in the various interventions. Those similarities will be discussed later. The second theoretical model in occupational therapy is behaviorism, which focuses on changes to thinking, behavior and environment. The third model is based on the biopsychosocial model, which relates to sequential patterns of growth. The fourth model, systems theory, is the basis for the holistic approach in occupational therapy. It is an “eclectic model that focuses on the individual’s daily occupations as a means to master the environment” (p. 114). At first glance, as Stein and Cutler laid out the theoretical foundation for their profession with references to creative expression and person-centered care, I assumed that their mandate “to maintain, restore, and develop physical and psychological functions ... “(p. xii) would change accordingly to accommodate people with dementia. However, the definition did not change and their mandate continued to carry overtones of prospective rehabilitation even in the section on dementia. Unfortunately, rehabilitation is not a reasonable consideration at present, due to the nature of the disease, which is characterized by a progressive slow decline. On the other hand, no testing was done to prove otherwise — that increased creative expression activities could halt further deterioration of the brain. Some scientists, like Remi Quirion, at McGill University and Howard Feldman at the University of British Columbia, believe that increased exposure to creative expression activities may increase new cell growth and connections among cells in the brain. Stein and Cutler also linked dementia to mental illness, although that showed poor understanding of the nature of this disease. According to Agronin (2004), dementia becomes a mental illness when it is accompanied by other psychiatric disorders such as depression, agitation and psychosis. It depends on the type of dementia and how it manifests itself. Seniors with dementia may have reduced memory but still may maintain a global intellectual function intact and in this case would not be identified as mentally ill. I suspect that if Stein and Cutler had a better insight into dementia, they would have rephrased some of their statements such as: “... occupational therapy and psychotherapy are interactive processes that rely on the client’s active participation. In this process, the client discloses personal information, identifies problems, and tries out new behaviors to cope more effectively with life tasks” (p. 188). Practitioners in dementia care know that it is extremely difficult or next to impossible to teach new information that will be remembered long enough to influence changes in behavior over time. Studies that assess clients with dementia before and after intervention (Brooker & Duce, 2000) show that changes in behavior are short lived unless the intervention is repeated. The psychosocial occupational therapy supports an interdisciplinary approach to treatment and borrows from art, dance, music, poetry, psychodrama and storytelling therapies. It is easy to criticize such a formidable effort to cover so many areas of creative expression. However, the intentions of meeting a 18 client’s needs in the area of creative expression that suits them should be applauded. The concern, then, is how capable is the occupational therapist in conducting each type of creative expression, and does it matter? When Stein and Cutler discuss art therapy they see no problem in including artwork analysis as a diagnostic tool. Reid and Chappell (2003) raise the issue of activities programs for seniors with dementia in special care units. Although they found theoretical and empirical evidence in their literature review to support the value of activities in dementia care, they recognized the importance of how these activities were implemented and whether the staff was trained and available to facilitate those activities. No details were provided about the types of programs, nor the physical environment. It is interesting to read the opinions of various scholars on each other’s field of expertise and the comparisons between them. From the literature review it is obvious that there is a sense of competition, and there is definitely confusion about the boundaries between the various programs as they grow closer and cross over. Rubin (1998), an art therapist, writes on occupational therapy: “All these fields use art as one of many possible activities, forms of recreation, or ways of being constructively occupied occupational therapy teaches task analysis — a method of breaking a task into its smallest components especially valuable for those who are neurologically impaired and/or developmentally disabled” (p. 72). Dailey (1984), also an art therapist, writes: “Art therapy is not a form of occupational therapy occupational therapy is concerned with working on a conscious level, with the aim of developing technique in making products, using methods which are really more compatible with those of teaching “(p. xxiv). Occupational Therapy and the Arts Room Although the environment was acknowledged in the definition of occupational therapy, this subject was rarely explored. Stein and Cutler’s book devoted less than one quarter of one page to it in a book of 666 pages. In the section on the environment, while three questions were addressed, only two had direct relevance to the environment — questioning whether lighting, background sound, color, temperature, atmospheric pressure, visual distractions had an affect on the treatment outcome. In contrast to the lack of attention to the physical environment — specifically the arts room in Stein and Cutler’s book — an article by Perrin (1997), a senior occupational therapist at the well-known Bradford Dementia Group, discusses the possibility that the physical and social environments may not play such an important role in the lives of people with severe dementia as “commonly imagined” (p. 940). Perrin goes on to say that for a “severely impaired person ... the environment has ‘shrunk’ to envelop him in kind of a plastic bubble, which is about 3 to 4 feet in diameter” (p. 940) and that staff have no problem interacting with this group as long as they are close physically to the clients and within the suggested ‘bubble’. Perrin brings up the notion that if the closeness encourages interaction, it may be an important factor in space design and the attention given to activities in it. To make her point clearer she writes: Maybe what is really important is not as much matching the lounge curtains to the wallpaper, as the smile on ourface as we enter the bubble; not so much the TV in the corner, as the colourful magazine we look through with the client ... (p. 940) Art Therapy J.A. Rubin (1998) in Art Therapy: An Introduction provides a brief historical overview of art therapy. Art therapy was introduced in 1914 by Margaret Naumberg, who founded a school where the arts were central. In 1920, Florence Cane, a gifted teacher in New York, discovered that “art had power to liberate not only the creativity, but also healthy psyches of” The Artist in Each of Us” (1951, p. 4). The field gained momentum when Victor Lowenfeld, “A sensitive educator, who studied the nature of creative activity by teaching sculpture to blind children” (p. 5) joined in 1939. Key therapists like Mary Huntoon, who worked with psychiatric patients in 1935, Adrian Hill, who wrote the first book on art therapy, Edith 19 Kramer, who developed a theoretical approach to art therapy working with children, all contributed to the expanding field. Many art therapists entered the field through the pathway of art education, bringing with them the understanding of child psychology. Other known artists turned therapists are Don Jones, Hanna Yaxa Kwaitkowska, Robert Ault, Arthur Robbins, known for his Expressive Analysis, Helen Landgarten and Shaun McNiff. The field of art therapy is still going through growing pains and self-examination. Some in the field believe that the creative process is the main contribution towards healing and named it “art as therapy Those who felt that art therapy’s primary value was as a means of symbolic communication sometimes called it art psychotherapy” (p. 61). Art therapy is also called: expressive analysis, clinical art therapy, psychoaesthetics or expressive therapy (p. 61). There are about 13 different approaches: 1. Psychoanalytic theory — one of many ways to try to understand how and why people function as they do. 2. Freudian Psychoanalysis and Jungian Analytical Psychology — based on an understanding of the dynamics of the patient’s internal world. 3. Humanistic approach — emphasizes the acceptance and development of individuals in the present 4. Person-Centered or Client—Centred approach — developed by Carl Rogers in England. 5. Gestalt approach, emphasizing the here-and-now — based on Gestalt Psychology, which focuses on sensation and perception. 6. Rudolf Arnheim focused on visual perception and influenced many in art therapy. 7. Human Potential — Erickson Milton, a psychologist, advocated collaboration vs. an authoritarian model of psychotherapy; pioneered the clinical use of hypnosis. 8. Creative Reframing 9. Phenomenological approach — emphasizes the uniqueness of each individual experience of reality at each moment of time. 10. Existential approach — emphasizes man’s capacity to take charge of his life and use free will. 11. Behavioral approach — examines what can be measured systematically; studies of appropriate and inappropriate behaviours that provide the base for therapeutic intervention. 12. Cognitive Therapies — focusing on habitually distorted thought processes. Patients are taught new and more adaptive ways to think and behave. A known Cognitive psychologist, Howard Gardner, realized the value of making art in cognitive operations. 13. Developmental and adaptive approaches — closely related to cognitive and behavioral approaches, these are based on the understanding of growth itself. Viktor Lowenfeld, Mary Wood (special educator), and Geraldine Williams (art therapist) combined the developmental therapy and the adaptive approach, which works towards normalization (Rubin, p. 158 to p. 180). Based on my own experience and some of my colleagues’, I use the visual arts as one of many ways to open communication with seniors with dementia. It is done in an effort to access their memories, provide an opportunity to express themselves creatively and most of all provide an opportunity for enjoyment, which in turn leads to improved quality of life. In examining the role of art therapy in relation to my own work in creative expression activities and dementia, I selected a sample of authors from several arts modalities as well as occupational therapy in order to represent the larger community. An exhaustive examination of the full extent of the literature is beyond the scope of this dissertation. I also contacted the Director of the Vancouver Institute for Arts Therapy for advice and had numerous discussions with her on the role of art therapy and the population it 20 serves. These discussions helped tremendously to sort out some misunderstandings and brought to light the similarities and differences between arts therapy and my program on creative expression activities for seniors with dementia. Three key books that create the foundation for students of art therapy were selected for detailed study: T. Dailey (1992), Art as therapy: An introduction to the use ofart as a therapeutic technique, S. McNiff (1988), Fundamentals ofart therapy, and A.J. Rubin (1998), Art therapy, an introduction. These publications vary in their philosophical approach to current art therapy interventions. Although art therapists claim expertise in working with a wide range of clients, the following review will bring to light why there are so few articles on art therapy with a focus on dementia. One example in particular demonstrates the lack of knowledge of dementia as a disease. Cathy Malchiodi (2003), an internationally recognized authority on art therapy, lists the people art therapy serves. Among them are “people with cancer, HIV, or other serious illnesses, older adults with dementia, Alzheimer’s disease, or disabilities (p. 2). According to medical classifications (Agronin, 2004), dementia is an umbrella name that includes 72 different brain diseases and Alzheimer’s is one of them. Teresa Dailey T. Dailey, in Art as therapy: An introduction to the use ofart as a therapeutic technique (1992) introduces a philosophical approach to art therapy. In the following passages Dailey defines and explains what art therapy is: Art therapy is the use of art and other visual media in a therapeutic or treatment setting (p. xii). Therapy involves the aim or desire to bring about change in human disorder .... Effective therapeutic procedures are those which result in fundamental and permanent change, and so, as Ulman argues, therapy is “distinguishedfrom activities designed to offer only distraction from inner conflicts; activities whose benefits are therefore at best momentary. (p. xiii) Dailey states that although painting is somewhat therapeutic to the artist, the final product is an end in itself, and is exhibited as a work of art; the process of creating it is secondary. ... In therapy, the person and process become most important, as art is used as a means of non-verbal communication (p. xiii). However, Dalley recognizes that not all clients can be rehabilitated and she points to “those people with severe mental or physical handicaps, psychogeriatrics, and the long-term institutionalized” (p. xviii). With this population she agrees that the arts should be used “for enjoyment, exploration, and stimulation”(p. xviii). She also places less emphasis on the final product and sympathizes with people in hospitals and institutions, where “art therapy is probably their only outlet and opportunity for individual expression, stimulation, and creative occupation” (p. xviii). For them, Dailey suggests a “variety of sensory and tactile experiences; making things with others help interaction, communication, and awareness of other people” (p. xviii). The initial thought of Dailey’s view of art therapy is that there is an expectation of rehabilitation for clients entering the treatment of art therapy, except for mentally ill people with whom the expectation is lower in terms of artwork quality and their ability to produce it. Perhaps she is right in her view, but what is continually disturbing is the tendency to lump the elderly in long-term care facilities together with mentally ill people without discrimination. The lack of understanding of what dementia is all about is apparent. Dailey’s book was published in 1992, but must have been written in the late ‘80s, when the new person-centred approach to dementia care was in its infancy and not yet a recognized force. The sensitivity and the compassion for the elderly with cognitive and physical disabilities are present, but the knowledge of dementia as a disease is lacking. This is most apparent in one chapter in Dailey’s book, written by Suzanne Charlton (1984) who discusses art therapy with long-term residents of psychiatric hospitals. Charlton states that “[O]lder 21 people often develop fixed thought processes with a deterioration in their ability for abstraction and expression” (p. 19). Such a statement would draw harsh criticism from scholars in the field of gerontology who would identifS’ it with ageism (prejudice against older people). According to Teague, McGhee, Rosenthal and Kearns (1997), “Despite the progression of senescence from a biological, psychological, and social perspective, the aforementioned changes are not universal” (p. 75). As decline in aging is not universal, so are the symptoms of dementia, which differ from person to person and take on various cognitive and physical impairments. Not all seniors with dementia suffer from depression and not all display mental disorder except for forgetfulness and disorientation. It all depends on the stage of the disease, how much damage has occurred to the brain and where in the brain it happened. Chariton (1984) also suggests that “too many art materials can add to the confusion of older residents keep the length of the session short” (p. 19). Based on my experience working with seniors with dementia, a rich presentation of meaningful resource material was one of the highlights of enjoyment and delight that contributed towards improved communication, engagement and interaction with seniors with dementia. It was also a source of inspiration. The Creative Expression Activities Program was planned to be long enough to allow meaningful socializing, gain trust of the participants, refresh memories or provide resource information for immediate use, and allow seniors to take their time to digest information and react to it. DaIley focuses mainly on children, adolescents, young adults and the mentally ill. People with dementia are included in the group of the mentally ill. Although there are gaps in knowledge of dementia as a disease and the care for it, arts therapy still contains many elements that are important for seniors with dementia. With time and broader education, arts therapy will adjust to the specific needs of seniors with dementia. It is almost redundant to say that Dailey understands the importance of providing opportunities for people to express themselves creatively, since her occupation is focused on providing such opportunities. In her writing she sums up her thoughts about creativity: “Any theoretical approach to art therapy must take account of the concept of creativity, which has its roots in all art processes” (p. xv). She also recognizes the important role the therapist takes on in stimulating responses and social interactions. Depending on the approach to intervention, “Art therapists are participants as well as observers in the therapeutic process” (p. xx). The art therapy session is basically divided into two stages: the first stage involves painting or other creative activities, while the second stage is a discussion that focuses on the art produced, how it makes the client feel and how it reflects their feelings. Dailey shares some concerns regarding the artwork’s analysis produced during the intervention: “Even the most experienced art therapist cannot be totally confident about correct interpretation without active participation and co-operation from the client within the therapeutic encounter” (p. xx). This statement has implications when interacting with seniors with dementia: a. How do we define co-operation? b. Would stories based on illusions still be considered as co-operation? c. How can drawings based on active participation but on no memory recollection be approached in the process of art analysis? The most critical question that is yet unanswered is: is there a valid reason why the artwork produced by people with dementia needs to be analyzed psychologically? What knowledge are we going to gain from it? How relevant is the content in the drawings when the past may have been forgotten and so is the present? Why analyze the work of seniors with dementia if rehabilitation is not a serious consideration in a progressive disease with no cure? Charlton (1992) in Dalley’s book does bring up the issue that art analysis is not always the right thing to do, especially with long-term residents who just want to paint. In this situation according to Charlton “... therapeutic interpretation are neither appropriate nor beneficial” (p. 187). It is not clear if people with dementia are included in this observation. Yet, the emphasis is always to encourage creative expression. At the beginning of my work with seniors with dementia, I often asked myself whether I was missing an important source of information by not going into art interpretation for therapeutic reasons. I also asked myself whether my direction in trying to understand creative expression and dementia should be explored under the wings of arts therapy. The more understanding I gained about art therapy and about dementia as a medical condition, the more I realized that there was no point in using the arts for 22 psychoanalytical purposes. I was there to enjoy the moment together with seniors who have dementia. I had no need to probe into their problematic behaviour or attempt to change it — even though I wished to improve problematic behaviour, such as restlessness, pacing and shouting. However, the prevailing goal was to improve the quality of life of seniors with dementia. And so, this approach did not become part of the creative expression program. Dailey recognizes that art therapy is an evolving profession that still struggles to gain full recognition. According to her ‘The ultimate goal must be to establish art therapy as an integral and valued part of every treatment programme” (p. xxvi). Dailey’s View on Art Therapy and the Therapeutic Environment Dailey refers to the therapeutic art room briefly here and there in her book; Chariton actually devotes a separate title to it: “The art room” for mentally ill patients in psychiatric hospitals. “The art room provides a setting where residents can experience trust, experiment with different behaviour, exercise choice, and feel a sense of competence” (p. 175). She states that most hospitals “lack space and facilities for creative work” (p. 185). She would like to see art rooms where residents are allowed “to get messy, to experiment, to ponder, or to invent” (p. 185). The art room should include stimulating things such as books, pictures and other interesting objects. Charlton (1984) would like to see a variety of space, including spaces for one-on-one intervention and for group activities. She even suggests specialized areas individuals can claim as their own, doing activities such as “pottery, weaving, and printmaking” (p. 186). Shaun McNiff McNiff is another key scholar in art therapy whose work was recommended by Lois Woolf, in particular his book Fundamentals ofArt Therapy (1988). Out of the three publications recommended, it was the writing by McNiff that caught my imagination and became a source of inspiration. As a result, I have been reading most of his writing; his philosophical approach to arts therapy and to the engagement in the arts in general is very relevant to creative expression in dementia care. Although I differ with him on several issues, the overall concept of going with the flow fits within the program on creative expression activities for people with dementia: McNiff defines and describes art therapy as: The engagement of both materials and emotions (p. 8).. .Art therapy is an expression of our desire to know more about images and people and to do more with them ... whether in words or images, they are concerned with exchange and opening to whatever presents itself (p. 6). McNiff also states that art therapy is about contradictions, “[T]he Psyche is not as predictable as the highway ... It is not fixed in material forms” (p. 7). He also tries to reassure therapists who feel the need to be in control by planning every detail in advance and advises them not to be “... afraid of chaos ... looking for themes and messages . . .“(p. 7). This statement is actually the theoretical foundation for qualitative research, such as ethnography and grounded theory, and may lead to beneficial observations in a clinical setting. Although the overall themes in the creative expression activities program are pre-planned and the first segment of each session is directed through visual and verbal stimulations, the rest of each session is free flowing and ‘spontaneous’ as McNiff calls it (p. 5). By having all sessions planned in advance, Lisa, an art educator who became an art therapist, commented in a dialog with McNiff that advanced planning to reduce risks of chaos in the classroom might have jeopardized the flow of creativity (p. 7). McNiff believes that children in unstructured lessons do not need much to start drawing. However, in my experience, seniors with dementia need to be stimulated and provided with information to initiate the process of creative expression. Pre-planned sessions versus spontaneity raises very interesting questions that are worth exploring in future research. Would seniors with dementia initiate art work if: a) art supplies were displayed in view and in easy reach? b) Would they start drawing if a facilitator was not present? In short, c) What would it take to engage seniors with dementia to become involved with art work? 23 McNiff does not limit himself to the visual arts only. He believes in endless possibilities within the media. He is interested in what other colleagues are doing with other materials and likes to integrate them in his own work, such as rhythmic expression, storytelling and the performing arts (p. 29). He sees the motions of dance when helping a person hold a brush and he likes to talk during the intervention. Unlike Dalley, McNiff does not feel comfortable in therapeutic art interpretation alone for the following reasons: The use ofdiagnostic labels is actually one ofthe most anti-therapeutic things we can do... The label serves the purpose ofkeeping people in their designatedplaces. This can be catastrophic with psychopathological labels. Even positive and illustrious labels, titles and degrees can become serious obstacles to change and imaginative transformation. (p. 97) MeNiff finds it is more important to approach clients in a comprehensive way through interaction, to find out what they want and meet them where they are at that moment. As stated before, he is not worried about unpredictable situations that may not fit “within the confines of the psychopathological diagnostic drawing test clichés because we fear what we can be, what we are not” (p. 20). He continues to explain that “Interpretation is both intuitive and intellectual, verbal and non-verbal. Art interpretation is sensual and imaginative ... For me it includes both cognition and perception” (p. 46). Interestingly, McNiff reveals that art therapists don’t participate in the art activity with their clients. They act more as observers: Art therapists ... rarely communicate through their medium because their artistic values are not based on interactive process, and this makes it unnaturalfor them to work together with clients ... Ifimages are generated by the patientfor the purpose of diagnostic assessment, then it does lead to role confusion when the therapistpaints. (p.41) McNiff raises an interesting question as to what makes an act an artistic act. According to him “Art is whatever manifests itself’ (p. 28) and needs to include the soul of the person. Art is a matter of intent. What is perceived as art depends upon the attitude and values of the person. Anything, afound object, or a series oflines can become art. The only limits are the range ofthe artist’s perception, available materials and imagination. (p. 28) He does not see the products produced during psychological testing as art, but rather as graphic exercises, since no soul was attached. Occasionally someone manages to produce an artistic product. McNiff’s View on Art Therapy and the Therapeutic Environment McNiff sees a link between the environment, health and creative activities. He focuses on the importance of a designated space for artwork—the studio. However, no other details are provided: I emphasize the studio because we need it more right now. I know that I desire the studio. There is not enough of it in my lzfe. Two decades ofworking with graduate students and art therapy colleagues has shown me that they hungerfor it too, and the phenomenon of art therapy needs the studio. 1ff walk into a medical environment with its chemical and antiseptic smells, my soul is aroused only to the extent that I want something else. The medical environments can sometimes be the antithesis ofart. The studio summons the artist in me and the artist in art therapy. (p. 135) 24 J. A. Rubin In Art Therapy: An Introduction (1998), J. A. Rubin’s book is the third publication recommended by Lois Woolf as an excellent resource with a detailed overview of art therapy and its history. In this book, the focus is on children and young adolescents. Rubin’s clinical vignettes did not include seniors with dementia. Here is Rubin’s definition and description of art therapy: combination ofgenuine expressive art activity with some kind ofthoughiful reflection on the process ... Infact, it is what distinguishes it most clearlyfrom related disciplines. In almost all approaches to art therapy, there is an image-making time and a reflection time. The proportions may vary, and the thoughtful component may be silent. Art therapy, however, is the involved doing p1us the relaxed reflection ... Creating art can indeed be therapeutic, and verbal therapy can be very effective. But there is something about the Iwo together that is really spectacular. (p. xxi) Rubin states that all art therapists understand the importance of the creative process: Equally central in effective art therapy is knowing how to observe another’s creative process acutely, sensitively and unobtrusively. Becoming aware of all the temporal, spatial, and other non-verbal aspects of people’s behaviour with materials takes time and practice (p. 135). Rubin then quotes Robert Ault, one of the key figures in the art therapy field, who wrote in an unpublished 1983 manuscript, “a picture may be worth a thousand words, but to observe the making of a picture is worth ten thousand words” (p. 135). According to Rubin, the best way to understand what art therapy is all about is to observe an actual session, and even better is to participate in it. Rubin brings to light a debate within the art therapy community regarding the multi-arts therapy or generalist approach, as some prefer to call it. Unlike McNiff and his colleague Paolo Knill, Rubin seems reluctant to support the multi-arts therapy approach and she states: It is easy to tell the difference between art therapy and close relatives like music, movement, dance, drama, or poetry therapy — at least when each is offered separately. But there is considerable confusion about approaches, which use multiple modalities. Multimodal approaches are usually called by names like “expressive (arts) therapy” or “creative (arts) therapy”. Although there are afew individuals with the ability to evoke andfacilitate expression in more than one artform, such people are rare. More often, a therapist has training in one creative art modality, along with an openness to and comfort with others. (p. 73) Although she has some concerns about the multimodal approach, she realizes the growing interest in it. It is evident in Britain (p. 78) and in Canada (p. 80). In Canada she mentions Stephen Levine and Ellen Levine, who co-direct a training program in expressive arts therapy in Toronto (ISIS-Canada). “Although most art therapists are still trained and skilled primarily in the visual arts, there seems to be a greater openness to the use of other art forms than in the past” (p. 80). Rubin also differentiates between what is therapy and what is therapeutic, “If the primary purpose of the activity is learning and/or fun, it is certainly therapeutic, but it is not art therapy” (p. 63). Rubin’s View on Art Therapy and the Therapeutic Environment There is a brief comment in Rubin’s book regarding the therapeutic environment: “Regardless of what is done, there are a series of necessary steps ... They begin with setting the stage, a major element in promoting expression in art therapy. A well-prepared environment can inspire creativity, whereas a confusing or uncomfortable one can have [a] most inhibiting effect” (p. 280). 25 D. Fausek D. Fausek produced A Practical Guide to Art Therapy Groups (1997), whose title promised an interesting look at the subject. Some of Fausek’s suggestions seem to fit less well with seniors with dementia. Although the guide is planned for them, the need to focus on task completion and choice— making activities for low functioning clients, some of her suggested activities do not fit her own classification of abilities. One example is a suggestion for rubber cement glue to be used with low-level clients. I am puzzled by this suggestion, since low-level clients may end up taking it in their mouths or spreading it on their clothes or hands. There are better substitutes for rubber cement, which is a toxic glue. On the other hand I do agree with Fausek about using written comments around the artwork. The artwork serves here as a tool for communication and therefore as a platform for non-verbal communication. She also has no problems helping hand-over-hand if needed. Fausek likes to display the artwork for enjoyment and stimulation. The Performing Arts I have combined the discussion of the two therapies of drama and dance/movement for two reasons: The literature on drama and dance/ movement with a focus on therapy is so new that hardly any material has been written on them. And, as the two are linked together under the title of the performing arts, they share many characteristics. If anything surprised me in the process of reviewing literature on creativity and dementia, it was the literature on therapeutic performing arts. I was not expecting to see it linked to a research inquiry for assessments purposes and outcomes. Perhaps, like many others, I assumed that the performing arts are there to draw on our emotions and provide artistic experiences. But to try and measure the impact on people with dementia is an interesting concept. Is it then measurable? Do we have the tools for it? If not measuring, then how are we going to describe drama, dance and movement? Do we even have the language to describe them? And what are we going to describe? It is clear to me more than in any other form of artistic therapy that this research needs to be conducted by the artists themselves. They need to be an integral part of it, intimately immersed in it, fused with the process and with the clients involved. Dance/movement therapy dates back only as recently as the 1 950s. The dance/movement therapy was started by several women who used dancing to interact with people who suffered from severe psychological disturbances (Levy, 2001). The new field got organized under the American Dance Therapy Association (ADTA) in 1966 “to establish and maintain high standards of professional education and competence.” ( ADTA is a member of the Creative Arts Therapy Coalition that includes other associations of music, art, poetry, drama and expressive arts (Wadsworth Hervey, 2000). Here is a definition and description of dance/movement therapy. “Dance/Movement therapy is the psychotherapeutic use of movement as a process, which furthers the emotional, cognitive, social and physical integration of the individual. Dance/Movement therapists work with individuals who have social, emotional, cognitive and/or physical problems. They are employed in psychiatric hospitals, clinics, day care, community mental health centers, developmental centers, correctional facilities, special schools and rehabilitation facilities. They work with people of all ages both in groups and individually. They act as consultants and engage in research.” ( Research on this topic reveals only a handful ofpublications. According to Wadsworth Hervey (2000) “there is no scholarly dialog on the subject in professional publications” (p. 43). Two articles were found that discussed dancing. One article by Milchrist (2001) is an autoethnographic narrative on the relationship between the author and her mother who has dementia. The author initiated dancing with her mother over a period of 5 years until she could not dance any longer due to advanced Alzheimer’s. Dancing was very much a part of the author’s mother’s life and the ability to dance lasted long into the disease. Milchrist tells us how her mother enjoyed the dance and how they could continue to communicate although verbal communication was almost impossible. It is a wonderful first-hand story that had many moments ofjoy in spite of the limitation imposed by the disease. 26 The second article is by Palo-Bengtsson and Ekman (2002), who discuss social dancing with people with dementia residing in a nursing home in Stockholm. It is a phenomenological study that explores a dancing activity that has taken place in that nursing home for 10 years. The study was carried out in 1995. The results of the study suggest: “that dance music was a good stimulus for making social contacts. The earlier-trained social patterns, old social habits, and general rules seemed to awaken to life in the persons with dementia” (p. 101). Palo-Bengtsson and Ekman (2002) also observed that the people with dementia would wait for their caregivers to initiate the invitation to dance and then would follow them. The study concluded that it was important for caregivers to show “individual creativity, spontaneity, and supportive nursing care” (p. 101). Although the authors observed “response to rhythm, attention to dance music, and joy and amusement” (p. 101) demonstrated by the people with dementia, creativity was not included in the list of observed behaviour. I wonder why creativity was important enough to be linked with the caregivers but was omitted when describing the people with dementia. Was it because of low expectations that people with dementia were not capable of creative expression? Or did the authors have a different understanding of what constitutes creative behaviour? The physical environment is described with very few words: “The dances took place ... in a large hall which was used for several activities for elderly patients, relatives, and caregivers” (p. 103). The main scholar on drama therapy is Dr. Davis-Basting, who is Director of the Center on Age and Community and an Associate Professor in the Department of Theatre and Dance at the Peck School of the Arts, University of Wisconsin-Milwaukee. Her creative work includes nearly a dozen plays and public performances. Davis-Basting, who received her Ph.D. in Theatre Arts and Dance from the University of Minnesota in 1995, continues to direct the TimeSlips Creative Storytelling Project, which she founded in 1998, and makes numerous presentations on creativity and aging across the United States. TimeSlips is an innovative method of group storytelling by seniors with dementia. In the training materials for the program, she writes: Creativity is: adding something new to the world, how we know ourselves, how we grow ourselves, how we connect to others ... through creative expression, we share ourselves and connect to others. Creative expression is importantfor everyone, but it is even more importantfor those with dementiafor whom other avenues ofself-expression can be severely limited. (p. 8) As in other therapies, Davis-Basting combines several creative activities such as storytelling, reminiscence and drama. In a visit to Milwaukee to meet with Karen Stobbe, who facilitates TimeSlips under the direction of Davis-Basting, I observed the interaction between Karen and her seniors with dementia. The stories that were produced in a collective effort by as many as 20 seniors with dementia brought joy, laughter, sadness, jokes, and even slight criticism of peers and staff. Besides Davis-Basting’s work in drama therapy, I found only two qualitative articles on drama intervention. In one by Lepp, Ringsber, Holm and Sellerjo (2003), the authors, who are mainly from the nursing profession, refrained from calling it drama therapy. The focus of their study was on the caregivers. Two categories emerged from the analysis: interaction and professional growth. What was so interesting in this article was the fact that the caregivers were surprised at the level of expression demonstrated by their patients with dementia. Although reluctant to join the program, the caregivers found the program personally rewarding while their patients bettered their quality of life; they “showed their feelings, both joy and sorrow, more openly, their self-confidence grew and they showed greater interest in their surroundings” (p. 873). Drama intervention for therapeutic reasons is so new that the authors in this article had to rely on the defmition of drama in education: “. . . defined as the dynamic embodiment of events involving human beings, is described as a valuable tool for intellectual and emotional growth” (p. 875). 27 In another publication by O’Toole and Lepp (2000), they add: “Drama is both a method and a subject, seen from an holistic perspective, and integrates thoughts, feelings and actions” (p. 875). Lepp, Ringsber, Hoim and Sellerjo (2003) found that a combined program of dance, rhythm, song, storytelling and conversations, designed especially for seniors with dementia, worked well. There were no references to the physical environment. Drama programs, drama therapy, drama intervention — whatever name is adopted in the future — is such a new area that empirical literature on this topic is next to nonexistent. Anecdotal reporting from practitioners in the field of creative expression programs is rich in stories of interesting experiments using a host of activities including drama. It is difficult to isolate drama from other creative expression interventions when it contains so many elements of others. Based on the literature review so far, there is undoubtedly a great deal of overlap among the various models of creative expression interventions. Many try to box combined interventions under the roof of one discipline or another, but in reality it is the mix of interventions that appeals so much to so many of the facilitators who work with seniors with dementia. Reminiscence Therapy, Life Review, Life Reflection and Stoiytelling Reminiscence, life review and storytelling are all ways to communicate with others and express ourselves verbally. A literature review revealed a wide range of publications that focused mainly on these topics in regard to people of nonnal aging. However, specific literature on reminiscence, life review and storytelling in regard to people with dementia is less available. Ten articles and two books were found to be relevant to this discussion in the pursuit of creative expression abilities demonstrated by seniors with dementia and the environment associated with these activities. Although the literature differentiates between reminiscence, life review and storytelling, based on my experience, these elements are interchangeable when facilitating discussion sessions with seniors with dementia. However, understanding the fine differences is important in this relatively new area of research, started in the 1 960s by Robert Butler (1963). The fine differences are important because they are linked directly to the qualifications and training a facilitator may need to acquire to handle the analysis part of life review or life reflection. Reminiscence therapy and storytelling could be left at the first stage of expression without going into depth of evaluation and explanation of one self (Staudinger, 2001). Ursula M. Staudinger (2001), a prominent researcher in human lifespan development at the Dresden University of Technology, Germany, defines reminiscence and life review: Reminiscence is defined as the remembering oflife events, and flfe review is defined as the remembering ofevents plus thefurther analysis ofthese events. (p. 149) the distinction refers to the extent and sophistication ofthefurther analysis and possibly also the intentionality ofsuch analysis ... Reminiscence is defined as reconstructing life events from memory, and lfe review is conceptualized as reconstructing life events from memory plusfurther analysis (explanations and evaluation) ofthe materials. (p. 150) The function ofeither ofthe two processes, reminiscence and life review should be determined only in a second step ... for instance, establishing intimacy could be achieved both by sharing memories and by uncovering insights about one life. Reminiscence, in particular, may be linked tofunctions such as boredom reduction, oral history, or conversational pleasure. Functions specflc to lf’e review may include, for instance, alleviating depression, teaching others, solving a problem, enhancing life insight and wisdom. (p. 149-1 50) In her literature review on this topic, Staudinger finds that the aim of life review is “to repair and return to normal levels of functioning ...“ (p. 154), while remembering the past usually follows a chronological timeline. She felt that a new term needed to be introduced to capture “single life events and sequences of events” (p.154) and named it life reflection. In an empirical study of life reflection versus 28 life review, Staudinger (2001) found that older participants engaged in life reflection to “balance and integrate their life as lived” (p. 157). Although Staudinger does not refer directly to creative expression abilities in discussing life reflection, she does bring up elements that follow the definition of everyday creativity such as growth in self-understanding and finding the meaning of “life as lived”. To encourage the process of life review, Butler (1974), in Kasi-Godley and Gatz’s article (2000) on psychosocial interventions for individuals with dementia, used triggers such as: written or taped autobiographies; pilgrimages, either in person or through correspondence; reunions; construction of a genealogy; creation of memorabilia through scrapbooks, photo albums, collection of old letters; verbal or written summary of life work; and preservation of ethnic identity (p. 760). Although literature on reminiscence in normal aging is growing, KasI-Godley and Gatz concluded that “little attention has been given to how dementia might affect the ability to reflect . . .“(p. 760). According to Butler (1974), brain damage should not prevent health service providers from using life review therapy with people with memory impairment. On the contrary, Kasi-Godley and Gatz refer to Cook (1984) and Kiernat (1979): that reminiscence may be particularly importantfor demented individuals’ psychological health given that the progressive deteriorating nature ofthe disease erodes the ability to achieve present successes and makes individuals increasingly dependent on past accomplishmentsfor a sense ofcompetency ... demented individuals retain much ofthe capacity to recall and integrate the past because remote memory is spared through most ofthe disease process. (p. 761) Although the memory of factual details such as dates, names and locations may be affected with seniors with dementia, other aspects of memories may still be intact. In my interactions with seniors with dementia I have witnessed numerous similar situations, for example, one may remember learning how to ski, but may not remember where and when it took place. One may remember being married, but have forgotten to whom and if children were involved. Comments such as “I must have been married at some point, aren’t we all?” are common. This fascinating behaviour has been observed by researchers and practitioners in the field of dementia care and was discussed in depth in Question One. Understanding the fine differences of how memory manifest itself in people with dementia is most important, especially when facilitating sessions on creative expression activities. Until I read Patrick Colm Hogan’s (2003) book, The Mind and its Stories, Narrative Universals and Human Emotions, I struggled with finding literature that would support my approach to creative expression activities where fabricated stories told by seniors with dementia were as important and meaningful as those perceived to be true stories. One could never be absolutely sure whether a story may also include experiences of others to be claimed as their own. Hogan compares this behaviour to children’s storytelling and supports it with quotes from Miller, Hoogstra, Mintz, Fung and Williams (1993), “a child might appropriate and use for his or her own purposes someone else’s experiences, someone else’s story. Framed in this way, any story has the potential to be personalized story” (p. 91). Hogan sees this behaviour in adults as well and states: it seems likely that this sort ofthing occurs with authors all the time. It seems likely that authors incorporate autobiographical material even in entirely nonautobiographical works (for example, in filling out characters in historical novels) throughjust such a process ... retellings supports not only our account ofaesthetic responses, but parallel accounts ofartistic creation.” (p. 69) So, according to Hogan (2003), we are all capable of incorporating experiences of others into our own storytelling intentionally or unintentionally. Although Hogan does not discuss dementia, he does discuss the link between literature and the human mind, which includes storytelling and memory and which he 29 calls “verbal art” (p. 3), where people share their “ideas, perceptions, desires, aspirations, and ... emotions It is an activity engaged in by all people at all times ... something people do, and always have done, in all parts of the world ...“ (p. 3). Verbal art is a form of creative expression. While Hogan calls it verbal art, Cheston (1996) describes the action of storytelling as a “new shape and form to the present” (p. 582). Yen-Chun Li Yu-Tzu Dai and Shiow-Li Hwang (2003) define reminiscence “as a mechanism for adapting to stress” (p. 298). All of these authors support the definition of everyday creativity that was discussed previously. Bernie Arigho (1997) summarizes very well the relationship between reminiscence and creativity: The success ofreminiscence work is measured in terms ofthe extent to which it enables people to participate in meaningful and enjoyable activities. Thefocus is on being active and creative in the here and now, though the inspiration is derivedfrom the there and then. (p. 188) From medical observation, we learn that people with dementia suffer from illusions and that fabricating stories is considered a common symptom of the disease. From a medical point of view this is problematic behaviour, less tolerated and in need of being treated. From a societal point of view, there is a perception that these people may have lost their minds, they may be considered unreliable and living in their own world, one that is disconnected from reality. However, if we accept their reality, we can help remove the stigma attached to their behaviour. The change needs to occur in our attitudes towards people with dementia. By creating a friendly and accepting environment, we allow the persons within the disease to continue to live their life to the best of their remaining abilities. Cheston (1996) in his article Stories and metaphors: talking about the past in a psychotherapy group for people with dementia reacts to the common perception that people with dementia are engaged in meaningless talk, “their memories are defective, and their reminiscences are of little importance...” (p. 598). He argues “that there are other stories to be told about the talk produced by people with dementia if we can only allow ourselves to listen to the poetical, the metaphorical aspects of language” (p. 598). He also sees: Self-narratives and stories ... as a mean ofcommunication and as a focus for exploration. They can permit a rich world, a place ofre-membrance, a re-creation of people, ideas and images so positioned and constructed that they lend new shape and form to the present. The creation ofa story permits a world in which present dilemmas, uncertainties and hopes can be lived through. (p. 582-583) Since we cannot, at the present, change dramatically the progression of the disease, we might as well work with it instead of against it. The question is then, how do we go along with realities experienced by seniors with dementia? How does reality manifest itself in the physical environment and in human relationships? The answers lie in our services, interventions, planning and in design solutions for people with dementia. For example, in a documentary Memory Lane (2003) on architectural design for people with dementia, one solution provided was very imaginative. Given the average age of seniors with dementia today, we can trace back to the 1950s and l960s when these people were in their prime. Through research we can recreate old streets, neighbourhoods, colors, furniture, fashion, ice cream parlours, cars, music, dances, food, customs, and so on. In this documentary, a Long-term care facility recreated a section of a street along its property that was designed to replicate the 1 950s in a typical North American urban setting. The ‘neighbourhood’ provided opportunities for seniors to sit in coffee places and purchase their own ice cream as they used to in the past. For normal aging people it may look like a Hollywood movie set, however, it is real to seniors with dementia who can still remember some of their past. Speakers at an American Society on Aging conference on generation gaps in Denver, 2001, commented that about every ten years, there is a significant shift in the western society’s taste in clothing, music, customs and so on. If that is true, then the present generation of Baby Boomers could adjust the make-believe street to include Elvis Presley, Bob Dylan, mini-skirts, portable phones, fat-free foods, photos of known citizens and politicians and more. 30 This approach is the exact opposite of reality orientation as developed by Dr. Camp Cameron in Ohio (discussed earlier) for seniors with dementia, which is still being practiced in various facilities. Instead of constantly repeating information that may sound foreign, meaningless or hard to retain, seniors with dementia would be less stressed if we did not confront them or try to train them in the hope they may change. A study by Woods (1992) on reality orientation has shown that long-term memory retention was not very successful or significant after the interventions were completed. KasI-Godley and Gatz (2000) also concluded that reality orientation as an intervention has “little to no effect on behavioural functioning” (p. 769). In comparison to reality orientation that focuses on training individuals to be more aware of the time of the day, the month, meal times and room finding, reminiscence therapy, according to Yen-Chun Lin, Yu-Tzu Dai and Shiow-Li Hwang (2003), focuses on developing “new relationships [that] meet psychosocial and developmental needs” (p. 299). Still, reminiscence therapy is not appropriate for everyone and may have dangerous consequences (Thorgrimsen, Schweitzer and Orrell, 2002). Careful consideration needs to be exercised. If facilitators are not qualified to handle crises, there is a need to arrange backup professional help in case of emergency. Reminiscence, Life Review, Life Reflection, Storytelling and the Therapeutic Environment In the articles on reminiscence as it is linked to dementia care, very little attention is addressed to the environment. The source for reminiscence therapy by Joyce L. Harris (1998) mentioned the physical environment: A conversational grouping in a small, quiet, well-lit area is idealfor a reminiscence group. A small area is likely to have better acoustical properties which creates a better listening environmentfor everyone. A small area also creates afeeling ofgreater intimacy among group participants (p. 46) Harris also points out that furniture and seating arrangements are very important contribution to successful reminiscence sessions. Review Only seven years ago when I started to look for practical ideas to implement in my work with seniors with dementia, I was struck by the lack of information. What I did find was inappropriate, comprising child-like activities that did not reflect the seniors’ cognitive and physical abilities. Nor did I find detailed information that made a link between seniors with dementia, their abilities to express themselves creatively, and the physical environment to accommodate these activities. Today’s literature offers a wide variety of arts-based programs for seniors with dementia; however, there are still major concerns to be dealt with. The literature review revealed the following outstanding issues: Lack ofunderstanding. Dementia as a medical condition is misunderstood due to misinformation, lack of education, lack of experience working directly with seniors with dementia. Some scholars from medical backgrounds lack deep understanding and first-hand experience of what creativity is all about. They may understand it intellectually, but depending on their definition of creativity, they may fail to see how creativity manifests itself in spite of the disease. Artists who are also researchers have a tendency to rely on the medical model for psychological assessments of seniors with dementia. Expectations. There is a tendency to lump people with dementia with the mentally ill without discriniination. 31 There are lower cognitive and physical expectations of seniors with dementia. There is a tendency in the literature to agree on minimizing the sense of failure when interacting with seniors with dementia. However, some may enjoy an appropriate challenge that may reflect respect and appreciation of their remaining abilities. Programs. Most articles focus on methodological aspects of art-based programs while very few discuss how those programs are implemented. There is a shortage of meaningful programs, with purposeful and diverse activities. There is a need for structured activities that allow the seniors to set the pace that suits them. The consensus among researchers is that music has a significant impact on people with dementia in changing moods, recalling some memories, improving communication and social skills, helping to relax, to bring enjoyment, and to get in touch with one’s own feelings. At the same time, some consideration may be given that music may not be suitable for everyone. A strong pattern is emerging that a mix of arts-based programs is the most popular intervention among facilitators who work with seniors with dementia. However, there is definitely confusion about the boundaries between various programs. Facilities. In reviewing the literature on special care units (SCUs), an important finding was that many non-SCUs use approaches similar to SCUs in staff training, environmental design and programming. This could mean that some SCUs offer rather meager specialized features that SCUs are not homogenous and they do not necessarily provide better care than non-SCUs. An approach is developing that perhaps residents in long term care facilities should not be pushed throughout the day to follow rigid rules and schedules, but rather enjoy a calmer pace. People with dementia in larger facilities interacted less with other residents or staff, while in smaller facilities, residents were more interactive. One observation made by Perrin (1997) may have a great impact on the architectural design and communication with seniors with dementia. Perrin found that people with dementia respond best when other people and objects are placed within 3 to 4 feet diameter around them. In Perrin’s words, the environment has ‘shrunk’ to envelop the person with dementia in kind of a plastic bubble and that staff has no problem interacting with this group as long as they are close physically to the clients and within the suggested ‘bubble’. Perrin brings up the notion that if the closeness encourages interaction, it may be an important factor in space design and the attention given to activities in it. In other words, the “bubble’ concept may have an impact as to how physically we interact with seniors with dementia, display our stimulating objects such as art materials, furniture arrangements, locations of easels, strategically placed instructors and so on. New Directions for Research and Implications for Practical Implementation Numerous articles stated that doing research with seniors with dementia presents many difficulties. The population is frail and vulnerable and usual research methods may not be practical. Researchers need to take these limitations into account. Lack ofunderstanding. Need for programs that educate medical personnel, potential caregivers and arts-based program leaders about dementia — differentiating mental illness from mental deterioration and considering the implications for care and activities. 32 Expectations. Need for research on seniors with dementia to study their reactions to programs in care situations. Are expectations appropriate to their cognitive and physical abilities? Programs. Need for research on successful programs with emphasis on practical applications. Facilities. Need for research on the effect of facility design on the well-being of seniors with dementia, on caregivers and medical personnel as it is linked to creative expression activities. Recommendations The literature review revealed that there is a strong need for a multidisciplinary program of creative expression activities for seniors with dementia. In order to achieve it there is a need for educational programs to train facilitators that would combine expertise in dementia care with programs on creative expression activities in a comprehensive way. In addition, architectural schools need to include courses on designing for the elderly with a focus on dementia. There is a need for forums where researchers and practitioners from various arts-based programs can meet to exchange ideas and create new alliances. Ideally, such forums would include input from the medical community. A strong pattern is emerging that a mix of arts-based programs is the most popular intervention among facilitators who work with seniors with dementia. There is a great deal of overlap among the various models of creative expression interventions. As they grow closer and cross over, many try to box combined interventions under one discipline or another, but in reality it is the mix of interventions that appeals so much to so many of the facilitators who work with seniors with dementia. Clearly, much more research is needed in the area of creative expression and dementia, especially with a focus on what works and what does not work with these seniors. There are no studies that explore the ability of Alzheimer’s patients to appreciate artistic expression. This is, potentially, a new area for research. Researchers should be encouraged to cross the boundaries of their own fields and expertise. They should be allowed to stretch their imagination and develop fresh new ideas without being constrained in the name of science. I believe that every bit of new information has the potential to spiral into new adventures and trigger additional new thoughts. Working with seniors with dementia is full of opportunities to learn about them and about oneself. It is a mutual journey where the researcher and the seniors being studied can learn from each other through layers and layers of rich information. This section of the literature review covers the meaning of everyday creative expression and how seniors with dementia experience it. The recent literature on research in creativity focuses on the work of several prominent scholars. It contains their definitions of creativity to further develop an understanding of what creative expression means and how it manifests itself (fig. 2, see page 9). It is based mainly on the Handbook ofCreativity (1999) that describes the work of Sternberg and his 30 colleagues, on Creativity, Mark Runco’s (2004) most recent work, and on Art, Mind and Brain: A Cognitive Approach to Creativity by Howard Gardner (1982). Following this review, I will provide selected definitions of creativity followed by a discussion of how they follow or contradict the assumptions and approaches to research on creativity and dementia I have pursued. These definitions may derive from quantitative or qualitative studies and from less rigorous studies due to the complexity of this topic and the difficulties arising from conducting research in this field. Gaps in the understanding of the two domains of creativity and dementia and in the combination of them will be identified to provide the base for a new definition that may be more appropriate to research on creativity with seniors with dementia. The new definition will provide a fresh starting point and will continue to evolve as the inquiry progresses. 33 Eight models were reviewed for their appropriateness to tackle research on creativity and dementia and although no one specific model was definitive, many of these models provided important information as the backbone for this study. The eight models cover the six approaches in Sternberg’s (1999) Handbook ofCreativity, along with Runco (2004) and his colleagues’ approach in his review article Creativity, and Gardner’s (1982) cognitive approach. Although Sternberg and Runco’s work are more recent, I found that Gardner’s approach fills in gaps of information missing in the others and appears to be more relevant to research on creativity and dementia. Emerging Approaches to Creativity Research Robert Sternberg (1999) introduces the work of 30 scholars in the field of creativity and identifies six approaches to creativity research: a. Psychometric: “creativity ... as a measurable human factor or characteristic” (Mayer, 1999). Sterneberg and O’Hara (1999) were looking for multiple answers “as opposed to one single correct answer” from their subjects. The answers were quantified and rated for creative abilities based on comparative scoring of creative versus non-creative persons. Psychometric assessments take place in a controlled environment. This control may limit the ability of creativity to be expressed spontaneously and in an unpredictable manner. b. Experimental: the study of creativity in which subjects are engaged in creative thinking through solving problems. The aim is to identify factors that improve or inhibit creative thinking. As in the psychometric approach, the experimental approach utilizes quantitative measurements in controlled environments while analyzing tasks prepared in advance that were administered to the subjects. The aim of this approach is to identify the various phases in creative thinking a person goes through. According to Ward, Smith and Finke (1999), research on differences between creative and non-creative thinking in experimental observations found two kinds of cognitive processes: first, generative processes based on existing knowledge and which are part “of ordinary minds” (p. 190); this knowledge may or may not inhibit creativity. Second, processes that are of an exploratory nature and, based on potential function, can be untested proposals that are marked by “originality and appropriateness” (p. 191). Ward, Smith and Finke report on examples of exploratory and generative processes experienced by a writer (Ward et al., 1995) or by an inventor (Finke, 1990). The two processes may happen independently or be combined and operate under various restrictions. They may be generated with a specific goal in mind or for an open-ended situation (Ward, Smith and Finke, 1999, p. 192). c. Biographical: A qualitative, richly detailed narrative study (Gruber & Wallace, 1999) of a creative person through a single case history or through a comparison between creative persons. The biographical approach can also be studied through quantitative analysis of a group of creative people (Simonton, 1999). The aim of this approach is to identify factors in life events that foster creativity. A positive aspect of this approach is that the subject is studied in a personal authentic environment, in contrast to the controlled environments used in psychometric and experimental approaches. The down side of this approach is the concern that the findings of one case study may not be applicable to another case. However, this approach is useful in combination with other approaches as a rich source for qualitative data. d. Biological: The study of creativity through cognitive neurosciences that examine brain activities as the subjects are engaged in creative thinking (Martindale, 1999). None of Sternberg’s 30 colleagues in the Handbook ofCreativity discusses how biological impairments impact creativity. e. Contextual: The study of creativity in a social and cultural context. Collins and Amabile (1999) examine intrinsic and extrinsic motivations and their effects on creativity. Based on empirical studies, they concluded that intrinsic motivation is “conducive to creativity” (p. 299) and is generated by the individual for enjoyment. Extrinsic motivation is defined as 34 having to meet external requirements such as awards and competitions. This motivation is harmful to creativity. Csikszentmihalyi (1999) uses the “systems perspective” to explain the creative process and its external variables. Csikszentmihalyi concludes that in order for creativity to be considered valid, it must be accepted and recognized by the community. f. Artificial creativity: This approach seems to be irrelevant to the topic of creativity and dementia and was omitted. In the review chapter Fifty Years ofCreativity Research in Sternberg (1999), Richard Mayer analyzes the various approaches to creativity research and comments on the gaps and challenges that still exist in the pursuit of answers to questions such as: Can creativity be measured? Which cognitive processes are involved in the creative process? Do life experiences matter? What motivates creative people? What role do biological and evolutionary factors play in creativity? How do social and cultural contexts affect creativity? Can creativity be enhanced? He also sees a need for “new and useful methodologies” to study creativity. He suggests that some of the discussions lean towards “speculation that is only loosely related to empirical data,, by sweeping generalizations that are not tightly supported by research evidence, and by a level of theorizing that is too vague to yield testable predictions” (p. 459). Mayer’s comments on the state of research on creativity resonate with some of the thoughts, questions and difficulties that impede the process of gathering relevant information on creativity and dementia. Providing empirical evidence to support the assumptions of scholars’ statements on creativity can be a formidable task. The literature is short on empirical studies, and the ones provided do not offer an appropriate approach that can capture the essence of creativity in formation. Publications in general cover views that are so widely spread that the focus on creativity and dementia is rarely addressed. It is clear that scholars in this field are grappling with understanding creativity and how to conduct appropriate research that would fit multiple situations. One clear message from Mayer’s review is that there is a need for a multidisciplinary approach to creativity research. One approach some scholars (Gardner, 1982 Redfield Jamison, 1997) find attractive is to focus on people who are already known for their creative powers, since their creative abilities are obvious and easy to access for quantitative evaluation or qualitative observations. Perhaps understanding acknowledged creative people could assist in analyzing what makes these people think or act creatively. What external (environmental) and internal (personal) conditions promoted their creativity? Could these findings be replicated elsewhere in a quest to understand creativity and dementia? Adopting the biographical approach that has been applied to known creative people to understand creativity, it might be possible to study a creative person who has dementia. However, if we use the biographical approach to research creativity, we indirectly adopt the notion that not all people are creative and therefore everyday creativity may not be an accepted concept. But if we adopt the opposite assumption that all human beings are creative, (Ward, Smith & Finke, 1999, p. 189) it could be possible to study any human being. The question is then what kind of creativity are we looking for? Are we looking for exceptional creativity or everyday creativity — one or both? Perhaps we will need to reconsider, readjust and redefine what creativity is. The following section reviews the existing definitions ofcreativity put forward by these scholars. I am aware of the scientific aspiration to meet rigorous academic standards, but I also respect years of experience and wisdom accumulated in this complicated field of inquiry. Therefore, some definitions will be backed by empirical findings and some will be based on theory. Acknowledging the difficulties and the lack of rich empirical evidence should not prevent continuing efforts to pursue creativity research. Perhaps some untested thoughts may lead to a new direction for others to follow that will result in more rigorous tests in the field. There are many factors to be taken into consideration when researching creativity and perhaps utilizing one approach to creativity research at this time is not appropriate and trying to prove the existence of creative expression through empirical research is only one factor in a much more complicated undertaking. 35 In his most recent review article on creativity, Runco (2004) faces the same complicated task as Sternberg did in trying to sort out the various approaches to creativity research and advance the understanding of it. Runco claims that more than ever people need to use their creative abilities in a fast moving technological society, which he describes as a “cultural evolution” (p. 658). He states that his review of the research is based on a framework suggested by Rhodes (1961,1987), which is divided into four categories of creativity research: a. Person. “Research on personal characteristics” (Runco, p. 661), such as a person’s broad interests, intuition, or a “firm sense of self as ‘creative” (Barron & Harrington, 1981, p. 453). b. Product. Outcomes “that result from the creative process”, such as “publications, paintings, poems, designs” (Runco, p. 663). Most research that uses this approach deals with artists well-known for their talents as opposed to ordinary people. Runco also states that “productivity and creativity are correlated but not synonymous” (p. 663). c. Process. A description of a process over a long period of time. Usually involves “divergent thinking and problem solving” (p. 661). d. Press. Was introduced for the first time by Harry Murray (1938) and continues to be used. It refers to “pressures on the creative process” (Runco, 2004, p. 661). For instance, Amabile(1990) refers to the physical environment as a source for influences on the creative process. Runco felt that the four categories of person, product, process and press were not sufficient for a comprehensive approach to understanding creativity and added information from specific disciplines that were “organized by behavioral, biological, clinical, cognitive, developmental, historiometric, organizational, psychometric and social perspectives” (p. 663): Let me describe each in turn. Behavioral perspectives. Runco supports Epstein (2003, in press) in connecting creativity with “insight and novelty” (Runco, p. 664) Epstein, Runco suggests, tested participants in a pre-arranged setting, to see how previous experience could contribute to creative behavior in problem solving. Epstein explains “Insight” as a result of “spontaneous integration of previously learned response” (p. 664). The biology of creativity. Based on medical findings, Runco suggests that creativity research from a biological point of view leans towards “... behaviors and aptitudes” (p. 664). Studies that were based on past medical surgeries to inhibit seizures referred more to the skills of the patients and not to their creative abilities that are defined as “... originality and appropriateness, intuition and logic” (p. 664). Based on empirical evidence, Katz (1997) discovered that the creative process does not limit itself to one hemisphere but requires the collaboration of both sides of the brain. Other researchers, such as Hoppe & Kyle (1991), used electroencephalography (EEGs) to detect brain activity in a group of patients with bisected hemispheres and in a control group. They found that both parts of the brain are engaged when verbal and emotional expression is concerned. Clinical research. Runco sums up creativity research in this category to be focused mainly on mental disorders such as schizophrenia and other disorders such as alcoholism, suicide and stress. Realizing the limitations in past research Runco, Ebbersole and Miraz (1990) turned to a new direction, in which the definition of creativity was expanded to include self-actualization within the context of health promotion. Runco, Ebbersole and Miraz conducted a study with 84 university psychology students. They administered three questionnaires that measured “creative traits, preferences, and attitudes” (Runco, Ebbersole and Miraz, 1990, p. 267). They used the Self-actualization Scale (SAS) developed by Jones and Crandall (1986). To their disappointment they could not establish cause and effect between creativity and self-actualization. However, they did conclude that “Creativity may allow individuals to become self- actualized, or self-actualization may lead to creative behavior” (p. 271). Runco, Ebbersole and Miraz, also make the connection of creativity and self-actualization with “coping and adaptive skills” (p. 271). This connection is also supported by Rhodes and his theory (1990, p. 247) that creativity rises from “deficiency needs for love, acceptance and respect” (p. 251), which in turn lead to self-growth, self 36 expression and self-actualization. Runco also emphasizes the importance of research in this category for the understanding of the individual’s subjective experience. Cognitive research. This category is often studied for creativity by using tests for divergent thinking (providing several answers to a problem), fluency (number of solutions), originality (uniqueness), and flexibility (variety) (Runco, 2004, p. 668). Runco sees these tests as predictors only that may indicate the potential for creative thinking. Although the definition of creativity was expanded to include all of these factors, the solutions for problems provided in the various tests needed to demonstrate that they are appropriate solutions as well. And so appropriateness was added to the definition of creativity that looks for novelty, innovation, flexibility and fluency. Developmental research. Most of the research in this category, according to Runco, is applied to children and adolescents, although research on creativity and adulthood is mentioned here with reference to the latest work by Lindauer (1992). Runco did not look at the work of other scholars with expertise on creativity and aging, like Gene Cohen (2000) or Howard Gardner (1982). Economic factors and theories. According to Runco, this category lacks empirical validation. However, he considers some suggestions that hard times may stimulate creative thinking. Educational and historical research and organizational perspective. While these approaches to creativity research were described by Runco, they were too far removed from the topic on creativity and dementia. Although educational research is rich in studies on creativity, it mainly focuses on children and adolescents. Psychometric research. In this category, creativity is tested for its potentiality through “paper-and pencil” tests, which usually are administered to ordinary people as opposed to eminent persons. This approach to creativity research is involved in comparative studies and their ratings. Psychometric testing is relevant to the topic of creativity and dementia, since people with dementia often go through neuropsychological testing, such as the diagnostic test of drawing a clock, to evaluate memory capacity, which indirectly may or may not indicate creative abilities. This category lacks appropriate tests for seniors with dementia to determine the level of their remaining creative abilities. Social research. Runco reminds us that early creativity research was focused almost entirely on the individual until scholars like Amabile (2000) shifted some of the attention to social influences on the creative process. In these situations, depending on external factors, creativity could be discouraged in the case of competition and criticism, or enhanced by working with other people. There is no mention of creativity, aging and dementia. However, understanding how creativity manifests itself within a social context is very applicable to people in institutional care, such as seniors with dementia in long-term care facilities. In his conclusions, some of Runco’s comments on the state of creativity research and its findings may provide support directly and indirectly to the importance of research on creativity and dementia. Runco concludes, “that creativity is beneficial. Creativity facilitates and enhances problem solving, adaptability, self-expression, and health” (p. 677). He suggests that “creativity research is best understood by considering various perspectives” (p. 677) and that researchers need to stay flexible in their approach when studying the subject. He recommends taking into account the person and their environment. Runco sees the importance of the interplay between clinical work and cognitive perspectives and between basic research and applied research. He makes us aware that creativity is expressed in many ways and in many domains. He recognizes the need to study everyday creativity, which is the ability to cope with everyday problems that does not call for what he calls “high-level achievement or expertise” (p.678). Runco applies his concept of everyday creativity mainly to children. He is disappointed that the field of creativity research is still far from understanding the “mechanisms that underlie creative capacities” (p. 679). A 37 major concern of his is that creativity per se is not really researched, but novelty, insight, productivity and behavior are; he considers these factors the products of the creative process. He agrees with other researchers that “originality is necessary but not sufficient for creativity” (p.679) and yet he misses the connection Czikszentmihalyi (1999) makes that society has the final say as to what makes a thought or a product creative, which leaves originality in question. Of note in particular in Runco’s article is a report of the results of his survey asking 143 individuals in the field of creativity research to rank the importance of research topics, ranging from the most important to the least important. In a list of 36 items, mental health was 16, while neurobiology, mental illness and therapy were at the bottom of the list. Testing and measurement got very low priority as well, while creative behavior topped the list. Which brings us back to the question posed in this paper: what does creative behavior mean? What does creative expression mean? Based on this survey it seems that people in the field of creativity research do not see a strong need to explore the connection between health and creativity. Although Runco did not elaborate on the reasons, it is possible that the pressure to produce empirical findings in the health services domain discourages research known for its difficulties and complexities. To reinforce this possibility testing and measurements also got a low priority. Perhaps the results of this survey may indicate the gap between those who see creativity as a personal trait of eminent artistic talent and those who see creativity manifested in daily routine. It may indicate that any less than eminent talent deserves less attention. These two publications, Runco’s Creativity Research Handbook and Sternberg’s Handbook of Creativity, are considered to be milestones in creativity research; they bring together the work of many scholars in an effort to identify major approaches to creativity research. Mumford used these two handbooks as a starting point for his research on creativity. By studying their content, he concluded that there is a need for “critical comparative tests contrasting the merits of different methods and theories, elaboration and extension of our traditional samples and our traditional measures, and more attempts to develop integrative models” (p. 107). He also concluded that there is a need for more research on topics such as: “practical innovations, cross-field differences in the nature of creative thought, and the effect of creativity on people and social systems” (p. 107). Like other scholars, Mumford’s definition of creativity is still evolving; however, he states that “creativity involves the production of novel, useful products” (p.11 0) Understanding Mumford’s background and expertise in the field of industrial and organizational psychology makes it clear why the link between creativity and a product is an important indicator of creativity for him. In response to Mumford’s definition of creativity, Runco agrees that creativity involves the “production of novel and useful products”; however, he argues that the potential for creativity, which precedes the actual performance, does not bring forth a product to evaluate. Therefore, “creativity may sometimes not involve any productivity whatsoever”... Productivity, then, is an objective indicator but only sometimes indicative of creativity” (p. 138). Runco’s response opens the arena of creativity research to new directions, which potentially may help support research on creativity and dementia. Other Perspectives on Creativity and Expression Creativity. According to the Random House Webster’s College Dictionary (1995), creativity is “the ability to create meaningful new forms, interpretations, etc; originality,” while being creative “result[s] from originality of thought; imaginative,” and create is to “evolve from one’s imagination, as a work of art or an invention.” This definition still leaves the reader with insufficient explanation, which leads to the next question: Does creativity always need to result in an invention? Is any deviation from inventiveness considered less or non-creative? In Sternberg’s handbook scholars such as Mayer, Gruber & Wallace, Martindale, Lumsden, Feist, Lubart, Boden and Nickerson (1999) make strong connections between creative abilities and products that can be evaluated for their creativeness. Gruber and Wallace (1999) define creativity as “novel and value: The creative product must be new and must be given value according to external criteria” (p. 94). If there is an agreement in most definitions that creativity involves 38 the creation of original and useful products, who decides what is original and useful? What evaluative systems do we have for assessing originality and usefulness? According to Csikszentmihalyi, (1999) even if an idea or an act resulted in a product, it would not be considered creative unless society accepted and recognized it as such. As he states: Originality, freshness ofperceptions, divergent-thinking ability are all well and good in their own right, as desirable personal traits. But without someform ofpublic recognition they do not constitute creativity. Infact, one might argue that such traits are not even necessaryfor creative accomplishments. (p. 314) Csikszentmihalyi’s definition helps redefine creativity and opens it to new possibilities that may lend themselves to research on creativity and dementia. According to Csikszentmihalyi, creativity only exists when it evokes some form of public recognition. But public recognition can exist on different levels within specific contexts. For eminent artists, public expectation is high. For seniors with dementia, the entire context changes and so do public expectations. Two years ago, I mounted an art exhibition by seniors with dementia as an event exhibiting creativity. More than 4,000 visitors attended, many of whom left comments showing their surprise at the level of creativity on display. They were expecting much less from these seniors. In this instance the community showed their positive support of the exhibit based on the level of expectation. Not all scholars in the field see the end-product as a necessary element in defining creativity. According to Ward, Smith and Finke (1999) creativity may or may not result in generative expression and may stay just in the exploratory phase in the form of an idea or creative thinking. Feist’s definition of creativity (1999) still supports the notion of inventiveness but broadens the definition to include the ability to be flexible as well, through “novel and adaptive solutions to problems” (Feist, 1999, p. 274). Expression. In Webster’s New World Dictionary (1986) Expression means, “a putting into words or representing in language. A picturing, representing, or symbolizing in art, music, etc. A showing of feelings, character, etc. (laughter as an expression ofjoy). A look, intonation, sign, etc. that conveys meaning or feelings (a quizzical expression on the face)” (p. 495). This definition is sufficient to cover the various modes of verbal and non-verbal expression that will be discussed later in more detail. Based on these definitions, it is possible to develop a new definition of creativity that could be more inclusive, embracing expressions exhibited by people who may not be considered by society to possess creative abilities, such as seniors with dementia. If creating is an act of expression, it may be original or not, yet it brings something into being — perhaps a line drawn on a blank paper, a song, a thought, an idea. In other words, expression changes the existing status quo and creates new situations. Therefore, a new situation may be considered equal to a creative act. In Art, Mind and Brain, a Cognitive Approach to Creativity (1982), Gardner admits that he knew very little about adults with brain damage when he first began to work with them. He describes how he came to appreciate the “person” within the individual. Working with these individuals he realized how much they varied from one another and how they still were able to make the best of their remaining abilities. Gardner’s work in the US and his appreciation and positive attitude towards brain-damaged people gained recognition in the 1 980s, about ten years before Tom Kitwood in England introduced the concept of personhood. Personhood stands for an approach that relates to the person within the individual with dementia as opposed to the medical model, which treats the symptoms of the disease. It is possible that the two scholars did not know about each other’s work, since both were situated in different countries and came from different fields of expertise; Gardner from education and Kitwood from social work. Gardner’s main interest in working with brain-damaged adults came from a desire to understand “better the nature of human artistry” (p. 267), which would shed light on impaired cognition as well as normal cognition. Gardner based his work on neuropsychological studies that focused on language disorders such as aphasia. He studied gifted artists who had suffered brain damage and “normal 39 nonartistic individuals” (p. 267). Both groups were observed working in three art forms: painting, music and literature. It should be noted that Gardner did not question what is considered creative. He did not elaborate on how he decided who was considered a highly artistic person, and who was not. Although Gardner seemed to divide individuals into artists and non-artists, he still believed that “nearly all of us have attained some modest artistic skill. We can sing a song, make a drawing, tell a story” (p. 320). Gardner was more interested in the abilities of brain-damaged people to express themselves and refrained from discussing the quality of the expression. The Meaning of Creativity, Gaps in Information The overarching definition of creativity, as these various researchers present it, seems to concur that ideas and products are creative as long as they are new and useful. In addition, they cite the ability to adapt, maintain flexibility and fluency and be valued by society. None of the researchers discussed the issue of creativity and dementia. Sternberg’s handbook ignores the subject of creativity and aging altogether. Runco’s article on creativity does bring up briefly the issue of aging and creativity but not creativity and dementia. Gardner discusses how creativity manifests itself in people who have suffered a stroke, bisection of the brain, and other damage. While Gardner makes it clear that not all individuals with brain damage are mentally ill, other researchers (Eisenman, 1997) actively associate creativity with mental illness or other exceptional personal traits. All researchers in these publications agree that creativity is a complicated subject and there is a need for more research. Many researchers agree that one approach to the study is not sufficient and that research should consider studying creativity from several approaches, including interdisciplinary approaches that would provide empirical findings (Gardner, 1982, Mayer, 1999). Based on creativity definitions reviewed here, I came to the conclusion that none of them are relevant in their entirety to the study of creativity and dementia and none reflect the situation in which seniors with dementia operate. Some parts of the definitions may apply, such as the need to be able to adapt to new situations, flexibility, fluency, everyday creativity and society’s acknowledgment of the creative idea or act. What is missing is literature on aging that may provide information on how creativity manifests itself in later life with a possible focus on dementia. Opening up the definitions from eminent creativity to everyday creativity allowed researches like Runco and Richards (1997) and Runco, Ebersole and Mraz (1990) to further develop this concept and its contribution to the quality of life at every stage in human development. They say that creativity manifests itself in being curious, in an ongoing process of self-evaluation and personal growth. Quality of life in adulthood is defined by the level of physical, social, mental health and role function (Anderson, 1997). Teague, McGhee, Rosenthal, and Kearns (1997) defined quality of life as “a dynamic process in which each adult has unique or different health needs” (p.35). Their understanding of the quality of life of older people supports Runco, Ebersole and Mraz (1990) in defining the concept of everyday creativity, which values the social, emotional and spiritual aspects that contribute to the notion of what makes a person whole. In his (2003) response to Mumford (2003), Runco elaborates further on how he sees everyday creativity manifest itself: Everyday creativity may be involved in the problem solving that occurs when an individual drives to work and decides what attire is bestfor a particular day ‘s schedule, improvises while cooking or decorating the home, decides the best way to entertain guests or children, and in countless otherfairly mundane ways. Without recognition of everyday creativity, we will overlook individuals whose creativity is not manifested in art, science, or some professionalfashion. (p. 139) Following this train of thought, Runco and Richards (1997) state: Everyday creativity is the originality ofeveryday lfe, the doing ofsomething new in the course ofone ‘s activity at work or leisure ... In every case, the activity involves 40 innovative elements which are also meaningful to others — two common criteriafor creativity” (p. 97). [Creativity] “emerges unpredictablyfrom the richness ofour diversity — both within our own minds, and between all ofus in this multipotentialled world. We should cherish this diversity, preserve, and enhance it, for it may help us in ways we cannot imagine now.” (p. 449) Based on these definitions and explanations of creativity, we can now investigate further how creativity manifests itself in later life and examine the qualities valued the most at this stage. To understand creativity in later life, I will describe three studies. The first, a qualitative study done by Fisher and Specht (1999), concerns seniors in normal aging. The second is a quantitative study by Smith and Van Der Meer (1997) that is included to provide contrast with the two qualitative studies. The final qualitative study by Davis Basting shows how creativity manifests itself in seniors with dementia. Creativity and Aging In Successful Aging and Creativity in Later Life (1999), Fisher and Specht conducted a qualitative study over a period of two months, was to examine the link between successful aging and its relationship to creative activity as older people see it. The study included thirty-six seniors, men and women, ages 60 to 93. These seniors participated in an art exhibit and were interviewed for their understanding of successful aging and creativity. Two independent interviewers asked closed and open-ended questions from a survey questionnaire. The interviews lasted from 45 to 60 minutes. Using content analysis, six topics emerged as important for successful aging: “a sense of purpose, interaction with others, personal growth, self-acceptance, autonomy and health” (abstract, p. 1). Reports of the participants’ opinion on being involved in creative activities showed that it contributed to “a sense of competence, purpose and growth” (p. 1). Artistic creativity encourages “problem—solving skills, motivation, and perceptions”, (p. 1) all of which enhanced the quality of the seniors’ “everyday lives” (p. 1). Fisher and Specht found that participants identified adaptability, flexibility and coping as important elements to successful aging; these are the same elements that other researchers in creativity describe as essential factors in the creative process. Fisher and Specht also found that their participants valued their artwork, the opportunity to use their skills, express their thoughts and use their imagination. Most participants expressed joy and satisfaction in being involved in a creative process. They also referred to these activities as an opportunity to forget their health problems and to become absorbed in their work. The activities encouraged a positive outlook on life and provided an opportunity to engage in social interaction. Fisher and Specht found it intriguing that the participants put more emphasis on the creative process than on the product itself, and on using the same “dynamics, motivation, attitude and imagination” in other areas of their lives. It appears that these dynamics allowed them to “express a sense of self and manage everyday life” (p. 1) Fisher and Specht link their findings on creativity and aging with the definition of creativity by Lubart and Sternberg (1998, pp. 25-26): “Creative performance involves the intellectual processes of defining and redefining problems, choosing appropriate problem-solving strategies, and using insight processes to solve problems”. With this study the definition of creativity and aging can be expanded to include the ability to define the problem, choose appropriate strategies and use insight to meet challenges in life. As one of their participants put it: “I’m not done with life. In some ways, I think I’m just beginning to see what it’s all about” (p. 13). Fisher and Specht concluded that life itself is a creative expression. Their findings represent the core of how many old people approach their lives. Anecdotal reports and personal experience working with elderly people serves to support this observation. Smith and Van Der Meer in Creativity in Old Age (1997) provide an example of an empirical study on creativity in old age. Although not put forward in a clear way, the underlying assumption is that not all people are creative. The aim was to explore how old people handle health crises, aging and death. Smith and Van Der Meer concluded that creative people face aging, death and illness in a less negative way than non-creative people. 41 The group under study included subjects between 67 and 86 years old. The control group had people between 70 and 72 years old. The control group was tested over a period of one year while the group under study was tested all in one day. Three instruments were used, all following a pre-planned, time sensitive method. The instruments included the Meta-Contrast Technique (MCT) that measures anxiety and defence against anxiety by using various themes of visual images, the Identification Test (IT) that examines the subjects’ own projections of meaning on vague images, and the Creative Functioning Test (CFT) that presents ordinary and non-threatening images. This study is an example of some of the difficulties researchers face in carrying out projects that involve an older population. Several flaws were evident in their research design: a. The two groups were not comparable in age. The age span from 67 to 86 is too large. b. The testing period was not comparable. The group under study was tested in one day while the control group was tested over one year. c. The time-sensitive testing approach is not appropriate for this age group. The literature is rich in findings (see below) on physiological and cognitive slowing down with aging. Does that mean the older person who needs more time to process information is less creative? d. The interview questions concentrated on highly stressful issues such as fear of illness and death that may have primed the responses of the participants and may have played a factor in their responses. Older people, encountering stressful topics where they were required to respond within pre determined time limits, may find they have no opportunity to reflect, to come up with spontaneous answers, or time to think creatively. The approach to neuropsychological investigation described by Una Holden (1995) is much more applicable in situations involving older subjects. Holden recommends: setting a relaxed atmosphere; making sure the tasks are suited to the participant, the situation is friendly and encouraging; giving the subjects the opportunity to succeed as much as possible; keeping the interview short and presenting questions a little at a time — an approach that is better than too much at once — and introducing interests, social skills, experience, and personal standards to be discussed at the beginning and through the interview (p. 35). For her part, Amabile (1990) reports that external evaluative processes of one’s creative abilities are harmful to the creative process itself. Of the two studies, Fisher and Specht’s appear to have taken the more appropriate approach to examining how older people perceive creativity and how they use it to face life experiences. To continue the evolution of definitions of creativity, I have moved from creativity of eminent individuals to everyday creativity as a trait of ordinary people, to creativity as an expression of life, with a focus on creativity in old age. The next step is to examine creativity in old people with dementia. There are very few empirical studies on this topic and the ones found are limited mainly to single abilities such as singing, dancing or painting. The topic needs study from an interdisciplinary perspective delving into the richness and complexity of what it means to be old and creative while being physically and cognitively impaired. The next qualitative study is unique since its author’s philosophical approach to creativity and dementia fits within the topic of this study and is one of the few studies available on this topic in the literature. Looking back from loss: Views of the self in Alzheimer’s disease by Anne Davis Basting (2003) is based on three narratives or autobiographies as they were written by persons with dementia. Davis Basting does not present these autobiographies for their literary quality, but rather to point out the preservation “of selfhood in the midst of its perceived loss” (p. 89). She supports her work with Tom Kitwood’s (1997) approach to personhood, which treats people with dementia as “whole beings” struggling to cope with their disease. Davis Basting finds the three authors maintaining their social identity (how others perceive us) intact and comments on the amazing self-awareness they have of the deterioration of their personal identity (our sense of who we are). Davis Basting’s authors are aware of their problems, they are coping with the disease as well as they can and finding ways to express themselves creatively through writing. All authors would like to leave a legacy behind that may be useful one day for others; this shows the ability to plan for the future. Davis Basting’s authors demonstrate qualities that are included in definitions of creativity: the ability to identify a problem and apply a solution to it, the ability to have the motivation to produce a useful product, the ability to have a vision and plan for the future with the help and recognition of the community, family and friends and ofDavis Basting 42 herself, who as a leader in the field sees their writings as very valuable. TimeSlips, a program she developed, is an innovative method of group story-telling by seniors with dementia. In the training materials for the program, she writes: Creativity is: adding something new to the world, how we know ourselves, how we grow ourselves, how we connect to others ... through creative expression, we share ourselves and connect to others. Creative expression is importantfor everyone, but it is even more importantfor those with dementiafor whom other avenues ofself-expression can be severely limited” (p. 8) Davis Basting’s definition covers just about all the key elements discussed so far on creativity by other scholars in the field of creativity research. However, for a definition that embraces dementia more closely, I suggest adding a few more key elements to her definition: Creativity in the context of dementia adds something new and different to the world whether through intrinsic self-exploration as an individual, or sharing creative expression through interaction with others. The creative process is demonstrated through creative thinking and imagination in everyday living and may or may not result in a product. Through creativity, people with dementia could (can) enjoy meaningful, satisfying and (at times) unpredictable experiences that may last for only a very short while or as long as memory allows it. Why Creativity and Creative Expression Are Important Based on this literature review ,inquiry in the field of creativity and dementia provides some evidence that support what anecdotal observations have claimed for a long time — that when given meaningful opportunities and encouragement, seniors can express themselves creatively until they reach the advanced stages of the disease, in spite of their physical and cognitive limitations. Providing an outlet for creative expression gives seniors with dementia an opportunity to be heard and to be valued. Creative expression is a general term that includes visual and performing arts activities, verbal and written expression, interpersonal communication and forms of self-actualization. We know from experience that through creative expression activities we can communicate with seniors with dementia. We listen, respond and interact with them through these activities. In this way we can learn about the seniors’ past life, which may include their ethnic background, occupation, hobbies and family. We can learn to respect their world, treat them with dignity, and start to have a positive influence on their quality of life. How Seniors with Dementia Experience Everyday Creativity within the Aging Process Opportunities for engaging in creative expression are numerous and they vary from visual and performing arts such as painting, listening and making music, dancing, singing and reminiscing to activities in daily life such as cooking, dressing, planning and gardening. The main question that arises is which opportunities are appropriate when we interact with seniors with dementia and what are the environmental circumstances that affect them. The explore the main question concerning changes associated with aging and dementia I turned to a theoretical model in gerontology that combined the biological, psychological and social aspects of aging. This theoretical model helped “explain why we do what we do and may alert us to some of the currently unforeseen implications of unselfconscious assumptions about age. It may also provide conceptual tools to interpret complex events and critically evaluate the current state of aging.” (Biggs, Lowenstein & Hendricks, 2003). Age-related changes in physiological, cognitive and social aspects take place in several domains. The interrelationship of the changes is supported by numerous researchers (Davis Basting 2003, Agronin, 2004; Dannifer & Perlinutter, 1990; Schneider & Pichora-Fuller, 2000; Staudinger, 1999; Stuart-Hamilton, 2000; Teague, McGhee, Rosenthal and Kearns, 1997). For example, Staudinger states that “to understand human life, we need to study thinking, wanting, feeling, and doing conjointly ... In fact, it may be exactly this combination of an elementaristic and holistic approach that makes room for new insights into psychological functioning” (p. 352). Biological, psychological and social aspects of 43 aging “do not occur independently of each other ... changes in the physical state of the body (and the brain in particular) can have profound effects upon psychological functioning”, as Stuart-Hamilton (2000, p.43) states in his publication, The Psychology ofAgeing. Stuart-Hamilton is a professor of psychology at the University College in Worcester in the UK. Staudinger and Davis Basting focus on changes that take place in each domain that affects creative expression abilities and opportunities for engaging in creative expression in the older population from normal aging through to aging persons with dementia. This population of older people, from the age of 65 to 100 years and over, is diverse in age, health and abilities. Growing older and experiencing physiological decline does not necessarily result in diseases and/or in cognitive and physical impairment that stem from a medical condition. It is more appropriate to talk in terms of mild decline in normal aging rather than in terms of significant impairments that can be diagnosed as cognitive disorder (Agronin, 2004, Osterweil, Brummel-Smith, Beck, 2001). Researchers like Schneider and Piehora-Fuller (2000) and Lindenberger and Baltes (1994) indicate that some deterioration in memory functioning such as inattention, processing speed and accuracy may occur, but the overall intellectual function is intact. To support a biopsychosocial model, we draw information from existing literature relevant to aging and dementia with a specific focus on its relevance to creative expression activities. Case studies from the literature will be drawn for support wherever possible. However, due to the lack of appropriate empirical studies that make specific connection between practical manifestations of creative expression, dementia and the biopsychosocial model, I will turn to the closest qualitative studies of researchers like Policastro and Gardner (1999). Both Policastro and Gardner came to the conclusion that psychometric standardized testing failed to fit everybody’s abilities, especially those of exceptional creative individuals. Policastro and Gardner also struggle with the difficulty of how to approach creativity studies. Although this explanation could belong at the beginning of this paper, it has its special place in this section. Because of its relevance to this question, I will rely mainly on their work. Policatsto and Gardner developed a new cumulative approach to creativity study, which was based on a progression of steps ranging from phenomenology, the study of known creative individuals, to a search for emerging patterns in comparison with other similar individuals. They accumulated a large database that allowed more patterns to emerge and contributed to generalization and explanation for deviations. Age related changes do not have to be associated with cognitive and physiological impairments. There are always older individuals who enjoy good health until very late in life, who use everyday creativity to adapt to the changes in their lives. A good example of creative adaptation is the well-known choreographer, Twyla Tharp, (2003) age 62, who appropriately named her autobiography, The Creative Habit: Learn it and Use itfor L/è. Twyla Tharp represents what is known in the gerontology literature as ‘successful aging’ (Fisher & Specht, 1999). Gene Cohen’s (2000) book, The Creative Age, is full of examples of people he met during his 30 years’ working with elderly patients as well as a rich selection of stories about well-known seniors from Mother Teresa, who received a Nobel Peace Prize at age 87, to Jacques Cousteau, the French oceanographer, who popularized the study of the ocean environment and worked until his death at age 87. Stories about such exceptional individuals are the data usually collected in qualitative research that may also promote understanding of everyday creativity (Policastro & Gardner, 1999). Although not tested in any systematic way, personal anecdotal stories, which are similar to Cohen’s qualitative descriptions, can help delineate many of the questions that propelled this research topic on creativity and dementia. Ignoring this practical experience will only mask a world that exists in dementia care and may stifle reality for thousands of persons who could benefit from being acknowledged while their cases only later contribute towards more rigorous scientific research. The anecdotal examples help to identify a problem, and build towards a theory that needs to be tested. However, I realize they may simply present fascinating snapshots, moments in time rather than the whole picture. Their use is not intended to provide empirical evidence except as individual cases, which limits their generalization. 44 Although most of us experience aging, it is still shrouded in scientific mystery. Most people refer to aging from a biological perspective. Dr. Gene Cohen, Professor of Health Care Sciences and of Psychiatry at the George Washington University, explains the process of aging as “a simple case of wear and tear ... an internal erosion that weakens cells, organs, and organ systems from head to toe, limiting their functioning” (p. 43). Stuart-Hamilton (2000) lists several theories of aging from “programmed theory of ageing (i.e. that cell death is in effect planned)” to an “autoimmune theory of ageing ... that ageing may be attributable to faults in the body’s immune system” (p. 24). Defining aging is almost as difficult as defining creativity. Aging is a word that describes a process that takes place in several domains. As in creativity, aging does not have “one single reliable measure” (Stuart-Hamilton, 2000). For most people aging is defined by its social construct, which is marked by retirement and the so-called typical behavior that a specific society expects of its aging people (Baltes and Reese, 1984). “Dementia refers to the development of multiple cognitive or intellectual deficits that involve memory impairment of new or previously learned information and one or more of the following disturbances: 1. Aphasia, or language disturbances. 2. Apraxia, or impairment in carrying out skilled motor activities despite intact motor function. 3. Agnosia, or deficits in recognizing familiar persons or objects despite intact sensory function. 4. Executive dysfunction, or impairment in planning, initiating, organizing, and abstract reasoning” (Agronin, 2004, p. 2- 3; The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM IV TR). Dementia is divided into seven subtypes that include over 72 brain diseases. The seven subtypes are: 1. Alzheimer’s type, 2. Vascular dementia, 3. Viral dementia, head trauma, Parkinson’s disease, Huntington disease, Pick disease, Creutzfeldt-Jacob disease, 4. Due to a general medical condition, 5. Due to substance abuse, 6. Due to multiple etiologies, 7. Unspecified dementia. Of the dementia diseases, Alzheimer’s is the most common type, accounting for 50% to 70% of all dementias, while vascular dementia accounts for more than 20%. Causes for Alzheimer’s disease are still being investigated. Recent research points towards two contributing factors to the disease: “extra neuronal deposition of I—amyloid and intraneuronal destabilizing of tau protein” causing plaque formation, which destroys neurons in the brain and induces inflammation that causes further damage to the cells. Damage to the areas of the entorhinal cortex and the hippocampus causes impairments to short-term memory in early symptoms of the disease. (Agronin, 2004, p. 72). Agronin, Director of Mental Health Services, at Miami Jewish Home and Hospital for the Aged, reports that some people may have more than one type of dementia. It is important to diagnose the type of dementia, since it may be of a reversible type. Risks factors are associated with “advancing age, menopause, brain injury, lower education, and the presence of the apolipoprotein E4 (APOE4) genetic allele” (p. 72). Physiological Changes Associated with Aging and Dementia Physiological age-related changes relevant to creative expression abilities take place in the nervous, sensory, cardiovascular, respiratory, skeletal, and muscular systems. All systems are interconnected and when one system fails, it affects the other systems as well (Teague,, McGhee, Rosenthal and Kearns, 1997). The nervous system and the sensory processes in normal aging play a role in regulating and integrating information and in internal communication (Deck & Asmundson, 1998). The nervous system is divided into the central (CNS) and peripheral (PNS) nervous systems. “The CNS consists of the brain and the spinal cord, while the PNS consists of the neurons connecting the CNS to the rest of the body” (Stuart-Hamilton, 2000, p.3’7) An age-related decrease in blood flow to the braift and to the nervous system may contribute to the following changes: a) “Tremors, slowed reaction time, short-term memory deficits, personality changes and depression” (Dudek, 1993, P. 326). “Reaction times become slower and the velocity of nerve conduction slows by 10 to 15% by age 70” (Spirduso, 1975, p. 435), b) Slowing in speed of information transmission, c) Reduced functioning of autonomic nervous system, d) Sleep-related 45 changes, e) Aging eye - “The lens undergoes a yellowing and, in some cases, lens opacity occurs (cataracts). The iris does not open as much as a younger person (Heath, 1993). Loss in visual acuity, “Ability to see in low light”, “distinguish color intensities and depth perception” (Dudek, 1993, P. 326), f) Loss of hearing - “Mechanical and neurological changes” impact the auditory system and lead to a “decrease in sound discrimination” (Heath, 1993), g) Loss of balance, h) Olfaction changes - lead to a decreased ability to smell, i) Decrease in taste sensation (Rawson, 2003). To express ourselves creatively we rely on the senses that allow us to see, hear, taste, smell and touch. Through these senses we receive information from the world around us; we then process the information in the brain in combination with our accumulated knowledge, based on memory and life experience (Coren, Ward & Enns, 1999). If our nervous system is impaired, so is our communication with the world outside. It will take longer to process information and longer to react to it. Missed information may cause confusion and decreased self-esteem; it may contribute toself-imposed isolation, loneliness, mood swings, anxiety, anger and aggravation (Una Holden, 1995). It is important to note that creative expression abilities may continue to function internally in spite of physical limitations. However, those abilities need the opportunity to be expressed, recognized, validated and appreciated. If the opportunities are not provided, those physical limitations may become mental problems, which in turn may result in further physical deterioration. This cycle needs to be broken in order to provide opportunities for healing of the mind and spirit and for creativity to continue to survive (Tiki, 2000).Davis Basting’s definition of creativity underscores how important creative expression can be for seniors with dementia if they are to continue to maintain cognitive and social contact with others. Age-related visual impairment can be most noticeable when dedicated artists experience changes in the style of their artwork late in their career. The normal aging population, who may not be engaged in the visual arts, may never notice some changes in their visual abilities. Following the rationale of Policastro and Gardner (1999) and their cumulative approach to research in creativity, we may learn about the exceptional abilities of well known artists and through comparative studies reach an understanding of what is normative and what is not and apply it to people with everyday creativity. There is a long standing debate in the art world as to what constitutes a change in artistic style — is it due to an artistic decision, made from free choice or is the change due to physical, cognitive and perceptual limitations? The debate over de Kooning’s artwork in later life is a good example. After being diagnosed with Alzheimer’s, he continued to produce a large body of work that was exhibited and analyzed with some of these questions in mind. Perhaps, such artists were aware of their limitations and found satisfactory ways of adapting to them. We have some clarification that artists suffer from visual impairment in Marmor and Ravin’s book, The Eye ofthe Artist (1997). In it, Monet is quoted as commenting on his painting of water lilies: IfI regained my sense ofcolor in the large canvases I’ve just shown you, it is because I have adapted my working methods to my eyesight and because most ofthe time I have laid the color down haphazardly, on the one hand trusting solely to the labels on my tubes ofpaint and, on the other hand, to force ofhabit, to the way in which I have always laid out my materials on my palette. (p. 248) Monet suffered from cataracts, where the “lens becomes so sufficiently opaque that vision is compromised” (page 2 1-22). Cataracts also contribute to a “progressively more yellow world” (Marmor & Ravin, 1997, p. 21-22) and, as a result, may alter the colors of the art produced. As Marmor & Ravin state, “What cannot be seen cannot be matched and therefore cannot be made” (p. 30). Other well-known artists may have suffered from visual impairment, including El Greco from astigmatism, when “images are focused more strongly in one direction than another” (p. 16), Edgar Degas from blindness, and Georgia O’Keeffe from blurred vision. O’Keefe suffered from macular “degeneration of the central part of the retina” which can cause “images (to become) hazy, fragmented and distorted” (p. 216). Regardless of the other types of impairment, presbyopia, an optical age-related problem that affects nearly everyone, can change how we see objects and how we draw them. In presbyopia, the “lens becomes less elastic, and, as a result, we lose the ability to focus over the whole range from infinity to near” (Marmor & Ravin, p. 46 16-17). Another age-related impairment is the diminishing ability to pay attention to fine details and a “decline in contrast sensitivity” (p. 30). As the pupil decreases in size, so does the amount of light absorbed by the eye, decreasing the ability to distinguish detailed images against their background (p. 29). Older people may experience higher threshold sensitivities to “light and movement and color discrimination” (Coren, Ward & Enns, 1999). Understanding aged-related visual impairment has significant implications for how art topics, art supplies, educational materials and studio arrangements should be considered when presented to older people. More specifically, visual information may need to be less detailed, high in contrast, appropriately task lighted, located at eye level, whether for a sitting or standing person, and presented at an appropriate distance from the eye. Other solutions may be as simple as providing a pair of glasses, or medical intervention. Adults over the age of 80 run the risk of developing dementia-related impairments in addition to the normal age-relatcd decrease in abilities. A person with dementia may have the mechanism of seeing intact but suffer impairment to the perception system, which reduces the person’s ability to recognize the objects they see. To make matters worse, if parts of the diseased brain affect memory, they also affect their ability to recognize objects from memory. This explains why some seniors with dementia cannot identify objects in front of them and have difficulty drawing them, or — more amazingly, they are able to draw the objects but fail to recognize what they have just drawn. This phenomena is described in Margaret Livingstone’s book, Vision and Art (2002). Livingstone is a Professor of Neurobiology at Harvard Medical School. She quotes a stroke patient saying to his doctor: “I can see the eyes, nose, and mouth quite clearly, but they just don’t add up ...“ (p. 64). Stroke patients may exhibit similar symptoms to dementia, but unlike people with dementia, their condition may improve as time passes. Strokes also account for vascular dementia, the second most common form of dementia (Agronin, 2004). In addition to object and color identification, people with dementia may experience difficulties in depth perception. Our eyes allow us to see in two dimensions but the brain must convert the information into three dimensions. The conversion is automatic and is “happening well before conscious perception” (p. 101). Any disruption to the visual system in the brain diminishes the ability of a person with dementia to recognize spatial depth. In my work with seniors, I have seen seniors who did not select the colors of the objects they were looking at. For instance, one senior painted a tree all in one color, green, although a large variety of colors were available. Was it a deliberate decision not to bother changing the pens to reproduce the correct color of the object? Was it an artistic choice? Was it the loss of color recognition that caused this behaviour? Perhaps it was a mental condition or the age-related decrease in attention to details. In spite of reduced abilities, creativity finds multiple ways through which it can be expressed. Although the tree was drawn completely in green, the senior explained its shape and location on the drawing paper by stating that the apples were still green and so was the foliage that covered everything almost to the ground. This verbal explanation, which went along with the visual image, made the whole session very special and meaningful to the artist/senior with dementia and to the other participants who were amused by it. In another situation a senior with moderate dementia, who had been a well-known artist in the past, could paint richly colored pictures in an abstract style, but could not reproduce the objects displayed in front of her. Still, her need to stay engaged with the arts was fulfilled. Was she aware of her impairment? Did she consciously adjust her style of painting? Did she really see in her mind what she was drawing? Although she had lost her ability to recognize familiar objects and project them on to paper as she had in the past, she still maintained her technical ability to mix paints, select the right brush for the right task, hold the brush and apply the color in the most interesting and tasteful way. Although her artistic expression was affected by the dementia, her language abilities stayed almost intact. In searching for an explanation, Gardner (1982) is the only one I found who makes the connection between artistic abilities 47 and language and how they are manifested. Gardner reports the claims of other researchers who had similar experiences, although there is little evidence of more research in this direction. In his chapter on the breakdown of the mind, Gardner describes this interesting phenomena: • .painters with right-hemisphere disease — whose language has retained unaffected — often exhibit bizarre patterns in their paintings: they may neglect the left side ofthe canvas, they may distort the externalforms ofobjects, or they may portray emotionally bizarre or even repulsive subject matter. Apparently painting and linguistic capabilities can exist independently ofone another. (p. 274) Although the changes to the artwork may result in bizarre images, the main idea, suggested in the new definition of creativity and dementia I propose, is to continue to encourage creative expression as long as possible. According to Davis Basting, these bizarre images may be the only avenue left for self- expression and through it for connections to others. Hearing impairment affects 15% of all people over the age of 65, and about 75% of people over the age of 70 (Coren, Ward & Enns, 1999). Hearing loss may prevent a person from understanding speech (p. 494). A decrease in verbal communication may have a profound impact on the elderly. It may increase their feeling of isolation, and can even “result in psychiatric disturbances ... delusional thinking” (Teague et al., 1997). This observation is also supported by Weinstein (2003): “Untreated, hearing loss has significant social, cognitive, and emotional consequences” (p. 15). In hearing less the elderly are less exposed to external stimuli that could activate their memory and prompt the internal creative process. For example, Aldridge (1993), a professor of clinical research in the Faculty of Medicine at the University of Witten Herdecke in Germany, found that music therapy programs for seniors with dementia activates their memories. Hearing loss should not affect creative abilities that are not sound-based. “Fortunately, a variety of interventions and technologies are available to help older people overcome these communicative and psychological effects” (p. 15). In addition to hearing loss, the elderly run the risk of increased imbalance due to age-related changes to the inner ear. This change may contribute to “dizziness, instability, and falls” (p.15). Internal creative processes benefit from external stimuli, which in turn give birth to new ideas, renewed energy to explore and stay engaged with the world around us. In the case of hearing and creative expression abilities, we refer most often to music, speech, and the sounds we hear from the world around us, whether it is a barking dog or traffic noise. The question arises: What may the impact be for a person with dementia whose hearing impairment is not detected, or for whom hearing aids are not used all the time? The impact of hearing loss on creative expression abilities or the opportunities to be engaged in them depends very much on the person with dementia. Some people are affected less than others and the sounds of music may be more important to one person and not so important to another. The literature is rich in studies of people with dementia and their positive response to music, whether actively participating in music activity or becoming less agitated (Aldridge, 1994; Brown, Gotell, & Ekman, 2001; Bruscia, 1991; Carruth, 1997; Chavin, 2002; Gotell, Brown, & Ekman, 2002; Johnson, Cotman, Tasaki, & Shaw, 1998; Kneafsey, 1997; Mathews, Clair, & Kosloski, 2000; Olderog-Millard & Smith, 1989; Sambandham & Schirm, 1995). Amy Horowitz, M.S.W, in a peer reviewed article Depression and vision and hearing impairments in later life (2003, p. 36) found that “hearing-impaired older adults are approximately twice as likely as their nonimpaired counterparts to have clinically significant depressive symptoms” and that these symptoms of “sadness, loss of interest and/or pleasure, feelings of worthlessness or inappropriate guilt, loss of appetite, sleep disturbances, psychomotor agitation or retardation, fatigue or loss of energy, trouble thinking or concentrating, and thoughts of death. Hearing impairment may limit the selection of possible expression activities but adjustments can be made so that hearing impaired seniors with dementia can enjoy related creative activities. In addition to behavioural modification, listening to familiar music is another form of 48 auditory stimulation that is beneficial in autobiographical memory recall (Foster & Valentine, 2001). Recalled memory may provide opportunities for story telling, reminiscing and socializing — to be heard, to express and feel alive. Taste and smell are quite noticeable in age-related changes. “Odor sensitivity is greatly diminished, although the reduction is not uniform across all stimuli or individuals” (Cain & Stevens, 1989, in Coren, Ward & Enns, 1999. p. 494) In a test done by Schiffiman and Pasternak (1979), it was noted that elderly subjects could best distinguish fruity odors compared with other types of odors. In a test done by Stevens, Cain, and Demarque (1990), it was found that elderly people had a shorter span of odor memory compared with younger adults. In addition to smell reduction, the ability to taste is reduced as well. Schiffman (1977) reports that younger subjects are twice as accurate as the elderly in recognizing common foods in pureed form. Also, while seniors show a reduced sensitivity to touch, their sensitivity to pain remains (Coren et al., 1999). Although taste, smell and touch impairments are not considered as profound as impairments to seeing and hearing, they yet rob the older adults from experiencing fuily the world around them in comparison with a younger population. It is important to note that older people are at risk when taste, smell and touch are impaired, since they may be exposed to toxic substances, overlook important ingredients in their diet (Coren et al., 1999) or touch dangerous surfaces, which are too hot, cold or sharp. The literature revealed that impairments to taste, smell and touch reduce the sensitivity to external stimuli that might otherwise provide access to recall memories. As a consequence, a facilitator for creative expression activities needs to take into consideration that older adults, especially seniors with dementia, may need enhanced flavors, especially in salt and sugar (Coren, Ward & Enns, 1999), while engaged in creative cooking and baking. A facilitator needs to be aware of food products that may not evoke any reaction since they may appear tasteless to the senior. Exposing seniors to smells may remain unnoticed, unless the facilitator focuses on fruity smells. In a study by Larsson (2000) it was found that women perform better in olfactory tasks than do men. In addition, Pause, Ferstl, and Fehm-Wolfsdorf (1998) found that individuals with a high emotional level would excel in olfactory ability. These findings are important in understanding gender differences, personality traits and the need to accommodate creative expression activities that are meaningful by tapping into the strongest abilities still left to work with. In selecting objects to be touched by seniors, the facilitator may need to be aware that feather-like touches may not be noticeable and that extreme temperature and sharpness would need to be monitored for safety reasons. The cardiovascular system is based on the heart and blood vessels. Cardiovascular disease is common in old age and it increases as age progresses. At age 70, about 10% of the population have cardiovascular diseases and at age 85, the percentage rises to around 50% (Fahiander, Wahlin, Fastbom, Grut, Forsell and Hill., 2000). In addition to fatigue and hypertension, which is not an inevitable consequence of aging (Schulman & Gerstenblith, 1989), a study by Fahlander et al. (2000) found a relationship between signs of cardiovascular deficiency and cognitive performance in normal old age, which is “seen most clearly” (p. 259) in vascular dementia, especially in episodic memory and visual and spatial skills. Episodic memory is defined as “specific episodes in one’s life” (Reisberg, 2001, p. A4). We need to take into account the risk factors in increased physical activity and tailor the activities to the elderly, especially for cardiac patients (Schulman & Gerstenblith, 1989). The intensity level of physical activity needs to be taken into consideration, in consultation with the seniors’ healthcare providers. Although these activities should be taken with care, “regular physical activity and exercise can also assist older adults in enhancing their quality of life, improving their capacity for work and recreation, and altering their rate of decline in functional status” (Frontera & Evans, 1986). However, dementia does produce a decline over time in the seniors’ functional status and with it the opportunities to engage in various movement activities, such as dancing. If a senior with dementia also suffers from congestive heart failure, that condition may restrict the level of activity recommended for that person. Due to the direct relationship between cardiovascular deficiency and cognitive performance, high-risk individuals may need to be identified prior to an activity to make sure the activity is appropriate for their 49 energy level and cognitive ability. Creative expression activities may include physical work such as dancing, clapping, using drums, acting, painting large images that may require standing, gardening and planting and so on. The respiratory system “provides oxygen to all cells in the body as well as serving to excrete carbon dioxide, a waste product of metabolism” (Deck, 1998, p. 63). Any disturbances to the oxygen supply may cause heart problems and pneumonia, which in turn reduce the level of activity of the elderly. Care should be given at any age and at any place to protect against environmental toxins. Elderly people run the risk of emphysema and pneumonia. They are also very vulnerable to air pollutants (Spence, 1989). Respiratory problems may restrict the senior from taking part in some of the creative expression activities. Art products should be screened for their toxicity and for their use; they may pose problems if taken into the mouth. Creative abilities are not necessarily affected unless the senior is too frail to take part in any activity. The skeletal system supports “all the soft tissues of the body, it protects internal organs, it stores vital minerals, and it plays an integral role in the formation of blood cells.” (Deck, 1998, p. 73). Changes to this system have a “profound effect on the life style of the elderly” (p. 73). Osteoporosis is a “skeletal disease characterized by low bone mass and microarchitectural deterioration of bone tissue, with consequent increase in bone fragility and susceptibility to fracture”, which are common in the “hip, spine and wrist” (Kendler, 1996, p. 262). Symptoms of impairment to the skeletal system and osteoporosis contribute to stiffjoints, pain, restricted movements, frailty and deformity. Other impairments are due to the deterioration of cartilage, changes to the spine, and rheumatoid arthritis. Although impairments to the skeletal system are not connected to cognitive abilities or creative abilities, they have the potential to restrict mobility and cause significant pain that would prevent a person from fully enjoying creative expression activities. A combination of carefully planned programs and appropriate therapeutic environments will contribute to a safer environment. Some thought is needed to address the kind of art supplies, location of the art supplies in relation to the artist, drawing position, whether sitting or standing. Many frail elderly people have difficulty holding brushes, standing up at their easels, bending, raising their anns and lifting. Elderly people fall more often and are more likely to break their fragile bones (Newton, 2003). On many occasions, I adjusted easels, improvised work surfaces, suggested painting with fingers instead of holding a brush, and ripping paper instead of using scissors to avoid putting pressure on finger joints. This system is closely associated with the skeletal system and is important to the “functional ability and lifestyle of the elderly individual” (Deck, 1998, p. 79; Spence, 1989; Heath, 1993). Physical activity is necessary for successful aging and can bring “physiological and psychological benefits” (p. 79). Aging contributes to loss of muscle mass; 20% of muscle strength is lost by the age of 65; this loss can also be attributed to “disuse” or inactivity and which contributes to significant limitations in flexibility (Heath, 1993). Deck (1998) comments that “boredom, inactivity, and expectations of illness contribute substantially to the decline of physical capacity in elderly individuals” (p. 79). Impairments to the muscular system may increase the resistance of seniors to participate in creative expression activity with more physical involvement. Working with seniors with dementia, the author noticed how pain associated with muscular and skeletal impairments discourages older people from wanting to move. Combined with symptoms of dementia, physical movement would keep these seniors from participating in creative expression activities. Cognitive Changes Associated with Aging and Dementia To understand “how the brain works, what is involved in various mental processes, and how the brain makes these achievements and processes possible” (Reisberg, 2001, p. 2), we need to combine knowledge from cognitive psychology and cognitive neuroscience. However, our focus here is on intellectual functioning and how it manifests itself in cognitive functioning or, more specifically, in creative expression abilities. Neuroscience will be mentioned briefly only to clarify how it relates to dementia and 50 the parts of the brain responsible for impaired behaviour in an attempt to identifS’ why certain behaviour and abilities are the way they are. Cognitive neuroscience is associated with the medical model of care based on illness. It is criticized by those who wish to dissociate their work from it and focus on the person inside the disease (Kitwood, 1992). But no matter what approach is adopted in providing care, the process needs to be inclusive, comprehensive and realistic to respond to seniors with dementia and their many needs. To address the issue of cognition and creative expression abilities we need to delve into the strong relationship that exists between the cognitive system (intellectual functioning) and the perceptual system: “the conscious experience of objects and object relationships” (Coren, Ward & Enns, 1999, p. 571). Since creative expression touches on both systems of cognitive functions and perception, we will concentrate on an in-depth review chapter by Schneider and Pichora-Fuller (2000). In the literature on cognition and perception in aging, this study is remarkable for its depth, breadth and comprehensiveness. It supports our need to tie together several fields in understanding how elderly people react to external stimuli, and then express themselves creatively. In explaining the processes that contribute to learning, knowing and expressing, Schneider and Pichora—Fuller (2000) write: The coexistence of these two kinds ofage-related changes raises important questions about the relationship between early and later stages in information processing, that is, between perceptual and cognitive processes, which have now been shown to have “a powerful inter-systemic connection” (Baltes & Lindenberger, 1997, p. 16). In this chapter, we argue that perception and cognition must be considered as parts ofan integrated system fwe are to understand how they are affected by age. (p. 156) As reviewed by Schneider and Pichora-Fuller, Lindenberger and Baltes (1994) found a strong correlation between changes in hearing and the “speed of processing in the older adult” (p. 162). Schneider and Pichora-Fuller concluded that “anatomical and physiological changes would have multiple consequences for perceptual function” (p. 173) The main concept of their theory as it applies to the link between cognition and perception is explained very clearly in the following: “... age leads to sensory organ deterioration that affects the kind and quality of information delivered by the perceptual system to the cognitive system. Ultimately, a reduction in both the quality and quantity ofinput would result in cognitive deterioration due to atrophy. “ (p. 203) In their conclusion, Schneider and Pichora-Fuller recognize the importance of testing the perceptual status when doing cognitive research with the elderly. By doing so, the researcher can define the perceptual loss and its effects on cognitive abilities. Schneider and Pichora-Fuller and other researchers found evidence of degeneration in normal aging. It affected auditory functions: in detecting signals in noise; visual acuity: the ability of the eye to resolve details (Coren et al., 1999) and contrast sensitivity: the difference between light and dark (Coren et al., 1999) occurring in normal aging. The following description aims to connect the location of dementia in the brain, as it affects brain functions, with cognitive and perceptual impairments that determine the level of creative expression abilities. The information on neurological and cognitive impairment is based in large part on a recent book, Dementia: Practical Guides in Psychiatry (2004) by Dr. Marc Agronin. Agronin brings together issues that pertain to dementia disorders and dementia care. He successfully combines various approaches to dementia care, including the Kitwood approach, which emphasizes the person inside the medical condition. He responds to the mounting criticism from gerontologists and social workers regarding the way seniors with dementia were treated and still are to a large degree. Recent neurological research 51 findings from Ropper and Adams (2001) and Nutt & Weizman (2001) are described in Agronin’s publication: 1. Damage to the Frontal Lobe can result in: impaired executive functioning, impaired immediate memory, slowed cognitive processing, slowed activity, poor concentration and attention, impairments in judgment, insight and behavioral control, personality changes, apathy, preservation of words, sounds or behaviors, disinhibited reflexes, impulsivity, aphasia, language disturbances, and impaired task-follow- through (Agronin, 2004). Impaired attention translates into decreased alertness, being distracted, not being able to separate relevant from irrelevant information, not being able to handle multiple sources of information at the same time (Mcdowd & Shaw, 2000). Anatomical changes in the frontal lobe due to dementia can impair the processing of information and the ability to react to it. Interestingly, the same damage may reduce barriers to behaviour control that result in encouraging artistic expression. Dr. Bruce Miller, of the Department of Neurology and Psychiatry, University of California at San Francisco School of Medicine, discovered with his colleagues, Cummings, Mishkin, Boone, Prince and Ponton (1998) and Ponton, Benson, Cummings and Mean (1996), that patients with frontotemporal dementia (FTD) “developed new artistic skills” and “became accomplished painters after the appearance of frontotemporal dementia. Three patients in a study group improved their skills during the onset of the disease and through the middle stages of it. One patient in particular, with no interest in the visual arts in the past, continued to paint for about 10 years from the time of the diagnosis with increased “precision and detail”. He used bright colours and painted his first paintings fast, slowing later and paying more attention to detail. As his disease progressed he started to draw “bizarre doll-like figures.” These figures became an important key in examining artwork done by seniors with dementia. Gardner (1982) also brings up a similar description of artwork done by brain-damaged patients. 2. Damage to the Occipital Lobe may cause: visual agnosias, deficits in recognizing people and objects, reading impairments, cuts in the visual field, illusions and hallucinations of shapes and colors, visual inattention (Agronin, 2004). Damage to the occipital lobe reduces the ability to process incoming information and, therefore, responses to the external stimuli may not always be appropriate. However, illusions and hallucinations may become opportunities for creative expression, when the person with dementia cooperates and the facilitator is aware of the situation. 3. Damage to the left hemisphere of the Panetal Lobe, the dominant side, may cause: impairment in reading and writing, right—left confusion, impaired tactile recognition. Damage to this part of the brain will reduce the ability to respond to stimulus through touch, poem writing, story reading and writing, and instructions that use left-right orientation. 4. Damage to the right hemisphere of the Parietal Lobe, the nondominant side, may cause: visuospatial and visuoconstructional impairment and neglect of the left side. These impairments more profoundly affect the ability for expression in visual arts. 5. Damage to the Temporal Lobe may cause: impaired memory and hearing, changes to emotional and behavioral expression, apathy, and oral exploratory behaviors. Summary Researchers like Gardner, Miller, and Schneider and Pichora-Fuller provide the groundwork for neurological understanding that translates into practical information about what to expect when interacting with seniors with dementia who engage in creative expression activities. Dr. Miller’s patients were diagnosed using magnetic resonance imaging (MR1) to veri1y the degree of atrophy in the brain and the location of the damage. It would be beneficial if all dementia patients had this procedure, however, it is costly and most dementia patients do not undergo such procedures. In the absence of this diagnostic tool, artwork could become an inexpensive substitute with the potential of explaining some behaviours. 52 Social Cognition, Aging and Dementia Social cognition in aging is defined by self-identity, social interaction and social perception (Hess, & Blanchard-Fields, 1999). Ha.zan (1994) describes aging as: Knowledge about ageing is peculiar; alongside matters oflfe and death it embraces notions about dependency and autonomy, body and soul, and paradoxes emanatingfrom irreconcilable tensions between images ofthe old, their own will and desires, and the facilities offered to them. (p. 1) Hazan sees people in old age trapped socially by the language of separation, by a culture that separates them, by their image as perceived by the rest of society, and by their own self-image. Further, he says that this separation is “a form of social segregation which defines the aged as non-humans and humans as non-aged ... detached from their previous lives and from social frameworks of the non-aged” (p. 18). He also criticizes the notion that older people need to adapt and “conform to the demands of society” (p. 21). The whole socio-cultural construct seems to be afflicted by fear and anxiety of old age, where old age is perceived as a social problem that needs to be resolved. Hazan sees the concept of death as the main divider between “those on its verge and those desperate to avoid it” (p. 5). For him, words such as “aged, old, older person, senior citizens, elders, old age pensioners — all serve to stigmatize the aged” (p. 13). The recent popular concept of ‘successful aging’ implies that older people need to be instructed on how to live their lives to the fullest. Yet society dictates when a person should retire from the work force. Entering retirement is based on a bureaucratic decision, which is driven by economic reasons that favor younger people. The decision to retire affects older people economically, “their relationship to others, their self image” (p. 16). Overnight, retired people lose their status as viable and contributing members of society. Aging becomes equivalent to illness, dependency, powerlessness, dehumanization, eventually leading to institutionalization away from all that was familiar (Hazan, 1994). Treating older people in a discriminatory way was named “ageism” (Cohen, 2001, Levy, 2001; Palmore, 2001). Cohen (2001) quotes Butler (1975) as saying: Ageism can be seen as a process ofsystematic stereotyping ofand discrimination against people because they are old, just as racism and sexism accomplish this with skin color and gender. Oldpeople are categorized as senile, rigid in thought and manner, old- fashioned in morality and skills.... Ageism allows the younger generation to see older people as differentfrom themselves; thus they subtly cease to identfj’ with their elders as human beings. (p. 576) Creative expression abilities are based most strongly on “the interface between personality and intelligence” (Staudinger et al., 1997). Those creative traits may or may not be expressed through social interaction and a quest for self-identity. Older people may refrain from expressing themselves if the society they live in refuses to support them emotionally. According to Hazan (1994) older people suffer particularly from stereotypes that are socially constructed when they are treated as a homogeneous group without regard to individual differences. Staudinger (1999) stresses the importance of the individual and their life experiences. These individuals have a past and make plans for the future. In her research, which is supported by Lindenberger and Baltes (1994), Staudinger found that when older adults are engaged in life review and life planning, they “do not show the usual declines identified in cognitive functioning of the mechanic type ... Rather, stability and sometimes increases in performances are observed” (p.351). Hazan comments on how society views aging and creativity, explaining the stereotypes that brand ordinary old people as “incapable of creativity, of making progress, of starting afresh” (p. 28). He continues “only in art and the domain of the spirit are they licensed to continue to be creative” (p.28). Ryan, Hummert and Boich (1995) share the opinion of Hazan and Staudinger that older people become stereotyped as incompetent and dependent (p. 146). In 1986 Ryan introduced the Communication Predicament of Aging, which demonstrated how caregivers change their verbal and non-verbal 53 communication with an elderly person. This model presents several stages from the first encounter with an older person to changes in speech and behaviour of a patronizing nature, which reinforces stereotyping and causes the older person to avoid interaction. To support this cycle, Smith & Van Der Meer, in Runco and Richards (1997), point out that “older people, because of negative social stereotypes about aging, often become isolated from their own emotions and filled with doubts about themselves, all of this being detrimental to creative functioning” (p. 352). McMullin and Marshall (2001) suggest that age discrimination is widespread in western societies and that it “occurs within families and households, government agencies, healthcare systems and wage labor markets” (p. 112). The relevant finding is that older people are “denied resources and opportunities that others enjoy” (Bytheway, 1995, p. 14). It seems that these research findings of western social attitudes towards normal aging become more accentuated with older people, who are sick with dementia. Aronson (1999) makes it very clear that older people, who become sick and move from being independent and in relatively good health to total dependency, are at the mercy of others for care. Older people with attributes that signal their potential dependency —for example, being ill or disabled, poor, orfemale — are especially exposed to these oppressive practices and are, coincidentally, those most likely to enter the orbit oflong-term care, thus, ofsocial workers. ... These organizations and the cumulative practices ofservice providers within them play critical parts in both distributing resources and in shaping images and vocabularies about older citizens ‘ entitlements and the signflcance oftheir needs. (p. 47) Aronson joins the voices of other researchers in the social sciences (Corley, 1999; Cox & Parsons, 1999; Fulimer, Shenk and Eastwood, 1999; Hancock, 1990; Hooeyman & Gonyea, 1999; Kitwood, 1992; Kitwood, 1997; Neysmith, 1999; Sabat & Harre, 1990) who view their work with older people from a postmodern and feminist perspective that focuses on the social construct and issues of empowerment. This viewpoint opens the door to criticism of some practices in dementia care. As Tilki (2000) observes: The damage caused by not enabling older people to occupy their time in a meaningful, enjoyable and challenging way was dramatically underestimated (Goodwin, 1988). Recreation according to Goodwin was not a luxury, but a starting pointfor excitement, meaningful diversion, adaptation and creative activity. Crump (1991) went sofar as to suggest that the absence ofmeaningful activity could be interpreted as abuse. (p. 113) The following is a conceptual framework (fig. 3) that illustrates how therapeutic environments may bring positive changes in behaviour and self-image when the medical model of treating seniors with dementia is enhanced with the person-centred model as identified in the field of gerontology. Although the reduced abilities are a fact, responsive environments may help alleviate feelings of isolation and breakdown in communication. 54 L From a Biomedical Model to a Person-Centred Model Within the Context of Creative Expression Activities • Understand patterns of behaviour and the causes for problematic a behaviour to reduces anger and agitation. Provide opportunities for decision-makmg as long as possible, however small: art projects, meal preparation, moving objects, collecting things. Therapeutic Environment • Positive change in behaviour • Promotes independence preservation of the self and dignity • Improves socialization and communication. Figure 3: The Conceptual Framework of the Person-Centered Model versus Medical Model ‘Jr Is it an opportunity opportunity person-centred model supporting and adjusting to gradual deficits • Release of inhibition may encourage creative abilities • Long-term memory may stay intact. Opportunity for: Life review, reminiscing & reconnecting with loved ones • Use of non-verbal activities: music- making and listening, art-making and viewing, use of tactile activities. Encourage seniors to relive times still remembered. F’ • Reduced memory & emotional control • Loss of short-term memory • Reduced speech and language control • Loss of time awareness • Free movement indoor & outdoor to maintain muscle strength as long as possible • Provide meaningful activities and spots of interest along the wandering routes. • Continue to work with remaining abilities, assist and support as needed. -I0- • Restrained with wheelchairs, geriatric chair & bed rails to control perceived problematic behaviour leads to loss of muscle tone • Wandering • Reduced range of movements • Loss of reasoning leads to loss of the right to control personal life, to frustration, agitation, & problematic behaviour Non-responsive environment • Institutional feel contributes to confusion, agitation, isolation, breakdown in communication. I 55 CHAPTER III: METHODS Qualitative Research Manning, Algozzine and Antonak (2003) define qualitative research as: “Inquiry designed to discover meaning by intensively studying representative cases in natural settings using analytical approaches” (p. 56). John Creswell (1994) explains that in qualitative research: researchers interact with those they study, whether this interaction assumes the form ofliving with or observing informants over a prolongedperiod oftime, or actual collaboration. In short, the researcher tries to minimize the distance between him- or herselfand those being researched. (p. 6) According to Creswell, key issues in qualitative research are: a) the admission and recognition of the researcher’s biases that are embedded in his or her woridview and life experiences, b) the qualitative researcher waits for categories to emerge from the process of inquiry that may lead to patterns or theories, c) qualitative researchers take the risk of including possible ambiguity in their research with unknown variables. According to Roger Grainger (1999), qualitative research “indicates such a wide field of enquiry within a single project, it involves a great deal of organization and the ability to orchestrate its effects so as to present its conclusions as powerfully and convincingly as possible” (p. 38). He also sees the qualitative research role in describing situations that are difficult or even impossible to measure. For example “things that are concerned with the quality of human relationships and what happens between people. It concerns itself primarily with investigating how things happen rather than trying to be scientifically accurate about why they do” (p. 40). Selecting Qualitative Inquiry The decision to use qualitative inquiry was made deliberately to focus on detailed descriptions and address research questions that allow for new understandings rich in information. As Springgay, Irwin and Wilson Kind (2005) noted in their essay: It is often an anxious life, where the a/r/tographer is unable to come to conclusions or to settle into a linear pattern of inquiry. Instead there is a nervousness; a reverberation within the excess ofthe doublingprocess. Living inquiry refuses absolutes, rather it engages with a continual process ofnot-knowing, ofsearchingfor meaning that is dfjIcult and in tension. Tension that is nervous, agitated, and un/predictable. (p. 5) As Irwin and Springgay (2005) explain: Whereas manyforms ofresearch are concerned with reporting knowledge that already exists or finding knowledge that needs to be uncovered, action research and a/r/tography are concerned with creating the circumstances to produce knowledge and understanding through inquiry laden processes. (p. 7) A/r/tography was selected as the overall methodology and philosophical approach to lead this inquiry. A/r/tography as a method helped me tackle the various components of the research questions; it fit my values, beliefs, experiential knowledge and goals. AIr/tography seeks knowledge through living inquiry by “creating the circumstances to produce knowledge and understanding” (Irwin & Springgay, 2005, p. 7). It draws the researcher into an intense, personal and interactive relationship with the topic being researched. Irwin and Springgay (2005) used Carson and Sumara’s explanation of action research and applied it to alr/tography in saying that interpretations of action research and alr/tography practices “. . . are 56 always in a state of becoming and can never be fixed into predetermined and static categories” (Carson & Sumara, 1997, P. xviii). A/r/tography calls on the artist inside the researcher to seek an understanding of self and the larger world through an artistic process. The researcher in a/r/tography acts as a facilitator who intentionally selects a situation in order to bring on social and/or political change with the help of concerned stakeholders. I acknowledge that working with seniors with dementia has its drawbacks, considering that they may not have the capacity for full blown participation in a traditional academic sense. However, this research proved that even with various levels of memory impairment, from mild memory impairment (MCI) to moderate dementia, seniors were capable of expressing their wants and ideas for a space to be creative in. Their participation was subtle in comparison to revolutionary and dramatic acts, yet their input was very significant in the world of dementia care, where changes are so small that, sometimes, an untrained eye may miss a brief moment of brilliance. Through the arts and the search for any meaningful gesture by the participants, a/r/tography helped bring out those precious moments that unfolded in between “language, images, materials, situations, space and time” (Irwin & Springgay, 2005, p.2). By documenting the responses of the participants through a/r/tography, I allowed the seniors with dementia to be heard, appreciated and to be included in the process of design. Air/tography A personaljourney. By using a/r/tography as a “living inquiry” which is explained as “visual and textual interpretations of lived experiences” (Springgay, Irwin, and Wilson Kind (2005, p. 5), I was able to devote the same level of attention to self-reflection as I did to the participants in the study. Ar/tography invites the researcher to become aware of his or her multiple roles through artistic and educational endeavors. A/r/tography also introduces an emerging qualitative method called relational inquiry and which is supported by researchers such as Gergen and Gergen (2000) in Denzin and Lincoln’s Handbook ofQualitative Research (2000). Gergen and Gergen describe relational inquiry as research based on relationship, as oppose to the traditional way of conducting research based on an individual approach. As our methodologies become increasingly sensitive to the relationship ofresearchers to their subjects as dialogical and co-constructive, the relationship ofresearchers to their audiences as interdependent, and the negotiation ofmeaning within any relationship as potentially ramifying outward into the society, individual agency ceases to be our major concern. We effectively create the reality ofrelational process. (p. 1042) Irwin and Springgay (2005) use relational inquiry within a/r/tography, which is based on multiple views as an educator/learner/artist/researcher. Architects struggled for ages to be recognized for their theoretical approach to design while doing their practice. A/r/tography and its understanding of relational inquiry fits perfectly with the process of designing in architecture. The three forms of knowing (theoria), doing (praxis), and making (poesis) which are fundamental concepts in a/r/tography (Irwin, 2004) are also the structural pillars of architecture. In the past architecture was perceived as a profession that was dominated and driven by a few politically and socially influential clients with very little or no input from the public as users. Structures were built in celebration and adoration of the developers as an expression of power. Architecture today is more liberal and exercises democratic approaches to hear and listen to the users. The architect of today assumes the role of a learner who is sensitive to the social, political and economic issues of the situation. Only then can the architect bring in the technical expertise required to create architecture just as the alr/tographers are expected to learn, change, understand and interpret (Irwin & Springgay, 2005). Each time I work on an architectural project I add another piece of information to my repertoire, not only from a building technology aspect, but by understanding the psychosocial aspects of the users. Each new awareness brings new ideas and new ideas turn into shapes, and forms and the cycle never ends. 57 It needs to be pointed out that architecture is not always about a real geographical place. Sometimes architecture is defined by the use imposed on the place. For example, a group of people may use the beach as a place to party and sleep. For that specific short time, the beach is transformed to contain the activity imposed on it. Irwin and Springgay allude to it by stating that the definition of what a “site” means “needs to be re-defined not through physical or local terms, [but] as a complex figure in the unstable relationship between location and identity” (2005, p. 12). As I approached this study, I thought it would be simple to explain the transitions I went through from my work in architecture to my work in gerontology. As I began to make sense of my recalled memories, I realized that I was dealing with a continuous transformation with multiple and overlapping processes that could not be contained easily in separate boxes with well-defined boundaries, starting at one date and ending at another. As I “opened” one area, I quickly discovered that I needed to turn to earlier memories to make sense of recent events in my life. I was compelled to go back and forth and unravel the meaning of what creative expression, architecture, research and dementia meant to me. In this case, the act of opening was of a personal nature; however, openings according to a/r/tography can be also applied in relationships between alr/tographers and the others they work with. As Irwin and Springgay suggest (2005, p. 19) “Another purpose of a!r/tography is to open up possibilities for alr/tographers as they give their attention to what is seen and known and what is not seen and not known”. Openings also refer to losses and discomforts (Springgay, Irwin & Wilson Kind, 2005, p. 9), as Wilson Kind refers to her own losses and difficulties in life. So are the losses seniors with dementia experience and the need to mend the environment to accommodate physical, mental and cognitive impairment. The process was not always easy or pleasant as I faced situations and asked questions about why things happened the way they did and where I was going with them. Through this process I found relevance in a/r/tography and in its six renderings: “contiguity, living inquiry, openings, metaphor/metonymy, reverberations and excess” (Springgay, Irwin & Wilson Kind, 2005, p. 1). These renderings explore the process of discovering new meanings in difficult situations due to the tension, ambiguity and resistance I encountered along the way. At various times I would compare this process of discovery to dance, the strokes of a brush, playing ping-pong, giving birth, writing a poem, designing a building, listening to music, having meaningful conversations — and working with seniors with dementia in the creative expression program I developed. In short, living life. I also thought how easy it would have been if I could express myself, metaphorically, in white colour. What do I mean by white colour and how does it relate to metaphor and metonymy in a/r/tography? Isaac Newton (1642-1727) discovered “that white light is broken by a prism into a full spectrum of colors” (Marmor & Ravin, 1997). Each colour represents different wavelengths and energies. It is one single phenomenon that combines many colours at the same time and produces a new colour, seemingly so pure and colourless that it presents a clean slate on which artistic activity can begin. Amazing. Although we now understand the mechanics of this phenomenon it still puzzles our minds. Going back to the multiple roles of the researcher/educator/artist/facilitator, we know it takes time to explain who we are through verbal and textual expression. Unlike the efficient presentation of white colour, our ability to perceive in one singular act who we are is limited. To make matters even more puzzling, the objects we think we see are really the light that is reflected back from them in combination with the way we perceive through our visual system. This activity of seeing and not seeing, even if we are aware of the phenomenon, creates duality and dichotomy, making us unsure and uneasy. It fits the understanding of alr/tography where, by displacing the self with white colour, we may clarify the position of multiple roles and the changes we go through while producing a new self, like the new white colour. Inquiry into renderings ofu/r/tography. My overarching goal in providing a creative expression program was to give an opportunity for growth, reflection, and discovery; in alr/tographic terms, to allow some renderings to play themselves out. While I was going through my own reflections, I was hoping the group of seniors with dementia would too. We were in this journey together, exploring the possibilities for new situations. Although one can never be sure of what to expect while working with these seniors, the uncertainties are constant —just like alr/tography itself— as a process of inquiry. Symptoms of the 58 medical condition keep shifting. There may be good days when the seniors are just as able as those with no dementia, or bad and difficult days when they can hardly concentrate or participate in any activity. Difficult days and moments such as this, when intertwined with my own uncertainties, produce situations that de Cosson (2002) calls “Aporia”. My own “Aporia.” Alex de Cosson (2002) explains Aporia as a place/concept of difficulty, a fluid entity in between places/ideas that is ever-changing, as the various players discover or rediscover the known and the unknown. Aporia is a process of making meaning in the context of a present moment. As I was preparing the outline for one of the selected sessions for the study on friendship, my own thoughts started to infiltrate my planning given the fact that I am Jewish. In exploring memories of the participants’ younger days, I was wondering where the seniors in Margaret Fulton came from originally. Were they involved in the war in Europe, were they victims, were they fighting with the allies or on the enemy’s side? I worried how it would impact my study and how I would react to the possibility that one of the seniors may have been a soldier in the German army fighting for his country. As it turned out there were no men in the group at Margaret Fulton and my anxiety subsided. This is my Aporia, as I try to come to terms with a past that has no words to explain what happened. The more I try to make sense of it, the more I get entangled in this sticky web — wanting to believe in the goodness of mankind and yet aware of the painful realization that mankind is capable of inflicting the most horrendous crimes on neighbours and friends, with no discrimination. Yet, regardless of their past, they are now old, frail with limited memory and in need of help. But so were my grandparents when they were killed. This is my Aporia, my private torment of making sense of this world as it relates to my work with seniors with dementia. Like the seniors, I may want to take refuge in the present and unlike them, I am still able to be selective as to what to remember. There is no question in my mind that some changes are taking place in my own perceptions of life as I work with these seniors. As Irwin (2005) describes the subtle changes that take place in her life when walking around the UBC Campus and enjoying a fall day: “Each image holds different meanings for me though they represent the same day and time period. Each image teaches me something fresh and alive through every new encounter. Each image was birthed as I was created” (p. 3). I too, feel the urgency to enjoy life to the fullest; every minute counts. And while the seniors are going through life assessments, I go through them too. Although I am not afraid of getting old, I find myself delighted that I still have time to do things. And when I come into a room full of frail seniors, I count my blessings and feel guilty thinking that way. And yet, I mingle with them and I discover precious moments of knowledge, wisdom, humour, kindness, lessons to learn, stories of pain, suffering and of good times, traditions, history — stories I will never hear again directly from the source. While appreciating the value of older people in society, I cannot help thinking how the society they helped build is ready to discard, waste and ignore them. In rendering Excess, society could spare this vulnerable population and recognize their worth in searching for deeper and different meanings. One of the difficulties in linking my artistic aspirations through architecture, research and dementia is in understanding who is an artist? Is it the person who declares himself an artist? One who is perceived to be an artist by society? One who makes a living by selling paintings? One who does not sell but paints, writes music or sings for the love of it? Who decides if what is being produced is art? What is art? When I look at my life as a whole, I see that art touches just about everything I do. I live art. There is no aspect in my life that does not go through the lens of aesthetics, form, shape, coordination, tension, focal points, physical and emotional perspective. I am thinking who is my audience, who is using my buildings, are they still going to like them in one month or years from now? I see art when I cook, do gardening, sew, knit, give haircuts, design buildings and their interiors. Architects need to consider material selection, aesthetics, compositions of form, colour, and balance whether on paper or on “real” sites. I select art to fit my designs, my clients and their budgets. I see art selection as an extension of my own designs. I create. This act of creation spills over into other areas and continues to change, influence, agitate, comfort and heal not only my clients but myself as well. Designing a building does not differ from creating a painting, a sculpture, a play for the theatre, a dance. The architect, the artist, the dancer — 59 all are trying to express themselves through a creative process that takes in information through the senses, then digests it while searching for meaning, and delivers it in multiple ways. Each drawing may lead to another and each dance may inspire another. None of these forms of expression are limited, isolated and contained. I also enjoy the opportunity of designing stained-glass windows and furniture to satisfy the “real” artist in me. As I try to understand what attracts me to work with seniors with dementia, I think it may have to do with the fascination I feel working in situations and with materials that appear to the eye very fragile, such as glass, and yet have hidden and surprising qualities of strength. It is in this paradox that I find my most creative moments born. It is the tension between opposites that intrigues me. I am always curious about what may transpire and I look forward to challenges that will inspire new ideas. Not every road leads to success but I learn as much from failures. When I got interested in designing stained-glass windows for the buildings I designed, I was told by experts that there were limitations to how glass would respond to cutting and this would limit the scope of the design. Although I understood the limitations, I wanted to break away from the traditional design approach and be open to whatever might come my way. I have been ridiculed for being naïve, for venturing into a field where I did not pay my dues. But what some did not understand was this: the sheer fact that I was not trained meant that I was not boxed in. I could look with fresh eyes at how to use glass in different ways, for partitions, windows, roofs and even floors. I have come to appreciate glass art by doing it. Living it. Like everything else in my life, it seems that my practical experiences propel me into new endeavors. Trying to understand how things come about and where they are going, I explore the rationale for their being. This back and forth is an effort to make sense of the world, and at the same time be aware of new possibilities. It fits within the six rendering of Reverberations described in alr/tography (Springgay, Irwin, Wilson Kind, 2005). As the glass was breaking away from the pieces I needed for various projects, I became aware of the accidental shapes of the broken glass. I was drawn to create new compositions, using different techniques and making a deliberate effort to leave the accidental pieces as they were. I found myself checking each excess piece, for its shape, colour and how I could continue to use it. All of a sudden, the leftover broken pieces were more exciting than the projects I had already designed. At this point, the renderings of Opening and Excess came into play, inspiring the creation of three-dimensional glass sculptures I call my accidental projects. As I write about it, I realize that I use the same approach in my work with seniors with dementia. I try to chip away at the obstacles that prevent the seniors from using their remaining abilities. As I do that, I am aware that their responses may be unpredictable. And like the sharp edges of the broken glass, I may need to smooth the rough edges so we can continue to work and minimize the harm. As I walk into the workspaces allocated for art activities in most long-term facilities I have visited, I feel so discouraged. The artist in me shrinks at the gloomy prospect of having to pretend that space is unimportant in the creative process. The facilitator in me takes over to mediate the circumstances and do the best I can under these conditions. The architect in me wants desperately to design the state-of-the-art studio that would take into account all physical, emotional and artistic needs of seniors with dementia. The researcher in me is already busy collecting data, searching for the right methodology that will explore whether or not it is important to provide an appropriate space and atmosphere that may or may not be conducive to creative expression activities. I very much liked McNiff’s description of space and function in what he calls “the studio”. Architects who design therapeutic environments will find this description of great interest. I emphasize the studio because we need it more right now. I know that I desire the studio. There is not enough ofit in my life. Two decades ofworking with graduate students and art therapy colleagues has shown me that they hungerfor it too, and the phenomenon of art therapy needs the studio. IfI walk into a medical environment with its chemical and antiseptic smells, my soul is aroused only to the extent that I want something else. The 60 medical environments can sometimes be the antithesis ofart. The studio summons the artist in me and the artist in art therapy. (p. 135) Irwin joins McNiff’s desire to work in a studio situation and be inspired by the ambience the space offers. As she states in her article, Walking to create an aesthetic and spiritual currere, “Whenever I walk into this space, I become acutely aware of my need to create, my need to care for the urge to create” (p. 3). And so, the architect in me becomes vety practical and sets to work within the rendering of Excess, trying to find solutions from a wasted situation. Working within the rendering of Reverberations, I find myself pushing against the administration and their resistance to any change in the status quo. The architect in me asks: how can I change the conditions, improvise, use skills and knowledge, use innovation and creativity? And so, I find temporary solutions in various situations, such as these. I was lining up seniors to paint on a glass partition wall in a long-term care facility where I was conducting creative expression activities. I knew the glass was tempered, easy to clean, safe and a novelty. The results were exciting. The seniors wanted to draw and produced many of the artworks that were displayed later in an art show on creativity and dementia. On another occasion, I lined up seniors in front of a glazed exterior wall facing into the garden. As the sun was coming around and shining through the drawing paper posted on the glass doors, I was in awe of the beauty of the light, the shadows on the wall and floor, the seniors painting and loving the warmth of the sun. I grabbed a brush and started to paint. When I came home, I wrote down every detail that would help me understand what happened that day. At that time, I shot a whole roll of film that now helps to demonstrate the importance of having an appropriate space for creative activities. AIr/tography also stresses the role of the researcher as an educator. As Irwin explains in her philosophy of teaching: Art pedagogues become involved in their own continuous learning while recognizing the personal knowledge, interests, experience ofthe students in their care. Pedagogues wish to nurture the growth oftheir students’ emotional, intellectual, spiritual and intuitive powers in a cooperative learning environment. Learningfor the sake oflearning is not enough. Importance must be placed upon translating understanding into action, empowering students to be active creators and potential transformers oftheir material and cultural world ... (Irwin, 2005) Although I do not call myself a teacher as the result of formal education in that profession, I do think of myself as an educator/learner. I have taught Hebrew for many years to young children and adults, I have home schooled my children, taught interior design to university students and served as a mentor to university students over the years. In education terms, I consider myself a facilitator. I facilitate a situation in which the people I interact with are encouraged to express themselves. Working with seniors with dementia, I find myself learning from them as well. I am there to release what they have already known for a long time and may have forgotten. I am there to provide information that may be new to them at the moment, but which I know they knew once before. And so I borrow from psychology that claims that familiarity is an automatic inherent human quality — seniors with dementia may feel familiar with a situation or an object although the memory of it was destroyed. For example, seniors may not remember me as Dalia, the person who comes in once a week to work with them on creative expression activities, but they may link my presence with something that is pleasant and enjoyable and perhaps with food, since I often bring homemade desserts or food to most sessions. Concluding thoughts on architecture and a/r/tography. There are two issues that come to mind when discussing architecture and alr/tography. One is the unquestionable link between the visual 61 expression of architecture and the text that comes along with it. The second issue is the opportunity that alr/tography opens up for the acknowledgement of architecture as practice and as theory. AIr/tography is described as “a coming together of art and graphy, or art and writing” (Springgay, Irwin and Wilson, 2003, p. 4). Since architecture is a form of artistic expression, I can substitute the word architecture for “art”. To test the notion of architectural drawings without text we need to ask the following: could a building stand on its own merit without a name, an address, without occupants or the name of the designer? Could the building be understood without asking why it was built and what for — when it was built, what was the cultural context, and what materials were used? Without this information would we understand the full meaning of its purpose? I would say, no, we would not understand the full meaning of its purpose. We should not forget the reams and reams of drafting papers, trails of sketches, meshing art and technology and text together. What about the historical written information of negotiations for permits with various authorities? When we understand that the building is also a product of local and national building codes, do we get the full picture then? Looking at a building without knowing its context is like trying to read Egyptian hieroglyphics. Yes, we can see them, but can our minds make the necessary connections to make sense of them? Then I wondered: if we separated the text from the drawings, could we count on the text alone, following the same specifications, to guide us towards the same exact building design. I believe that in spite of working from the exact specifications, the design would vary from one designer to another. The individual architect’s ability to perceive, analyze and produce would be reflected in each interpretation. This observation is based on many years of architectural practice and comments from colleagues in the field. To support this observation, there is an interesting example about how text alone fails without the adjunct image. Although very detailed plans ofNoah’s Ark or the Holy Temple in Jerusalem were described in the Old Testament, we cannot know for sure what they looked like. In artistic interpretations of the Temple and the Ark, we witness several versions. All claim to be the closest interpretation of the biblical text. The second issue that deals with architecture as practice and as theory refers mainly to architecture that focuses on therapeutic environments. Architects do theorize and contemplate through their ideas and planning as to how things will be done. Architects through their practice and theory generate new ideas and forms and invite the participation of their clients and users. Michelle Fine (2000) was quoted in Gergen and Gergen (2000) questioning the future of qualitative research with references to relational inquiry which fits the process of making architecture: “What elements of qualitative research are productively engaging toward democratic/revolutionary practices; toward community organizing; toward progressive social policy; toward democratizing public engagement with social critique?” (1998, p. 1038) The most important message that came out of understanding a/r/tography is that the human spirit is an amazing, regenerating force. Like water in a river, our brain will seek an outlet and find ways to communicate, to express. We need to provide opportunities and means for everyone, especially people with dementia, to continue to communicate in many forms. We need to listen to the unsaid and to what may be missing. While others may accept the appearance of dementia and take its impediments for granted, we must question that acceptance, look below the surface and tap into the human spirit — of the seniors and ourselves. Just like alr/tography, we need to allow the images, the text, the story, the real and the imagined to coalesce into meanings so we can understand better how visual and performing arts can be used in communicating when other ways of communicating fail. AJr/tography allows researchers to bring their own storyline into the situation under study, a storyline that may influence, intersect, observe and interact with whatever the researcher/artist is engaged with and brings to the study. A/r/tography gives freedom for the researcher/artist to process theory into the 62 production of the art. In one singular expression, theory and practice are fused. Artists understand this fusion; they do it all the time whether they are aware of it or not. I employed alr/tography as a mean to collect data throughout the study. This approach provided an opportunity to examine the role of the researcher in making a difference in the seniors’ abilities, as they were demonstrated through creative self-expression, and by changes that were made to manipulate the architectural environment. The multiple roles of researcher/educator/artist/facilitator in the implementation of the creative expression activities program were also explored in an effort to elicit crucial information that could be used by behavioural scientists with a focus on dementia care. During this study I had the opportunity to propose a design for stained glass doors for the L’Chaim Adult Day Care Centre. The design, which is discussed elsewhere in this dissertation, is based on my experience as a stained glass designer and my familiarity with the Jewish culture and faith. I also experimented with architectural drawings in an effort to shed my position as an authority, the one who knows better, by condensing key issues that could be understood at a glance, and appeal to various cognitive abilities in seniors with mild cognitive impairment to moderate dementia. The idea was to bring across information without having to read the whole document, which would have been a monumental or impossible task for the participants. The drawings include photographs that were taken of participants during the various activities, significant quotes and textural summaries regarding the spaces that were used during the various sessions. I was also aware that an aJr/tographer did not necessarily have to produce an artistic product as long as the rigor of the study and its philosophy were maintained. As stated by Irwin and Springgay (2005): “Artists engaged in alr/tography need not be earning a living through their arts, but they need to be committed to artistic engagement through ongoing living inquiry” (p.11). As I was exploring ways to go about my academic inquiry, I realized that I had included intuitively in my practice many of the ingredients that describe alr/tograpic research. I was interested in experimenting with ways that would better the quality of life of seniors with dementia with a focus on the links between creative expression abilities, space and programs. Experimenting comes naturally to professionals trained in architecture and design. We are trained to look at the world around us, assess it functionally and aesthetically, to almost automatically and spontaneously look for ways to see things differently. We assess existing situations of spaces interlinked with human behaviour, and then we revise or design spaces to suit the clients’ physical and emotional needs. And we assess the results of our work, and its impact on the client’s well being, to judge whether or not the project was successful and whether it answered the objectives of the project. I was also aware of the balance of power between myself and the participants. I fully understood the conflection between being an architect, researcher, facilitator, educator, when I invited the participants to express their opinion as to how I should position myself in the room when I talked to them. I like to stand in front of the group, like a teacher in a classroom. No one complained. It was taken for granted that this is how it should be. But when I opened the floor for discussion as to whether I should sit or stand, it quickly became an issue of exhibiting superiority, the person who knows best, the expert. The moment I sat down, the balance of power changed. As one of the seniors at L’Chaim Centre put it: “You are now one of us”. Such a small gesture became very significant in the interaction with seniors with dementia. In addition to the new understanding about standing or sitting and the roles attached to it, I learned that reflexivity, which is sharing personal and subjective life experiences with participants, caffies a danger of silencing participants if the researcher goes overboard telling these stories. I learned that there was a fine line between getting the participants’ attention with personal stories and the danger of overburdening them. Initially, when I planned how the data would be collected, I was aware that some limitations would affect the procedures and the overall approach to this study. First, the opportunity for experiments with major architectural changes was slim and, therefore, participation in changing a real situation would not exist or be affected by the feedback from participants. Although I was drawn to participatory action 63 research, at that point I opted not to use it. There was also deep scepticism about whether people with dementia could participate in research inquiry in a meaningful way. As the study progressed unpredictable new developments made me aware that seniors with dementia could participate in research when given an appropriate opportunity. Since the decisions to make some interior changes were going to be made very fast, just when I was about to go on a trip, I was asked to provide ideas for floor covering and wall and door paints. I used data collected in a previous session that included the seniors’ ideas on how they would like to design their dream art studio in the Centre. After the renovation was completed, I interviewed the seniors about the changes again, made notes of their opinions and made some efforts to address their concerns. This process is still going on. At L’Chaim, I was able to respond quickly to the changing situation. To support the need to be flexible and open to unpredictable events, one can listen to the views of some researchers who are artists. Lenore Wadsworth Hervey’s (2000) book Artistic inquiry in dance/movement therapy, creative alternative for research, Shaun MeNiffs work (1986) Freedom ofresearch and artistic inquiry and Roger Grainger’s book (1999), Researching the Arts Therapies, A Dramatherapist’s Perspective support my own way of thinking. Lenore Wadsworth Hervey quotes McNiff (1986) as he explains the characteristics of creative researchers and their traits: The need to explore the widest range ofpossibilities and chance events; imagination; openness; persistence; the ability to change strategies in response to the material under review; the mixing ofdisciplines; a willingness to err; intuition; an interest in the unknown; an inability to simplyfollow the tradition oflogical analysis; personal powers ofobservation and interpretation. (p. 282) Any artist/researcher who is engaged in artistic inquiry can identify with this description. Artists inherently resist urgings to follow step-by-step prescribed regulations. A certain rebellious streak leads artists to veer off the main course and look for ways to capture the process of inquiry from several unconventional angles. At the beginning I envisioned a democratic style of inquiry, where all concerned participants would be equally important — mainly to protect the least heard people: the seniors with dementia. From a purely academic standpoint, conducting participatory action research would be controversial since seniors with dementia need to be declared competent and capable of giving consent. Nevertheless, working within the limitations of this population, I still managed to accommodate input from the seniors utilizing their remaining cognitive and physical abilities. As Roger Grainger (1999) put it: Ifwe are lucky, ofcourse, we mayfind exactly the right kind ofresearch technique that we need. Ifnot, we must use the most appropriate onefor our purposes. This may mean adjusting the situation in order tofind a suitable way ... (p. 33) Grainger (1999) states that involvement is a key issue in research using “as many sources of information as possible. Instead of concentrating on observations” (p. 99) made by unbiased observers, all parties have direct input into the research process. In his research he uses “interviews, questionnaires diaries and journals, narrated accounts of personal experiences, reports of interactions observed either overtly or covertly or both, plus the use of video” (p. 100). He also explains that “leaders of the group go to considerable lengths to develop a shared atmosphere of trust and co-operation” (p. 100). A model for researching creative expression abilities, social interaction as they are linked to creative expression programs and the physical therapeutic environment is Roger Grainger’s book, Researching the Arts Therapies; A Dramatherapist’s Perspective (1999). Grainger joins Shaun McNiff in his approach to the arts in healthcare. They both embrace a wide angle approach that marries the arts with the sciences. Their approach is to research the arts in a natural way, offering the least resistance to what begs to be explored. Their philosophical approach to research shows flexibility, openness to changes that flow with 64 whatever arises from the exploration; it celebrates ambiguity, thriving on tension, as the researcher and researched are engaged in a dance-like relationship. Grainger’s approach literally embraces life. He mixes methods of research as needed. It may be a mix of any of the following: qualitative and quantitative research methods, action research and art-based research. Like Shaun McNiff and others, he draws examples from art, music, dance and movement therapies. In this way, we see ourselves as practitioners and researchers as the same time. Our research is grounded in our experience. As in alr/tography, Grainger concurs that “The impetus to explore it [psychological therapies] came from my own personal involvement in it” (p. 9). Grainger tries to explain why research in the arts cannot be forced into compliance with rigid scientific rules. The following quote illustrates a fundamental thought that supports the reasoning as to why the arts in the service of healthcare need to be approached differently: Thus although the creative therapies may be said to ‘use’the various artforms, they do not do this in the sense that we often mean by the word use. They do not subsume them in any way. In the human attempt to be ‘scientflc’ they may try to reduce them to something that can be reproduced in terms ofone own existing mental schemata, but they are bound to fail because art cannot be used in this sense. It has an innate tendency to keep cropping up when and where you were not actually looking. Because ofthe effect it sometimes has on you, your reaction to it, it sometimesfeels that it is it that is actually using you ... Phenomenologically, arts stands apartfrom what it is deeply concerned with: because it is a living symbol ofrelationship and ‘betweenness’, it can help us in our searchfor human wholeness. (p. 12) Grainger warns that limiting ourselves to research that allows us to study “what we are able to measure” (p.18) will reduce what we really want to know or change altogether the direction of the inquiry. Summary of Research Methods This study employed a!r/tographic research within the qualitative paradigm. A/r/tography seeks knowledge through living inquiry and a commitment from the researcher as an artist and educator to a process of questioning. AIr/tography recognizes the ambiguities, uncertainties and the difficulties that can arise from situations and seeks understandings of them. A/r/tography allows the researcher to be self reflective. A/r/tography gathers information from relational conditions that support democratic relationships with other participants in the inquiry. It also invites participants to be part of the study process and experience the resolutions if they happen. A/r/tography and its understanding of the multiple roles of the researcher and his/her involvement through relational inquiry fits perfectly with the making of architecture as practice and theory. The three forms of knowing (theoria), doing (praxis), and making (poesis), which are fundamental concepts in alr/tography, are also the structural pillars of architecture. Ethics in Research Ethics is an area of major concern when conducting research with vulnerable populations such as seniors with dementia. The literature on the topic of ethical issues in healthcare in general is enormous. In a course on ethical and philosophical issues in community-based research presented by Drs. Michael McDonald and Jim Frankish, I had the great opportunity not only to discuss ethical issues that were relevant to the participants we work with, but also to reflect on my own values and woridview, to be aware of the levels of objectivity or subjectivity reflected in my research. This course covered fundamental challenges regarding the ethical conduct of research and related issues of power, participation and ownership of knowledge. Articles by authors such as MackIm (1999), Minkler, Faden, Perry, Blum, Moore & Rogers, (2002), Williamson and Prosser (2002, 2002a) all touch on dilemmas and 65 problems in conducting research. Issues such as personal rights versus the good of the community at large were discussed. In studying seniors with dementia we need to be aware of: a). The limited memory capacity and frailty in seniors with dementia, b). Their ability to give written consent, c). The role of the legal guardian and their relationship with the senior with dementia, d). The role of the administration in the care facility, e). The trust that needs to be established between the researcher and participants and all other concerned parties. I am mostly concerned with: f). How much can we tell the seniors about their diagnosis of dementia, and what purpose would it serve? g). In the pursuit of academic honesty, should we cause sadness and anxiety in our participants by reminding them of their diagnosis, knowing they may forget about it in few moments or in a day or two? h). By not telling them, do we then sacrifice their right to be informed and knowledgeable about the study they are about to enter? i). What happens when a senior with dementia gives consent, but the legal guardian disapproves of their participation? j). What happens if a facility manager is reluctant to let research work be done in the facility, even though the resident and the family approve? An attempt to answer these difficulties in executing ethical research lies in a fundamental philosophical approach to life that can transcend borders of culture and geography: It is the profound conviction to maintain and respect human life and the right to live in dignity. This respect for human life transcends the duty between child and parents and encompasses the duty between an individual and the society at large: The home is infinitely more important to a people than schools, the professions or political life; andfilial respect is the ground ofnational permanence and prosperity. Ifa nation thinks of its past with contempt, it may well contemplate its future with despair; it perishes through moral suicide. (In Pentateuch and Haftorahs, p. 299) To satisfy academic requirements, I realize it is important to back up personal convictions with literary sources. In Denzin and Lincoln (2000), chapter 13, Valerie 3. Janesick (2000) states that: The myth that research is objective in some way can no longer be taken seriously ... As we try to make sense ofour social world and give meaning to what we do as researchers, we continually raise awareness ofour own beliefs. There is no attempt to pretend that research is value-free. Likewise, qualitative researchers, because they deal with individuals face-to-face on a daily basis, are attuned to making decisions regarding ethical concerns, because this is part offlfe in the field. From the beginning moments of informed consent decisions, to other ethical decisions in thefield, to the completion ofthe study, qualitative researchers need to allow for the possibilities ofrecurring ethical dilemmas andproblems in the field. (p. 385) Janesick also discusses the need to construct an “authentic and compelling narrative of what accrued in the study and various stories of the participants” (p. 386). In the following areas I attempt to answer ethical considerations: Frailty, memory capacity and giving an informed consent. The health condition of seniors with dementia was the single most important factor in designing this study. Based on my experience I set these conditions: • Limit the time allocated to each session • Be prepared in case of emergency and have resources in place for support 66 • Be careful not to expose the seniors intentionally to stressful activities or stressful environments in order to prove a point. While some experimental situations can be considered, I would not worsen existing conditions • Limit situations that knowingly keep away interventions that may benefit them • Allow participants to move around and leave at any time Memory capacity. Based on my experience, seniors with dementia may remember giving consent for time periods ranging from a few minutes to several hours or several days. It depends on each individual and their capacity to remember. I made sure the seniors were reminded every once in a while of the reasons I interacted with them and the objectives of this interaction. Written consent and dementia. Most seniors with early to moderate dementia can still read and write. They may not understand complicated concepts, any more or less than people outside the research field, or their peers of normal aging. Therefore, written and verbal information needs to be clear and simple to understand, without compromising the integrity of the study. All the participants at L’Chaim Centre provided their consent. At the Margaret Fulton Centre, the consent of the selected participants was accompanied with their family’s consent. The role of legal guardians and the relationship between them and seniors with dementia. In an ideal situation both parties would be in agreement and happy to take part in the study. However, legally, seniors with dementia can be declared incompetent by the legal system and consequently relinquish their rights to act independently and be solely responsible for their actions. Problems arise if the parties do not see eye to eye and one would like to participate in the study while the other refuses. This is a delicate situation. If a senior with dementia refuses to participate, that decision should override any other. If the legal guardian refuses, if possible, further negotiation can take place in very tactful ways and with full respect for the outcomes. As it turned out, one participant at Margaret Fulton Centre refused to participate in a couple of sessions. Although her husband was fully supportive of her participation, I felt it was more important to respect her wishes and let her leave the room and join another activity. Preserving her rights to control her wishes was more important than my need to conduct this study. The role of the administration in the care facility. The administration is there to protect the seniors with dementia and make sure their needs are met according to the policies of the facility. However, some situations may become sensitive in cases where the research work may be rejected or manipulated for fear it may interrupt the daily routine in the facility or threaten the administration by being critical. At Margaret Fulton Centre, there were issues with scheduling and the difficulties in assigning staff to help during the session. However, at the L’Chaim Centre, there were underlying issues of power and control that concerned the director. The trust that needs to be established between the researcher and participants and all other concerned parties. This took time, and careful consideration was given to be sure consents were given of free choice. In both Centres the process for acquiring the consents followed the prescribed regulations provided by the University of British Columbia and the Vancouver Health Authority. How much to tell the participants about their diagnosis of dementia. This is one issue I struggle with when working with seniors with dementia. On the one hand, I am expected to announce my intentions clearly and without ambiguity, yet there is a concern about discussing dementia with the seniors for fear of causing them unnecessary stress. I rely on the administration to provide me with medical information and to let me know if the seniors are informed of their medical condition. Many of the seniors did acknowledge their memory problems. Some knew about their diagnosis but forgot it, and did not mind being reminded. No one got upset to learn about their condition. I announced my intentions only when I felt that it was appropriate to discuss them and when we all felt safe. Generally, I avoided the issue if! could. I believe the participant has the right to know about his or her health condition. However, 67 I also believe in protecting participants’ wellbeing and this is the point where it becomes an ethical dilemma with no easy answers. 68 Sites Selected The Margaret Fulton Adult Day Care Centre in North Vancouver and the L’Chaim Adult Day Centre at the Jewish Community Centre in Vancouver were the sites chosen for conducting the intervention of creative expression activities and documenting the physical facility for data collection. The two facilities provided different qualities of space, participants, and operational procedures for the program of creative expression activities. Figure 4: Locations of Margaret Fulton and L’Chaim Centres The Margaret Fulton Adult Day Care Centre This relatively new facility is located at Mahon Park in North Vancouver. It provides a broad range of health services and support as well as socialization opportunities for seniors. The Centre, built in 2000, was designed by Sean McEwen, Architect with significant input from the Centre’s staff. It can accommodate up to 30 seniors a day, but is funded for only 25.5 seniors. There are four full-time employees, 6 part-time employees and 28 volunteers. The Centre includes: Entrance! reception area, nursing station, director’s office, staff area, quiet area, dining room, washrooms, outdoor area/garden, kitchen, janitor’s room, laundry room, bathing facility, beauty salon, arts and crafts area, exercise area, sitting area/fireplace, emergeney!treatment room, storage room. The Centre covers about 6,000 sq. feet. (Source: GVRD cert/Ied Municipal Map) Figure 5: Exteriors of Margaret Fulton Centre in North Vancouver, BC 69 The program in this Centre includes nursing supervision, health monitoring, assistance with personal care, and recreation for groups and individuals. A hot lunch with special diet options is provided. The program also provides valuable respite care for families by taking in frail elderly individuals cared for in the home; it is one of only two programs that provide this care in the Region. This Centre was the focus of a study conducted by Stacey Diane Grant for her master’s degree in gerontology at Simon Fraser University in 2001. The objective of the study was “to determine how adult day care (ADC) clients with dementia are affected by relocation when staff, programming and daily routine remain constant” (p. 1) Grant sheds light on the interplay between the physical environment, the use of the space and the physical and cognitive abilities of the seniors with dementia. She also refers to the environmentalpress, a term invented by Lawton and Simon in 1968, who describe it in these words: as “the competency of an individual decreases, the greater the impact of environmental factors on that individual” (Grant, 2001, p. 5). Personal competence is described by Lawton (1998, p. 2) as “[Ijntrinsic performance potential, the maximal expectable performance in biological, sensorimotor, perceptual and cognitive domains.” Figure 6: Interior Shots of Margaret Fulton Centre in North Vancouver, BC 70 The L Vhaim Adult Day Care Centre L’Chaim Adult Day Care Centre is located at the Jewish Community Centre in Vancouver. The Centre offers therapeutic, social, and recreational activities for homebound people who are elderly and/or have disabilities. It provides a Jewish atmosphere and hot kosher lunches. The Centre, established in 1985, moved to its present location in 1996 after the entire building was renovated. It can accommodate 15 seniors at a time and has 10 part-time employees, no full-time employees. The Centre has 16 volunteers, 12 of whom sit on the board of directors. It covers about 1,400 sq. ft. The Centre includes: one large lounge with furniture that defines areas for various activities, some lounge chairs for relaxation, a fish tank, kitchen area, washrooms, outdoor deck, two offices, storage room and treatment room, which was used for storage until recent changes to the centre. It is now a treatment room again. A SIN Figure 7: L’Chaim Centre Exterior Shots 71 Participants Selected This study focused on men and women with dementia over the age of 60 at the two adult daycare Centres. The initial ann of this study was to explore how the physical setting supports, stimulates or hinders the learning environment for seniors with early to moderate dementia to express their creative abilities. As the selection of participants began, it became apparent that selecting a homogeneous group of people in both Centres would be too difficult to achieve. Of the two Centres it was easier to select a group of participants of similar cognitive abilities at the Margaret Fulton Centre, since it was geared to serve difficult cases with more advanced dementia, while participants at the L’Chaim Centre were of mixed abilities, ranging from normal cognition with physical frailty to mild cognitive impairment to moderate dementia. 72 Figure 8: LChaim Centre Interior Shots Over the course of this study, emerging new information became available on mild cognitive impairment (MCI) and the significant implications of detecting this condition as early as possible. MCI is a stage in memory decline between normal aging and the diagnosis of Alzheimer’s disease (AD). It is sometimes referred to as amnestic mild cognitive impairment (aMCI) and is characterized by a mild memory decline in the context of normal daily functioning (Feldman & Jacova, 2005; Petersen, 2004). The majority of individuals with MCI develop Alzheimer’s Disease (AD) within 6 years (Petersen, Grundman, Thomas, Thal (2004, p.183-194). Literature on MCI indicates that learning interventions may help people with MCI to halt the deterioration. Several studies underway are exploring memory intervention in aMCI. One of them is funded by a 2003-2005 Alzheimer’s Society of Canada grant, where Drs. Troyer, Murphy, Anderson, Craik, Moscovitch & Marziali examined the effectiveness of a multidisciplinary intervention program for improving memory functioning in individuals with aMCI. Preliminary findings indicate that the intervention resulted in increased use of memory strategies, increased appreciation for the effects of lifestyle factors on memory, and improved ability to learn new names. Given the recent information on MCI, participants who were diagnosed with MCI, were included in the interviews and the intervention in this study. The selection of the participants was controlled by the directors of both Centres. At the L’Chaim Centre, permission to conduct the study was dependent on my consent to include all the seniors, regardless of their range of abilities. At the Margaret Fulton Centre, the director selected eight potential participants —later was reduced to seven people — with group of five women who stayed together through most of the four sessions. Figure 9: Participants at the MFC and LC Centres 73 Data Collection The data was collected in several ways. It included field notes, filming, photography, and drafting. No field notes were taken during interviews. All field notes were written immediately after each interview and each session. The field notes were based on my perceptions and were entered on a computer. The film activity was recorded and coded; the recordings were transcribed verbatim. The digital photographs were transferred to the computer, and the drawings were entered on the computer in AutoCad. Recording the Intervention 1. Field notes. Notes were written immediately after the activities were completed, usually within 4 hours. They included my personal observations, feelings, thoughts, comments, understanding of what transpired during each session and ideas for the future. The notes, including the date, location, and who was present, were entered on my computer. 2. Filming and sound recording. Filming gave me the opportunity to see things that transpired during the sessions I could not catch in the moment, whether it happened out of my range of sight, or I was too busy to see or hear the importance of the event when it occurred. It also gave me a more comprehensive view of individuals and of the group, and the ability to review it several times. Two cameras were used: a stationery camera and a mobile camera. One Sony PD 100 DVcam continuously filmed from a fixed wide-angle position showing the entire group seated around my working area. It used 3 hour tapes. The sound was recorded from one wireless microphone I wore. A second backup mini DV camera was used for close up and roving shots. This camera required tape changes at 90 minute intervals. Normal room lighting was used except for one test session experiment using added focused light. The video tapes were then transferred to VHS viewing tapes with Time Code information made visible on screen. The VHS tapes then were played on a rented professional video cassette player with a shuttle control. The films were labelled and divided into four groups: DV tapes for Margaret Fulton and L’Chaim Centres and the same for the VHS tapes. The timeline that was inserted on the VHS tapes for editing purposes helped to locate specific clips with ease. Here is a description of the process: • DV acquisition xfer to reference viewing media with time code (tc) picture burn :hr:mn:sc:fr • Edit process to digitizes DV camera footage using bum reference as directed • Edit First to Final Cut through three approval stages before outputting to Master • Output Master including thesis menu index for footage references, as directed by the author 3. Transcribing. A UBC student was hired to do the bulk of the transcribing. I checked the text for accuracy as I reviewed the video tapes. After the films were transcribed I selected the most significant moments to be included on a DVD that is attached to this document. Although some information was lost in the process viewing the videos for accuracy helped tremendously, since I could then concentrate on smaller details. It actually forced me to pay attention to the smallest sounds and to translate Hebrew and Yiddish into English. Transcribing verbal sounds into text was the relatively easy part, what was more complicated was describing the body language. Transcribing forced me to pay attention to the written word while blocking out other stimulus such as hearing and seeing. Transcribing was an essential part of the study that complemented other ways of collecting data. 4. Photography. I kept a digital camera with me at all times. I have used photography for many years as a way to freeze interesting moments wherever I go. This study was no exception. With the consent of participants, families and the administration of the Centres, I took photos of participants interacting, laughing, holding a violin, doing artwork and dancing during the sessions. I did not use the camera when situations were sensitive, since early on. I decided that the needs of participants would come first before the needs of my research. 74 5. Drawings. I used sketches and photographs to document the location of furniture, cupboards, TV screen, music instruments and plants. Floor plans were supplied by the architect of Margaret Fulton Centre and the building manager at L’Chaim Centre. The drawings of Margaret Fulton Centre were up to date. The floor plan at L’Chaim had to be redrawn since the measurements were not to scale. The information was given to a BCIT student who used AutoCad for transfer to the computer. I worked closely with the student and provided additional information in free hand drawings. Once the information was entered into the program, we could move things around and experiment with sizes and distances in a fairly short order. The room arrangement for each session at the two centres was documented. It included the furniture placement, room dividers, all the fixed features such as doors, windows, lights, kitchen counter and sink, where the participants were sitting, where I positioned myself, measurements of distances between participants and objects, the location of the camera and the camera man, the musicians and the musical instruments, and the TV. Each drawing was accompanied with still photos that were taken at the same session and included photos of inside and outside spaces. All of this information was used in the final drawing for each Centre and contained recommendations for future architectural changes. 6. Interviewing. The participants were asked if I could visit them at home for an interview. I described the style of the interview as a relaxed conversation. I made a point of not taking notes during the interview, nor did I use the camera. I felt privileged to enter their private life and wanted to keep it that way. For ethical and safety reasons, in my later notes I did not give too much information about the participants’ homes for reasons of privacy. In the case of participants with more advanced dementia, I called the families to arrange an interview once the participants themselves expressed an interest in doing so. Wherever possible, I preferred that a family member was present. The interview lasted from one to two hours. The visit was designed to give me some clues about the interests the participants may have had in the past and in the present. It was an opportunity to see hanging photos or photo albums of family, friends, pets and traveling. It was a time for reminiscing and sharing life experience. The information collected was then used in ways to attract the participants’ interest in the creative expression activities program, such as asking questions that were relevant to them. The interviews gave a better understanding of the person inside the disease. As a researcher I found the life experiences of the participants fascinating; they enriched my own life experiences and helped me connect and bond with the people I was studying. Analyzing Data I was looking for new understandings and emerging categories from recurring situations that could eventually congregate into patterns. I also was looking for unique moments that stood out and contained significant information. I identified these patterns by using color coding, available through -Microsoft Word. As I read the written data, I assigned a color to each situation, such as being anxious, sharing life experiences or expressing an opinion. The color coding turned into a legend that grew more refmed as the study progressed. The legend was re-adjusted, upgraded and re-inserted on each document as I searched for details that had escaped my attention. If necessary, I added highlights to the missing analysis. Towards the end, the legend grew quite comprehensive and patterns took visually and contextual form. This technique appealed to my artistic taste and called on my curiosity as to what color code meaning what situation, activity or behaviour were most prominent. Legend (example) Needs Hebrew translations from the video and inserted into the _____________ transcriptions. Dalia sharing personal information 75 I I Participants sharing life stories. Reminiscing. Participants’ acknowledgement of memory problems Memory and behavioral issues Space Issues (lights, circulation, finishes etc) Socializing Participants evaluating/commenting on to day’s session Participants enjoying music and the session. Showing interest. Non-English Words (N-EW’s) Staff interfering with activity Safety issues Ideas for future sessions Show this in a clip where relevant Part cpints be art supplies Dali g insti Tools for Collecting Data: Interviews Interviews with Participants at Margaret Fulton Centre Originally, eight women were selected at Margaret Fulton Centre to participate in this study. Seven of them participated in some or all of the sessions. All were previously diagnosed with dementia. Their ages were 66, 72, 76, 81, 83, 87, 92 years old. The oldest person participated in only one session out of four sessions; she stopped coming to the centre for medical reasons and therefore was not interviewed. Another was admitted to a long term care facility and stopped coming to the Centre altogether. The remaining five women formed a core group that participated in most sessions. Three participants were interviewed in the presence of their husbands. One participant was interviewed in the presence of her daughter. The following is an example of the field notes that were taken immediately after the interview was completed. Figure 10: Margaret Fulton Centre Art Facilitator and a Participant 76 Example Interview with a Margaret Fulton Centre Participant: July 27, 2005 Interview with Margaret Dyks and her husband at their home I made a mistake. I arrived one day early for the appointment. I wrote it a little messy in my calendar and read it wrong. Nevertheless, Bill and Margaret were home and had time for an interview. Margaret was sitting in the living room on their couch. They had just arrived from the dentist where Margaret had a tooth fixed. Margaret was dressed in a sweat shirt and was pulling on her sleeves to cover her hands. Bill was in shorts, a T-shirt and sandals. It was a hot day but I noticed that she is also cold at the day care and is always dressed warmly. At times too warmly. It seemed as if it was taken out of the 60s. Something like my mother would have. Bill sat down with us since Most of my conversation was with Bill. Although Margaret would smile or watch me talk she would look away whenever I wanted to make eye contact with her. She kept on looking at Bill as if asking for approval before she answered my questions or even responded to any of my comments. was telling me about their 3 grown children, 2 daughters and one son He also told me about their j!utine and skating. Bill gave me an envelop with copies of a letter to the editor of the North Shore erand an article that was published as a result. Bill took me to the kitchen to show me 2 albums full of newspapers articles and memoirs he was writing. Bill agreed it was a good idea. I don’t know if he will follow up on the advice. Margaret seems to show interest when the topic of discussion is about skating and singing. At one point I asked Margaret about her singing in her church choir and if she enjoyed it. Her answer was short” I am a singer” and she looked at Bill at the same time. I was there for about 2 hours. During that time Margaret sat in the living room and did not get up once, even to join us as Bill was showing me around. While I was there I had to call my own doctor for an appointment. As I was dialling the number, I noticed that the phone was covered with phone numbers not in an organized fashion. Bill saw me looking at that and he was quick to explain that it was to help Margaret remember phone numbers Towards the end I asked Margaret if she would like me to come back. She responded by shrugging her shoulders and twisting her lip to one side, as if saying she was not so sure about it. I have to admit, I was surprised at her response, and yet I needed to be reminded that having dementia might bring out responses that usually would be more controlled. When I left, Bill was very apologetic and waved good bye. ‘It was apparent that Margaret trusts her husband Bill and is dependent very much on his care They still go out to music events, skating and occasionally see friends for dinners orir:h. 77 I visited 9 out of the 14 participants at home in an effort to learn more about their background, families and interests. I did not visit two of the participants that were identified as having normal cognitive abilities; I was mainly looking for clues in the participants’ own home environment that might provide information on their interests in art work, home decoration, taste in colors, hobbies, and to listen to their life experiences as we leafed through their photo albums and photos hanging on the walls. By doing so, I gained a better understanding about how to engage them during the intervention of the creative expression program. The following is an example field notes that were taken immediately after the interview: Example Interview with a L’Chaim CentreParticipant: July 14, 2005 Interview with Jack Beckow I arrived on time at 2:OOm as we had agreed. It is a hot summer day. Jack buzzed me in through theintercom. I went up to the 12 floor where Jack greeted me very warmly. He was dressed in a bluejogging suit. The air was flowing in from the open doors to his balcony. There was a beautiful viewlooking over the flats of Richmond and the approaching airplanes. rlooked but very focused. He wanted to know the purpose of the interview and I told him about the topic of the study He sounded very mterested He told me that he was just mterviewed by a personfrom the Jewish Bulletin newspaper, that lots of information is gj to in the article and that I shouldlook into it. I did not want to tire him, so my questions followed whatever direction the conversation wasleading us. There are a few art pieces on the walls. There is no clutter. I found outthat his first wife died tragically in a fire that started from a cigarette she smoked in bed He was left withyoung children. I don’t know too many details about them. He remarried a musician and divorced severalyears ago. He stayed friendly with his ex-wife. As we were talking about L’Chaim, I told him that Michel and June would love to have friends come over. 1-Ic was not sure he could tolerate Michel’s talk and attiti . I told him that, in private, he is really delightful. lack was talking about opera Be invited me to the next room to see his collection Behmd the oprthere werat leasC5shelves,5 feet long, full of videos of operas, all labeled and organized meticulouslyOn the wall was a poster of the 3 Tenors Next to it was a poster of Pierre Trudeau, one of the prime ministers of Canada I asked Jack about it he answered that Trudeau was the best politician in Canada and that he admired him. We continued to talk for a little longer. Jack was telling me how important L’Chaim was for him, that helost all zest for life and stayed motionless in his apartment until he came to L’Chaim, where,with thehelp of the staff, he started tp enjoy life again His most important observation was that being treated like a person was crucial in hisW Interviews with Parncits at the L’haim Centre Figure 11: L.’Chaim Participants Engaged in Art Activity I a consultation session. I __________ His financial advisor and a family member had just not meet them. Jack planned it so I could be with him alone. 78 I told him that I am finding it interesting that at least three men in our group are design-oriented and I wouldn’t have known that if I had not talked to them individually and seen their work. Michel was a fashion designer and builder, Jack was an aircraft designer and builder, Avraham was a needlepoint artist, even though, according to him, he was a professional soldier in the Israeli army. This led me to think about the next project far L ‘Chaim. Based on my deeper understanding of the participants in the study, I have decided to ask the participants to design their dream art studio/or creative expression activities. Jack thought it was a great idea. He had a wonderful smile on his/bce and I could see his eyes sparkling. I think I have found a link to his passion — building. I parted from Jack with a big hug and a kiss and a promise to see him again next Monday. Significance of interviewing Participants at Their Home Getting to know the person inside the condition Finding clues that would attract the attention of the participant and make the activity program relevant for him Allow the researcher to develop a better understanding and bonding with the participant Encourage the sense of familiarity between the participant and the researcher Meet relatives and friends that form the support group and gain more infornntion through them when the participant can no longer provide it See the participant in a home environment and look for differences in behaviour that may impact his or her participation at the Centre Tools for Collecting Data: A/r/tography Field Notes As the program developer, facilitator and researcher, I was the person responsible for the design and implementation of the program and assumed the role of participant/observer. I visited the two sites numerous times before the study began in an effort to get to know the staff, the directors and the physical environment. At the L’Chaim Centre I conducted a workshop for staff and volunteers. My intimate knowledge of the Jewish faith and culture proved to be an asset that worked well for me and the participants. At Margaret Fulton Centre the situation was different. I felt 1 needed more time to become familiarized with the facil