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Creative expression, dementia and the therapeutic environment Gottlieb-Tanaka, Dalia 2006

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CREATIVE EXPRESSION, DEMENTIA AND THE THERAPEUTIC ENVIRONMENTByDalia Gottlieb-TanakaDip. The Academy of Art and Design, Bezalel, 1975M. Arch., the University of British Columbia, 1980A THESIS SUBMITTED iN PARTIAL FULFIMENT OFTHE REQIUREMNETS FOR THE DEGREE OFDOCTOR OF PHILOSOPHYInTHE FACULTY OF GRADUATE STUDIES(Interdisciplinary Studies)[Health/Education/Arts/Architecture]THE UNIVERSITY OF BRITISH COLUMBIAJune 2006© Dalia Gottlieb-Tanaka, 2006AbstractThis study aims to explore the physical environment in arriving at an understanding of theadministration ofand level ofsuccess ofcreative expression programs that were carried out with seniorswho have mild cognitive impairment to moderate dementia at the L ‘Chaim Centre and at the MargaretFulton Centre, two adult day care centres. I am interested in the circumstances that enhance or limit theseniors’ ability to express themselves creatively. Understanding the physical, cognitive and social abilitiesof this population helps establish the foundation for strategies that can manifest themselves in the shapeand 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 aresidential setting or in institutional care. This envelope could serve as a therapeutic environment thatfits with one of my long-term goals: To provide opportunities for creative expression activities witheducational components that are supported with appropriate architectural planning and design. Thisstudy is based on qualitative research in which a/r/tography is employed as the overall philosophicalapproach and as a methodology for data collection. A/r/tography seeks knowledge through relationalconditions, living inquiry and a commitment from the researcher as an artist and educator to a process ofquestioning. It also invites participants to be part ofthe study process and experience an ongoingprocessof inquiry. This method fits well with the making of architecture as practice and theory. The researchshows that the physical environment has the potential to attract seniors with dementia to stay in the spaceand become engaged in creative expression activities. But the space alone is not enough to engage theseniors in these activities. Success in implementing a creative expression program is linked strongly withan understanding ofthe seniors’ physical and cognitive abilities and with the commitment of thefacilitator to implement aflexible approach to each individual.IIAcknowledgmentsThis research was achieved with the help and input of many people and organizations. True to itsinterdisciplinary approach to research, this compelling topic on creative expression, dementia and thetherapeutic environment reached across many disciplines.I would like to acknowledge the many seniors with dementia I interacted with during the lastseven years, especially at the L’Chaim and Margaret Fulton Adult Day Care Centres in Vancouver andNorth Vancouver. The seniors were a source of delight, inspiration and deep emotional connection. Manyseniors from my early years of research did not live to see this dissertation or remember they were part ofit.I would like to thank Maureen Murphy, the Director of Margaret Fulton Centre and DebbieCossever, Program Director at the L’Chaim Centre for being such good hosts and wonderful willingpartners in this study.I would like to mention Sylvia Sinclair, an artist and teacher. Although she was not included inthis study, Sylvia was an incredible source of inspiration to me in my quest to unlock the psychosocialmysteries 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 solidsupport 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 BritishColumbia who, as my steady unwavering guide, managed difficult situations to bring me through to thismoment. Dr. Irwin, as my research supervisor, is joined by Dr. Marlene Cox-Bishop from the Universityof Alberta, who worked with me from the beginning of my studies, Dr. Habib Chaudhury from SimonFraser University, whose gentle guidance was very much appreciated and Dr. Howard Feldman, fromUBC, who answered my desperate need to include the medical profession in this work. I would like toadd to this group Dr. Jeff Small from UBC, who encouraged me in the early stages of my doctoralprogram. 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 andenjoy their support along the way. Among the staff at IHPR that helped in many ways were: JulietaGerbrandt, 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 probablyunaware of the impact they had on my newly developed career. In the last two years I was fortunate to beaccompanied by David L Brown, a videographer and a dear friend, who documented my work withseniors 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 Marezfor her support and great help in using her expertise at AutoCad and producing all the drawings for thiswork.I keep a special place for my family in this acknowledgment. Mineo Tanaka, my husband, knewwhen to step in and lend a helping hand - when I needed him the most. I valued his feedback and supportthrough the whole experience of being a mature student with a family and many other obligations. Mydaughter, Carmel, accompanied me with her wonderful musical talent in many of my sessions with theseniors. With insight, compassion and understanding of this population well beyond her years, sheprovided me with a sounding board in many of the difficult, wonderful and exciting situations weexperienced together. I dedicate this work to her, Mineo and my parents who would have been so proud tosee me graduate.111This 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 Societyon Aging. Their financial support enabled me to focus on my work and reach others in an effort toadvance research in dementia care.ivTable of ContentsAbstract iiAcknowledgments iiiTable of Contents vList of Figures viiiList of Attachments ixList of Drawings ixCHAPTER I: INTRODUCTION IThesis Organization 1Foreshadowing IOverview of the Research Problem 3Research Questions 4Objectives 4CHAPTER II: LITERATURE REVIEW 6The Therapeutic Environment 6Current Arts-Based Programs 7Definiton of Dementia 8Definition of Everyday Creativity 9Arts-based Programs in Dementia Care: The Literature on Special Care Units (SCU)versus Non-special Care Units (non-SCU) 10Music Therapy 14Strengths and Weaknesses as Music Therapy Links to Creative Expression Abilities and Dementia 15Music Therapy and the Arts Room in a Therapeutic Environment 17Occupational Therapy 17Occupational Therapy and the Arts Room 19Art Therapy 19DaIley’s View on Art Therapy and the Therapeutic Environment 23McNiff’s View on Art Therapy and the Therapeutic Environment 24Rubin’s View on Art Therapy and the Therapeutic Environment 25The Performing Arts 26Reminiscence Therapy, Life Review, Life Reflection and Storytelling 28Reminiscence, Life Review, Life Reflection, Storytelling and the Therapeutic Environment 31Review 31New Directions for Research and Implications for Practical Implementation 32Recommendations 33Emerging Approaches to Creativity Research 34Other Perspectives on Creativity and Expression 38The Meaning of Creativity, Gaps in Information 40Creativity and Aging 41Why Creativity and Creative Expression Are Important 43How Seniors with Dementia Experience Everyday Creativity within the Aging Process .. 43Physiological Changes Associated with Aging and Dementia 45Cognitive Changes Associated with Aging and Dementia 50Social Cognition, Aging and Dementia 52VCHAPTER III: METHODS.56Qualitative Research 56Selecting Qualitative Inquiry 56AIr/tography 57Summary of Research Methods 66Ethics in Research 66Sites Selected 69The Margaret Fulton Adult Day Care Centre 69The L’Chaim Adult Day Care Centre 72Participants Selected 72Data Collection 74Analyzing Data 75Tools for Collecting Data: Interviews 76Interviews with Participants at Margaret Fulton Centre 76Interviews with Participants at L’Chaim Centre 78Significance of Interviewing Participants at Their Home 79Tools for Collecting Data: Nr/tography Field Notes 79Significance of AIr/tography Field Notes and Analysis 85Tools for Collecting Data: Filming 87Tools for Collecting Data: The Intervention — The Creative Expression Activities Program 88Timeframe for the Sessions 89Selected Sessions from the Creative Expression Activities Program 89Observed Everyday Creativity 89Engaging in Creative Expression Activities 90Tools for Collecting Data: Space Diagrams 91Example of Video Transcript and Analysis 92Analysis of Videotaped Session 113CHAPTER IV: UNDERSTANDINGS DERIVED THROUGH INQUIRY 115Themes That Emerged from the Literature Review 115Design Principles for a Therapeutic Environment 115Applying the Five Design Principles at the L’Chaim and Margaret Fulton Centres 116General Recommendations 120Design Principle 6: Provide Opportunities for Different Levels of Participation inCreative Expression Activities 121Design Principle 7: Provide Opportunities to Celebrate One’s Ethnicity 122Physical Changes to the Environment and the Users’ Response to Them 124Summary of Understandings Based on the Inquiry 127Furniture Arrangements at the Margaret Fulton and L’Chaim Centres 127CHAPTER V: DISCUSSION 164Reviewing the Themes 164Reviewing the Design Principles 165Reviewing the Understandings Reached 167In Dementia 167In Creative Expression Activities 167In the Therapeutic Environment 168Questions for Future Inquiry and Closing Comments 171The Overall Significance of the Thesis 172viEpilogue.175Bibliography 179Appendices 199A. Samples of Field Notes and Interviews at Margaret Fulton and L’Chaim Day Care CentresB. A/r/tography Field Notes at Margaret Fulton Adult Day Care CentreC. Session PlanningD. Samples of Consent and Assent FormsE. Sample of Interview QuestionsviiList of FiguresFigure 1: Overview of Thesis 5Figure 2: Selected Approaches to Creativity Research 9Figure 3: The Conceptual Framework of the Person-Centered Model versus Medical Model 55Figure 4: Locations of Margaret Fulton and L’Chaim Centres 69Figure 5: Exteriors of Margaret Fulton Centre in North Vancouver, BC 69Figure 6: Interior Shots of Margaret Fulton Centre in North Vancouver, BC 70Figure 7: L’Chaim Centre Exterior Shots 71Figure 8: L’Chaim Centre Interior Shots 72Figure 9: Participants at the MFC and LC Centres 73Figure 10: Margaret Fultori Centre Art Facilitator and a Participant 76Figure 11: L’Chaim Participants Engaged in Art Activity 78Figure 12: A Senior with Moderate Dementia at the L’Chaim Centre Designs her Creative ExpressionStudio 84Figure 13: Participants at L’Chaim and Margaret Fulton Centres 85Figure 14: Participants at the L’Chaim Centre Engaged in Music Activity 86Figure 15: David L Brown, the Videographer, Sets up the Cameras at the L’Chaim Centre 87Figure 16: Turning the U Table Around with the Opening Towards the Windows 88viiiList of AttachmentsA: Gottlieb-Tanaka, D. (Producer/Facilitator) & Brown, D.L. (Videographer). (2006). Margaret FultonAdult 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 DayCare 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 DrawingsDrawingLC—1 131Session One — Music, All tables are arranged into one large rectangular shapeDrawing LC—2 134Session Two - Repeated Music Activity, Tables arranged in a U-shape with opening facing main entranceDrawings LC — 3A and 3B 137Session Three — Friendship3A — Detached dining tables3B — Back to a U-shape arrangement with opening facing main entranceDrawing LC-4 140Session Four — Bending Wires. Strength versus Weakness, TriangleDrawing LC—5 142Session Five — Designing Creative Expression StudioDrawing LC—6A 146Hand Sketch of Proposed Floor Plan at L’Chaim CentreDrawing LC —68 147Proposed Floor Plan at the L’Chaim CentreDrawing LC — 6C 148Proposed Floor Covering Design —Implemented at the L’Chaim CentreDrawing MF — I (small room in the back) 151Session One — Friendship, Two tables are arranged into L shapeDrawing ME —2 (art Therapy Room) 154Session Two — Music, Two tables side by side creating one table (8 feet wide by 8 feet long)Drawing MF — 3 (courtyard) 157Session — Music and Drumming, Two round garden tablesDrawing MF —4 (small room in the back) 159Session Four — Massage and the WalkoutDrawing MF—5 162Proposed Changes to Floor Plan at Margaret Fulton Centre, Adding a new deck to the back room andexpanding art area and interior wandering pathixCHAPTER I: INTRODUCTIONThesis OrganizationThis dissertation is composed of five chapters. Chapter one, the introduction, includes a section onforeshadowing, which explains how I came to work on this topic. It includes an overview of the researchproblems and the thesis objectives. Chapter two is a literature review of the therapeutic environment as itrelates to arts-based programs and persons with dementia. In this chapter I review current arts-basedprograms, such as music and art therapies, while looking for relevant information on dementia care thatare relevant to my creative expression program. The review is designed to identify the strengths andweaknesses of each program type, in relation to creative expression abilities and the therapeuticenvironment. Chapter three, methods, explains the rationale behind the selection of a/r/tography as amethod for data collection for this inquiry. It includes a thoughtful consideration of the ethical issues ofdoing research with this vulnerable population. It provides background information on the selected sitesand the participants. In this chapter I discuss techniques such as interviewing, filming, and conducting theprogram on creative expression activities in collecting data. To analyze the data collected I used colorcoding throughout the textual material to identify themes and patterns. At the end of the chapter I includea transcript of one of the 27 videos that were taken as an example, where, again, I used color coding foranalysis. Chapter four, understandings arrived at, discusses the themes that emerged from the inquiry andapplies the design principles to existing conditions at the two facilities as I change the furniturearrangements and document them in writing, drafting and photographing. At the end of this chapter Ipropose architectural resolutions for the two sites, some of which have already been implemented at theL’Chaim Centre. Chapter five is a discussion that reflects my understanding of the themes and theapplication 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 asfacilitator/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 andparticipants showered on me.ForeshadowingI was born into a family of Holocaust survivors. I can count my family members on one hand. Onlyone uncle out of many uncles and aunts who lost their lives in the war remain alive to day. It took years torealize 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 taughther students, in her lesson preparation, class decoration, in the way she was dressed and how she mademy dress-up costumes.My father was one of the last carpenters of his era who could still decorate his handmade furniturewith traditional wood inlay. As a child I would spend hours in my father’s shop watching the dance ofcreation. I can still smell the glue, the varnishes, hear the screaming sound of the saw, the hurriedinstruction of my father to his intern, and the calls ofjoy or disappointment as the work progressed. Ithink my father appreciated my fascination with his work. Years later, after I decided to continue mystudies in architecture, he offered his small manufacturing space to me as he was thinking aboutretirement. We both knew deep in our hearts it was not a realistic move at that time of my life. Just beforehe closed his shop forever, he helped me build a chair that I designed for a school project I would latertake 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, andwere later joined by survivors of the war. Throughout my childhood I ached for grandparents, who did notsurvive and the sight of older people embracing their grandchildren would pierce my heart with jealousy.1And so the Holocaust, with its taxing issues of life and death and the lack of extended family, has been aninvisible 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 andapproval. Looking back, trying to understand those rare moments of happiness with my mother as wepainted or sewed together, I can see the early foundation for my skills in communicating with seniors withdementia.As I grew up, high school was my first encounter with formal education in the design world. Themore the situation at home and the relationship with my mother grew complicated, the more I turned tothe creative aspect of my studies. I loved those moments of searching for the best space solution, the mostsuitable 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 thosesolutions were equally valid.After high school I served for three years as a draft person in the naval headquarters in Israel. Oncemore, as the country struggled to sustain itself, issues of life and death re-emerged from my childhood. Iexperienced war after war until the day I moved to Canada and even afterwards, I was caught up in warsduring 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 mostdifficult times during the war, people still tried to write or paint (if they could find paper and pencil orwalls). They felt a desperate need to leave something of themselves for the next generation. Thesepaintings were intended to serve as documents recording present events. They were the shortest and mosteconomical 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, butthat program was already full. Instead I was accepted into the program on industrial and environmentaldesign. 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 theUniversity of British Columbia (UBC). I followed him to Vancouver. I left my country, my family, and apotentially brilliant career in architecture and substituted it with years of cultural struggle, languagedifficulties, 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 ofinsecurity and self-doubt. And so, to escape the disappointments and harsh reality, I went back to schoolto immerse myself in the world of design. I deliberately selected a research topic from a local situation tohelp integrate my efforts as quickly as possible into this new environment and its people. Althoughintegration was a priority, my struggle to maintain my own identity continued. After graduating fromUBC with a master’s degree in architecture, I joined my husband in running our architectural office andraising 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 sufferedfrom dementia. I had no knowledge as to how dementia manifested itself behaviourally or biologically. Itwas like stepping into a different worLd; once more having to learn the medical jargon of health serviceproviders, the terms of social work, of cognitive impairment and the issues of aging. Now, in the midst ofmy 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 worldI had entered four years earlier: the world of seniors with dementia in a long-term care facility. Nothing inmy 50 years of living prepared me for this complicated experience. In my youth, I was not exposed tomany old people and even less exposed to older people with dementia.2I started as a volunteer in a care facility spending time with Ruth, who was 86 years old, frail andsuffering from early dementia. Her health was deteriorating fast. With my limited knowledge I tried toalleviate the situation and faced many unanswered questions. It did not take long to realize that somethingspecial was happening to me. I needed to understand what was going on. And that is precisely the focusof qualitative research: it is the quest to understand what is going on in the world of a specific individualor group of people, to make sense of it and perhaps turn that new understanding into action, depending onthe goals set by the various parties involved in the research. In searching for answers to Ruth’sdeteriorating health, I learned that nothing could cure her; we could only make the best of the situationwith whatever activities Ruth could still manage. At that moment I went back to school to see what else Icould 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 creativeexpression would not be enough for me. I wanted my direct interaction with them to be meaningful andbring new knowledge that would benefit all of the stakeholders involved. I needed a way to record thenew information so it would not be lost or forgotten. I was looking for ways to make sense of myobservations, a system that would allow me to go back to it and access specific information, to exploreindividuals at different stages of the dementia, events, activities, architectural spaces and myself as aresearcher/artist/facilitator! educator and watch if concepts, patterns or any new information wouldemerge from all the data collected.Although contradicting each other at times, order and a fair tolerance for ambiguity are important tomy style of work. Before beginning my doctoral studies, the direction for my inquiry was based oncommon sense, my acquired knowledge and my own analytical way of problem solving. The desire tounderstand what was going on by being directly involved with those who use spaces within dementia carefacilities has ultimately guided my inquiry.Overview of the Research ProblemThe aging population in Canada will peak between 2025 and 2045 when the Baby Boom generationreaches 75+ years of age (Health Canada, March, 2001). Significant pressure will be brought to bear onthe healthcare system and on support services for older people. Various levels of care facilities areexpected to experience higher demand for their services. According to Health Canada, one of every fourpersons over the age of 80 will have some form of cognitive impairment. These pressures may threatenthe quality of services to seniors with dementia in the future. Today, most services are geared to servebasic needs, while existing quality of life programs, such as those based on creative self-expression, havenever really reached their potential. The consensus among researchers is that creativity enhances thequality 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 everydaycreativity, say that creativity manifests itself in being curious, in an ongoing process of self-evaluationand 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 enablepersons with dementia to maintain and enhance the quality of their lives and to use their remainingabilities to express themselves.This study aims to explore the physical environment in arriving at an understanding of theadministration of and level of success of creative expression programs in two adult daycare centres. It isbased on qualitative methods of data collection. I am interested in the circumstances that enhance or limitthe seniors’ ability to express themselves creatively. Understanding the physical, cognitive and socialabilities of this population helps establish the foundation for strategies that can manifest themselves in theshape 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 aresidential setting or in institutional care. This envelope has the potential to create a therapeuticenvironment that fits with one of my long-term goals: To provide opportunities for creative expression3activities with educational components that are supported with appropriate architectural planning anddesign.Research QuestionsThe following questions explore two main themes that focus on the environment and humanbehaviour. They cover the built environment, the facilitator/artist, the creative expression abilities ofseniors with dementia and the intervention of creative expression activities.1. How does the physical setting support, stimulate or hinder the learning environment for seniorswith dementia to express their creative abilities?2. As an alr/tographer, how does this study influence my perception of educational learningenvironments when working with seniors with dementia?ObjectivesThe goal of this inquiry is to investigate the physical environment, how it helps or hinders artsactivities and how the space is being used by the participants. In addition, we investigated how thefacilitator’s approach affects the creative expression abilities of seniors with dementia selectedspecifically for this project. That approach includes an investigation through the lens of alr/tographywhere 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) tohelp health service providers, formal and informal caregivers, understand the importance of the arts inmaintaining quality of life and as a tool for communication; (3) to offer an additional assessment tool tohelp understand the manifestation of neuropsychological problems that arise from dementia in a variety offunctional domains; (4) to provide concrete information for management in making decisions aboutfacility programs to show that creative activities benefit the seniors, the staff and the overall operation ofcare; (5) to help management in making decisions about facility renovation or new construction to includeappropriate spaces for creative expression activities; and (6) to explore applications in other situationswhere cognitive and physical abilities may be impaired.4Understanding concepts and definitionsthrough literature review of:• Creativity• Expression• Creative Expression• Therapeutic EnvironmentForming the conceptual framework• Creative Expression Activities tobe explored in:Understanding eminent creativity as it expands toinclude everyday creativityUnderstanding everyday creativity as it expands toinclude creativity and aging4,Identifying the gap of knowledge4.Understanding key issues in everyday creativity,aging, and dementia as it expands to include thetherapeutic environment4,Data collection and analysis usinga/r/tography and participatory action researchmethods4,Implementing changes to the environment, reviewingfeedback from participantsFigure 1: Overview of Thesis5CHAPTER II: LITERATURE REVIEWThis 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, Ireview the literature about the type of therapy as it relates to the therapeutic environment. In the nextsection of this review I explore the meaning of everyday creativity and how seniors with dementiaexperience it, with reference to the physiological changes and cognitive changes associated with agingand dementia.The Therapeutic EnvironmentA literature review of 20 references dealing with issues in the therapeutic environment in special careunits revealed a complete lack of information regarding space design for creative expression activities inlong term care facilities for seniors with dementia. As a result, there are no scientifically tested situationsto 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 forpeople 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 withdementia, I look to the desired outcomes I aim to achieve in. linking the environment with the behaviourof these seniors (Lawton, 2001). I will not know the impact of the environment until I carry out testsengaging participants in various experimental conditions of the environment, observe their reactions, andinterview a range of stakeholders including the seniors themselves (Lawton, 2001). The physicalenvironment 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, aplace and/or an atmosphere.In this review, I have considered the physiological and cognitive changes associated with aging anddementia with references that link them to creative expression abilities of seniors with dementia and toenvironmental considerations. Those references will assist later in the formulation of a theoreticalapproach 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 ofdifferent 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 herinterviews was the need for “Qualities of environments that promote creativity” (p. 71). When assessingenvironments for older adults with reduced competence, Lawton and Nahemow (1973) argued that thelower the competence of an aging person, the greater the negative impact of the environment, and themore 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 theseforces “the environmental press” (p. 3). Zeisel’s (1999) article on Life-quality Alzheimer care in assistedliving describes well the importance of the therapeutic environment for seniors with dementia. Zeiselidentifies eight design characteristics: exit control, walking paths, personal places, social places, healinggardens, residential features, independence and sensory comprehensibility. He lists eight organizationalcriteria: personhood, purpose, adaptability, staff suitability, life richness, family responsiveness, realworidness and responsibility. When the criteria and design characteristics interact, they form the basis for6a positive and therapeutic environment. Although there are references to the need for meaningfulactivities, no description or space criteria are provided.The literature review did not deal in-depth with the therapeutic environment because there were sofew 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. Theyreport that non-therapeutic environments “can result in frustration and disruptive behavior” (p. 74). Theymay also affect policies and programs. Cohen and Weisman recommend:Principle 1: clusters of small activity spacesPrinciple 2: opportunities for meaningful wanderingPrinciple 3: positive outdoor spacesPrinciple 4 other living thingsPrinciple 5 spaces from public to private realmsI will return to these principles and consider them at length in evaluating the work of this inquiry. Inaddition, 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, whenthey 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 privacyThese elements are discussed in detail in Chapter 4 in connection with the drawings related tounderstandings based on physical changes to the environment.Current Arts-Based ProgramsThe use of arts-based programs, as therapeutic interventions, is a relatively new concept and is stillevolving. This concept was developed by Shaun McNiff (1992) in his book Art as Medicine: CreatingTherapy of the Imagination. In it he introduced the concept of “multi-arts experimentations” (p. 23). Thisapproach to arts therapy is based on his work going back to the ‘70s. Of all the publications reviewed forthis paper on various arts-based programs, McNiffs philosophical approach to arts therapy offers theclosest definition of this topic:Art as medicine embraces life as its subject matter, and separations among the arts arecountratherapeutic. As I work with individuals, Jam open to their poetic speech, stories,body movements, dramatic enactments, sounds, and other expressions as well as to thepictures they paint. I try to establish contact with as many aspects ofthe person’spresence as possible. (p. 22) ... Art itselfbenefits from a community ofcreation thatinvolves different artforms and incites imagination through diversity. (p. 24)To identify and describe these current arts-based programs, I conducted a literature review. Theselected programs were based on the parameters established in the revised definition of “everydaycreativity” that was formulated in Question One and on McNiffs approach to creative expressiontherapies. These programs include: music therapy, occupational therapy, art therapy, the performing arts;7drama, dance/movement and storytelling therapies, reminiscence therapy and life review and poetrywriting, and they are the ones in use with elderly persons with “dementia”. Dementia is the term mostoften used to define this population of cognitive and physical impairments; it is my area of interest andtherefore 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 viewor a specific approach to the arts in health care.The review covered relevant literature published between 1995 and 2004, including some articlespublished as early as 1985, to identify the arts-based programs and the physical environment the programsoperate in, mainly in long-term care facilities, adult day-care programs and recreational centres forseniors. Although some aspects are extremely important— such as race and gender, medical models ofcare, 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, themajority 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 approacheshad to be considered for their relevance. Relevant literature on the topic was analyzed for its applicabilityof theoretical, methodological and practical approaches with some attention to the size of the samples, tothe criteria for subjects’ selection, the measurement technique used, how the data was collected andanalyzed, whether the findings could be replicated in another location with other subjects (reliability) andwhether the findings answered the research question posed (validity). Learning what techniques otherresearchers used or didn’t use helped me form my approach and understanding about how to proceed withthe inquiry. I did find out that no matter what methodology was used, almost all researchers mentionedthe difficulties in doing behavioural science research in dementia, and the sensitivity and flexibility thatneeded to be exercised.In the selection of literature I was not concerned with what quantitative research would see as failingto answer all the requirements of scientifically rigorous research. I was more concern to learn about theapproach and the reasons for selecting it. As in the arts, each situation is unique created by people whohave their own stories to tell, which are influenced by their various abilities to express themselvescreatively. And although the situation may not meet the standards of quantitative research may provideparts 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 DementiaDementia refers to the development ofmultiple cognitive or intellectual deficits that involvememory impairment ofnew or previously learned information and one or more ofthe followingdisturbances: 1. Aphasia, or language disturbances. 2. Apraxia, or impairment in carrying outskilled motor activities despite intact motorfunction. 3. Agnosia, or deficits in recognizingfamiliar persons or objects despite intact sensoryfunction. 4. Executive dysfunction, orimpairment 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, newmedicines 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 constantsupervision wherever they reside, whether at home or in long-term care facilities.8/ (1999)_________SternbergetaLGardner (1982)• PsychometricNeuropsychological Creativity• Experimental <‘) \approach based on Research Biographical< i• Biologicalinguistics• Contextual E— /• ArtificialBehavioural• Product perspective• Process• Biology research‘ Press• Clinical research• Cognitive researchEminent creatMty to• Developmentaleveryday creativityresearch• Economic factors ÷_ __ _ __theories• Psychometric research• Social researchFigure 2: Selected Approaches to Creativity ResearchDefinition of Everyday CreativityI have proposed this definition of everyday creativity:Creativity in the context of dementia adds something new and different to the world whetherthrough intrinsic self-exploration as an individual, or sharing creative expression throughinteraction with others. The creative process is demonstrated through creative thinking andimagination in everyday living and may or may not result in a product. Through creativity, peoplewith dementia could (can) enjoy meaningful, satisfying and (at times) unpredictable experiencesthat 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 placein. Both aspects are addressed through theoretical and practical perspectives, which are tightlyCreativity versus nocreativityCsikszentmihayi(1999)• Added — Publicrecognition andacceptance Creativity versus no creativityRunco (2004)• PersonRunco (2004)9intertwined. 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 withdementia. Which of the interventions are most effective in producing positive changes in the quality oflife of people with dementia? How do we define positive changes, by whose standards? Would pleasuresof the moment count as positive changes, although short lived? Are the people with dementia to beincluded in self-reporting and interviews? Can they or should they be included in the various stages of theresearch process? The last question is of major interest, since it leads to important ethical issues of givingconsent.Another interesting question is whether or not arts-based programs play a role in slowing down thesymptoms 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 payattention to the arts in the service of health care more carefully. In addition I ask whether or not thephysical environment matters? Could it be that a very capable arts-based facilitator can overcome lessfavorable environmental conditions and still achieve positive changes working with seniors withdementia? In short, does the physical environment really matter?Arts-based Programs in Dementia Care: The Literature on Special CareUnits (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 manyothers ranging from bath-taking or laundry-folding to drawing. Many times programs that are referred toare medical care programs, or government initiated programs that have nothing to do with artisticpursuits. The terminology used by various health care providers is at times confusing. While expecting toread infonnation on arts-based activities, I was surprised to learn that arts-based activities were manytimes 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, thereview was expanded to studies on special care units as they are compared to non-special care units inlong-term care facilities. Special care units are believed to be environmentally safer than non-special careunits for seniors with dementia and provide activity programs more suitable to the needs of confused andwandering elderly people with dementia. While there is an agreement on the safety issue, there aredisagreements 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, realityorientation, sensory and cognitive stimulation, reminiscence therapy, religious services, housekeeping,cooking, gardening, and sheltered workshop activities” (p. 95) OTA reports that the lack of appropriateactivities is a frequent complaint in nursing homes. At the time of the report, OTA was not “aware ofother available data on the proportion of special care units that provide particular types of activityprograms” (p. 96)One of the descriptive studies reviewed by the OTA’s report in 1992 was an early study conducted in1985-1986 by Weiner and Reingold and published in 1989. This study found that physical exercise andmusic therapy were the activities most used in the 22 SCUs they surveyed and in specialized programs inother settings, followed by reality orientation and sensory stimulation. In a study of 31 SCUs carried outby the University ofNorth Carolina and reviewed by OTA, both SCUs and non-SCUs provided almostthe 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, thephilosophical 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 inSCUs, identified “activities that are specifically designed for cognitive impaired” (p. 171) but no detailswere 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 appropriate10mental and physical stimulation” (p. 176). Again, no descriptions are provided as to what constitutesappropriate 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 adescription of program activities. In the 1999 revised publication Guidelinesfor Care by the AlzheimerSociety of Canada, there is a short section on meaningful programs and activities, which emphasizes thetheoretical 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’scare, she points out that “various authors recommended that care facilities, through environmental designand programmed activities, provide opportunities for people to ‘burn-off excess energy” (p. 17). Thepaper recommends several physical solutions such as wandering paths, loops and tracks in indoor and/oroutdoor space. However, no details are given as to the kind of programmed activities for people withdementia and their implementation.In Gerdner and Beck’s (2001) survey of SCUs and non-SCUs in Arkansas, it was found that “thetypes of activities provided in SCUs and non-SCUs did not differ significantly” (p. 293). Examples ofactivities included: aromatherapy, social functions, simple exercises, beach ball toss, children andvolunteer visits, church, and sing-a-long. The survey described the state’s proposed regulations calling forprograms 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 MarianDeutschman’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 weregiven of the kind of programs involved. In Grant, Kane and Stark’s articLe (1995), based on a telephonesurvey 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, musictherapy, art therapy, ordinary task activities, intensive structured programs, programsusing special activities staff occupational therapy, small group activities, pet therapy,spiritual activities, and sundowning programs. Non-SCUs were more likely than SCUs touse reality orientation and one-on-one activities. (p. 572)In addition to comparing these features, Grant, Kane and Stark (1995) concluded that music therapywas the only program used by a majority of SCUs (55%). They broke down some of the programs intofurther descriptions, for example: large motor skill activities were broken into balloon ball, balloonvolleyball, 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 agreater number of activity programs on the unit at shorter intervals. Special activities staff includedpsychologists or other specially trained activities staff.The most important finding was that many non-SCUs use similar approaches to SCUs in stafftraining, environmental design and programming, which could mean that “some SCUs offer rather meagerspecialized 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 thevarious activities, no description of implementing the activities is provided.In Kuhn, Kasayka and Lechner’s article (2002), they make behavioural observations and comment onthe quality of life of 131 persons with dementia in 10 assisted living facilities in a Midwestern state in theU.S. Kuhn et al. examine “the types of interactions and activities taking place among residents and staffon a given day”. He notes “the lack of purposeful activity ...“(p. 291) for residents in LTC facilities andthe need for structured activities. Kuhn, Kasayka and Lechner compare smaller facilities that arespecifically planned for dementia care to larger facilities that are not dementia specific. This study found11that people with dementia in larger facilities interacted less with other residents or staff, while in smallerfacilities, residents were more interactive. The study found that “there were generally few structuredactivities in which residents engaged apart from eating and drinking” (p. 297). In all the 10 facilities in thestudy 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 variousactivities, “engaging in expressive or creative activity (code E)” (p. 295) was observed 4 percent of thetime. 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 towhat constitutes creative behaviour. However, other categories offered in the list could have beenclassified 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’sobservation 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 isdifficult 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 consideredas one of the “dimensions of care” (p. S23 5) important to quality of care practices. Chappell and Reidmentioned 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’ activitiesand overall, perhaps, the reason for the lack of detailed activities in the literature. “The specific type ofactivities that should be encouraged is difficult to document, and certain activities may be more suited toresidents 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 datacollected on this dimension was limited and therefore did not allow “the development of extensivecategories for this dimension” (p. S238). Chappell and Reid question the efficacy of SCUs in comparisonto non-SCUs. They concluded that SCUs and non-SCUs are similar in care implementations and suggestthat “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 wasfound that “no statistically significant difference was observed in the speed of decline for residents inSCUs and traditional units in any of the 9 outcomes” (p. 1340). This study’s view came from a medicalmodel emphasizing bodily functions such as, transferring, toileting, eating, walking, dressing, activities ofdaily living, bowel continence, urinary continence and weight loss. No other activities were mentioned. Astudy conducted in Finland in 1998 by Ulla, Johanna & Raimo, on the effect of respite care of people withdementia in SCUs, concluded that no deterioration of cognitive functions or mood were observed as aresult of the respite care and that “rehabilitation of demented patients seems to be possible to someextent” (p. 224). Activity programming is included in the features mentioned, which contribute to positiveoutcomes. However, some activities were mentioned indirectly for possible opportunities such asshopping, 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 studiesmentioned in this review that advocated for structured activities. Ulla, Johanna & Raimo see a limitedrehabilitation potential by providing an “atmosphere of approval, success and confidence” (p. 227) and bynot 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 moreeffective. This study did not support patients being “pushed throughout the day according to rules andschedules” (p. 227). No details were provided as to how the activities were integrated into the daily life ofthe patients.12A non-comparative study by Bober, McLellan, McBee and Westreich (2002) focuses on grouptherapy programs in SCUs, led by a social work philosophy to person-centred dementia care, presented amore developed practical and conceptual framework for art-based activities. This study responds to a gapin 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 ofsensory 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 olfactorystimulation” (p. 74). The article goes into a detailed explanation of the theoretical and practicalapproaches to the program. This is a clear change from previous studies, which touched upon the topics ofactivities in SCUs but did not explore them in depth. This qualitative study presents case studies andquotes 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 ofsubmission, no replication trials had been undertaken. Bober et al. (2002) stated that “Clinicians, with thesupport of researchers, need to explore the efficacy of both individual and group interventions with thispopulation in order to provide the best possible care” (p. 84).While the latter approach to art-based activities shows flexible and sensitive understanding of thecognitive 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 theprocess of data collection with less sensitivity to the participant’s own needs. This is a case study of oneindividual with dementia who expressed a desire to restore a family heirloom. Although the researcherwarns others about the complexity and frustration that was attached to the project, she still went aheadwith the consent of the family and the participant to conduct this study. She also suggests the use of apsychologist, psychiatrist, or other professionals from related mental health field. The art project ispresented in detail, down to the materials and painting technique. The replication of this study woulddepend 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 andHutchinson (2001) on the use of activities with persons with Alzheimer’s disease (AD). They open thetopic by discussing the difficulties in doing research with this population and sum up the current state ofresearch on activities engaging people with dementia. The study concludes that although “researchershave demonstrated interest in the use of activities with persons with AD, theoretical and methodologicaldifficulties, unclear findings and gaps exist...“ (p. 488). The review, based on the work of about 20researchers, 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 theknowledge, 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 decisionabout choice ofan activity, and how they used the activity. Rather, researchers alluded toa theoretical rationale or embryonic framework ... Theoretical models did not guide themajority ofstudies reviewed and were used with varying degrees ofclarity andintegration. Theory was never tested in the research, but was used to provide atheoretical perspective. (p. 490)In breaking down the types of activities used in the 33 studies, Marshall and Hutchinson found thatmusic was “the activity of choice” (p. 493). “Music was used alone in 16 studies and was combined withother activities in seven studies” (p. 493). Marshall and Hutchinson’s review goes on to discussmethodology.The literature review on arts-based programs in SCUs versus non-SCUs did not produce detailedstudies that adequately described arts-based programs and the physical envirOnments they occur in. It isnot clear as to why there is such a gap of information. Perhaps there are practical reasons that couldexplain the lack of detail, although most of the studies acknowledged the importance of arts-based13programs. 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, andunless they have a personal interest in the arts or have been trained in the arts, they seem to ignore theresearch that may provide further detailed information regarding arts-based programs. However, in theabsence of detailed information on arts-based programs for people with early to moderate dementia in theliterature reviewed so far, I will further examine individual areas of arts-based therapies such as musictherapy, occupational therapy, art therapy, the performing arts; drama, dance/movement and storytellingtherapies, reminiscence therapy and life review and poetry writing,Music TherapyMusic as an intervention that contributes to mood changes is not a new phenomenon. “It has beenused 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 Healthat the University of Bristol in the UK, gives an historical overview on the changes in the development ofmusic therapy as a profession. It started as an intervention with mentally challenged adults and withadults suffering from psychiatric problems, especially schizophrenia. According to her analysis, currentmusic therapy has its roots at the beginning of the twentieth century when hospitals invited musicians toentertain mentally ill patients to relieve mental stress. During World War II music therapy experienced asignificant growth and, although it was employed by the medical profession, it always was accused of alack 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 AmericansAct was signed. This act gave public recognition to the power of music to increase cognitive and psychosocial functioning and well-being in areas of working with children with learning and physicaldisabilities, with children and adults with visual and hearing impairments, with offenders, with AIDS andHIV patients, with hospice and cancer patients and with sexually abused people. Music therapy alsoprovides 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 ondefinitions 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 andtherapist 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 andKosloski (2000), Kneafsey (1997), Aidridge (1993) and Chavin (2002) state that music therapy allowstherapists to observe and assess a range of abilities and behavioral aspects of their clients. In a case studyBunt described ten different elements affecting behaviour and ability that form the theoretical basis ofmusic therapy: the ability to observe physical movement, organization of time and space, manipulation ofinstruments, 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 therole of other therapy providers who contribute to a team effort in treating clients. She mentions speechtherapists, psychologists, physiotherapists, occupational therapists, psychotherapists, arts therapists andsocial workers.Music therapy evolved into an intervention that “is not solely a means of occupying people for a shorttime with music as a diversionary and entertaining activity” (Bunt 1994, p. 9), but also evolved into a toolthat allows assessments of cognitive and physical abilities. Within the field of music therapy, Buntacknowledges four therapeutic models: “a medical model, psychoanalysis, behaviour therapy andhumanistic psychology.” (p. 16). The last model is of a major interest here and will be described in thenext section. Bunt also states that the current trend in music therapy is shifting from the medical model ofpatient and therapist relationships, where the therapist is in total control, towards a more balanced14relationship where clients have more input into their treatment or at least where the therapists becomeaware 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 ofapplications in this field. Among the articles on music therapy and dementia care, or music therapy andAlzheimer’s of a dementia type, there are studies that explore the influences of music therapy on peoplewith dementia. Smith-Marchese (1994) explored the effects of participatory music on reality orientationand sociability in long-term care settings; Sambandham and Schirm (1995) explored music as a trigger formemory that would contribute to better communications; Johnson, Cotman, Tasaki & Shaw (1998) testedwhether listening to a Mozart piano sonata may enhance spatial-temporal reasoning in people withAlzheimer’s; Ashida (2000) explored the effects of reminiscence music therapy on depressive symptomsin elderly persons with dementia; Brotons and Koger (2000) explored the impact of music therapy onlanguage functioning in dementia; Glynn (1992) looked into using music therapy as an assessment toolfor psychological, physiological and psychosocial conditions; Aldridge (1994) explored how music couldreduce 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 createstressful times for people with dementia and their caregivers; Hope (1998) explored how musiccontributes 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 andtherefore reduce the need for restraints.Strengths and Weaknesses as Music Therapy is Linked to Creative Expression Abilitiesand DementiaThe consensus among these researchers is that music has a significant impact on people withdementia 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 consensusand the variety of concerns raised regarding disturbed behaviours and various levels of abilities of peoplewith dementia, most of the researchers lack outright references to the creative expression of seniors withdementia and only on rare occasions allude to it as self-expression. Before starting the readings on musictherapy, I assumed that creative expression abilities of seniors with dementia would be discussedwhenever music was concerned; however, it was not so. Depending on the direction the therapy takes, theactivity described may stay only in the listening mode with no purposeful planned opportunities forcreative expression.Another interesting finding was that the term music intervention or music therapy is not necessarilylimited to certified music therapists. Music is not restricted to one group of therapists. However, the deepunderstanding and commitment to provide opportunities for people with dementia to express themselvescreatively was most apparent in literature produced by music therapists and not by healthcare givers, suchas nurses or psychologists. I don’t exclude the possibility that some healthcare givers are quite capable ofconducting interventions based on music activities. However, this realization did not come through theliterature on this topic. As the reading progressed I realized that selecting articles based on their titlescaused confusion since the terminology used by various healthcare givers was not always the sameterminology 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 namethem as such. Understanding that various terminologies may become a barrier to finding the biggerpicture of what music therapy is about, I rearranged my approach to reading source material and lookedfor concepts and ideas behind the titles and even behind the written text. I started to look more carefully atcase studies and arts programs as they were implemented, while looking for clues and hidden meaningsthat may indicate the authors’ awareness of the topic of creativity in dementia care.15The following sources were selected based on their deliberate inclusion of creative expressionabilities or activities in music therapy: In their literature review on music and dementia, Brotons, Kogerand 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 beingexposed to previous experiences), refer to music in connection with Alzheimer’s disease. Instead of usingthe 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 behaviouralneurology. They also observe that they did not find any studies that explored the ability of Alzheimer’spatients 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 offersno 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 healthcareprofessionals and not only by certified music therapists makes several references to the importance ofencouraging creative expression by people with dementia. In her words “Music is a temporal medium. Asit unfolds in a moment to moment flow, it moves us along with it, and we respond in spontaneous andoften creative ways” (p. 67). Aldridge (1993) refers to singing as “an activity correlated with certaincreative productive aspects of language...“(p. 27). Silber and Hes (1995) in Carruth (1997) report oncreative songwriting produced by patients with Alzheimer’s disease.Although a definition of creativity in these articles is missing or lacking, there is an acknowledgmentof the importance of creative expression as an independent factor that has the potential to improve thequality of life of seniors with dementia. Bunt’s book on music therapy (1994) stands out in providing richinformation that specifically supports activities that emphasize creative expression abilities, and herpractical 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 alwaysready to change direction to accommodate the needs of the people she works with. She takes account ofchanges moment by moment as the activity unfolds and makes sure her clients know that there is no rightor wrong way to play an instrument. She points out that the arrival of her music instruments “attractssome interest and curiosity” (p. 23), which are some of the attributes that constitute creative behaviourand 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 newis not accomplished by the intellect but by the play instinct acting from inner necessity. The creative mindplays with the object it loves” (p. 36). Bunt goes to great length in analyzing creativity, as described byFreud, Jung and others who laid some of the theoretical foundation to art therapy. Bunt bases her work onhumanistic psychology, which focuses on “helping people realize their full potential ... and growth ratherthan treatment.” (p. 42). She also includes issues such as: Respect for individuals and their uniquedifferences, 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 richimages” (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 indetail and are characterized as free floating sessions that start with listening to some music andimprovising on some instruments that may lead to a discussion on various topics. She stresses thepotential collaboration between music therapy and other creative arts therapies such as art, drama anddance movement. She supports the idea of creating resource centers that would include the varioustherapies. Although Bunt’s writing on music therapy stands out among the others in its rich material16supporting 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, youngadults and older adults with mental illness. Although not stated explicitly, she may be linking dementia tomental illness. In another brief reference to dementia, Bunt suggests indirectly that perhaps people withdementia revert back to their childhood. This position is acknowledged in the field of gerontology anddementia care but it is not well supported.Music Therapy and the Arts Room in a Therapeutic EnvironmentMy original intention was to search for information on spaces dedicated to creative expressionactivities 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 environmentthat surrounds arts program is totally ignored. Is it because the authors felt it was not in their domain ofexpertise to comment on it? Was the environment so unimportant that it was not included in the scope ofresearch, or was it simply a matter of being unaware of it? Perhaps the environment does not always playa critical role in some arts programs. Perhaps it is a reflection of the conditions many arts programfacilitators and therapists work under, who have to make do with whatever space is available due toeconomic constraints and the prevailing attitude that the arts are expendable and that arts programs are anitem of choice and not of necessity.Most studies on music therapy mention in general the location of the study such as at long-term carefacilities, 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 animportant 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 intomore detailed description. Mathews, Clair and Kosloski (2000) described the setting for their study indetail 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 ofthe dining table and briefly mentioned reading lights and the proximity of the dining room and livingroom to the nurses’ station and courtyard. Butterfield Whitcomb (1994) utilized her long time experienceworking with seniors with dementia and came up with several suggestions to improve the space used formusic therapy. She made a number of suggestions, such as eliminating all auditory stimulation except themusic that was selected, drawing the drapes, providing incandescent lighting, forming the group in acircle and paying attention to the acoustics of the environment. She also recommended small sittingrooms or even bedrooms for listening to music.The word environment carried different meaning to different authors. Authors from the field ofhealthcare refer at times to the environment as a symbolic representation for the ambience of a space orthe atmosphere created by the people using it. The ambience is usually created by staff and occasionallyby the designers hired to design those environments. Failing to find information on the arts room linkedspecifically to the needs of people with dementia, I turned to literature published on the therapeuticenvironment, 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 inthe scope of their work either, and briefly mentioned space allocations for arts activities.Occupational TherapyStein and Cutler (2002) relate occupational therapy most closely to arts-based programs. Both authorsapproach occupational therapy from a holistic point of view and call it Psychosocial OccupationalTherapy. Stein and Cutler consider occupational therapy to be “compatible with the UniformTerminology for Occupational Therapy (3rd ed., 1994, p. xii)”, and define it as:17an applied science and rehabilitation profession concerned with enabling individualswith disabilities to reach their maximum potential in performingfunctions in daily living,employment, and leisure, through the use ofpurposeful activities. The occupationaltherapist’s treatment goals are to maintain, restore, and develop physical andpsychological functions...(p. xii)In a longer version of the occupational therapy definition, Stein and Cutler include creativeexpression and arts and crafts, among others, in the description of purposeful activities. They also refer tothe environment as an important factor in assessing treatment outcomes. Occupational therapy started inthe 1 800s and has its roots in treating the mentally ill in hospital settings. Today, occupational therapy is acombination of two major influences that developed in medical care. One is holistic medicine, focusingon 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 mentalillness...“ (p. 28). Stein and Cutler identified four theoretical models for treatment that are based onmedicine, psychology, education and sociology.First is the psychodynamic model, which focuses on interpretation and analysis of personality andbehaviour. Freud, Adler, Jung, Rogers and Erikson are mentioned as major theorists who influenced thisdirection. These scholars are referred to repeatedly in arts-based programs and by adopting theirapproaches to psychological treatment, there are bound to be some similarities in the variousinterventions. Those similarities will be discussed later. The second theoretical model in occupationaltherapy is behaviorism, which focuses on changes to thinking, behavior and environment. The thirdmodel is based on the biopsychosocial model, which relates to sequential patterns of growth. The fourthmodel, systems theory, is the basis for the holistic approach in occupational therapy. It is an “eclecticmodel 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 withreferences 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 toaccommodate people with dementia. However, the definition did not change and their mandate continuedto 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 ischaracterized 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 ofBritish Columbia, believe that increased exposure to creative expression activities may increase new cellgrowth 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 asdepression, 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 functionintact and in this case would not be identified as mentally ill. I suspect that if Stein and Cutler had a betterinsight into dementia, they would have rephrased some of their statements such as: “... occupationaltherapy and psychotherapy are interactive processes that rely on the client’s active participation. In thisprocess, the client discloses personal information, identifies problems, and tries out new behaviors to copemore effectively with life tasks” (p. 188). Practitioners in dementia care know that it is extremely difficultor next to impossible to teach new information that will be remembered long enough to influence changesin 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 andborrows from art, dance, music, poetry, psychodrama and storytelling therapies. It is easy to criticize sucha formidable effort to cover so many areas of creative expression. However, the intentions of meeting a18client’s needs in the area of creative expression that suits them should be applauded. The concern, then, ishow capable is the occupational therapist in conducting each type of creative expression, and does itmatter? When Stein and Cutler discuss art therapy they see no problem in including artwork analysis as adiagnostic tool.Reid and Chappell (2003) raise the issue of activities programs for seniors with dementia in specialcare units. Although they found theoretical and empirical evidence in their literature review to support thevalue of activities in dementia care, they recognized the importance of how these activities wereimplemented and whether the staff was trained and available to facilitate those activities. No details wereprovided 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 thecomparisons 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 closerand cross over. Rubin (1998), an art therapist, writes on occupational therapy: “All these fields use art asone of many possible activities, forms of recreation, or ways of being constructively occupiedoccupational therapy teaches task analysis— a method of breaking a task into its smallest componentsespecially 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 therapyoccupational therapy is concerned with working on a conscious level, with the aim of developingtechnique in making products, using methods which are really more compatible with those of teaching“(p. xxiv).Occupational Therapy and the Arts RoomAlthough the environment was acknowledged in the definition of occupational therapy, this subjectwas rarely explored. Stein and Cutler’s book devoted less than one quarter of one page to it in a book of666 pages. In the section on the environment, while three questions were addressed, only two had directrelevance 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 Steinand Cutler’s book — an article by Perrin (1997), a senior occupational therapist at the well-knownBradford Dementia Group, discusses the possibility that the physical and social environments may notplay 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 himin kind of a plastic bubble, which is about 3 to 4 feet in diameter” (p. 940) and that staff have no probleminteracting 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 importantfactor 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 thewallpaper, as the smile on ourface as we enter the bubble; not so much the TV in thecorner, as the colourful magazine we look through with the client...(p. 940)Art TherapyJ.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 werecentral. In 1920, Florence Cane, a gifted teacher in New York, discovered that “art had power to liberatenot only the creativity, but also healthy psyches of” The Artist in Each of Us” (1951, p. 4). The fieldgained momentum when Victor Lowenfeld, “A sensitive educator, who studied the nature of creativeactivity 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, Edith19Kramer, who developed a theoretical approach to art therapy working with children, all contributed to theexpanding field. Many art therapists entered the field through the pathway of art education, bringing withthem the understanding of child psychology. Other known artists turned therapists are Don Jones, HannaYaxa Kwaitkowska, Robert Ault, Arthur Robbins, known for his Expressive Analysis, Helen Landgartenand Shaun McNiff.The field of art therapy is still going through growing pains and self-examination. Some in the fieldbelieve that the creative process is the main contribution towards healing and named it “art as therapyThose who felt that art therapy’s primary value was as a means of symbolic communication sometimescalled 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 asthey do.2. Freudian Psychoanalysis and Jungian Analytical Psychology— based on an understanding of thedynamics of the patient’s internal world.3. Humanistic approach— emphasizes the acceptance and development of individuals in the present4. 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 focuseson 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 authoritarianmodel of psychotherapy; pioneered the clinical use of hypnosis.8. Creative Reframing9. Phenomenological approach— emphasizes the uniqueness of each individual experience of realityat 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 andinappropriate behaviours that provide the base for therapeutic intervention.12. Cognitive Therapies— focusing on habitually distorted thought processes. Patients are taught newand 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 (specialeducator), and Geraldine Williams (art therapist) combined the developmental therapy and theadaptive 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 manyways 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 forenjoyment, 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 anddementia, I selected a sample of authors from several arts modalities as well as occupational therapy inorder to represent the larger community. An exhaustive examination of the full extent of the literature isbeyond the scope of this dissertation. I also contacted the Director of the Vancouver Institute for ArtsTherapy for advice and had numerous discussions with her on the role of art therapy and the population it20serves. These discussions helped tremendously to sort out some misunderstandings and brought to lightthe similarities and differences between arts therapy and my program on creative expression activities forseniors 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. Thesepublications vary in their philosophical approach to current art therapy interventions. Although arttherapists claim expertise in working with a wide range of clients, the following review will bring to lightwhy there are so few articles on art therapy with a focus on dementia. One example in particulardemonstrates the lack of knowledge of dementia as a disease. Cathy Malchiodi (2003), an internationallyrecognized authority on art therapy, lists the people art therapy serves. Among them are “people withcancer, 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 includes72 different brain diseases and Alzheimer’s is one of them.Teresa DaileyT. 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 explainswhat art therapy is: Art therapy is the use of art and other visual media in a therapeutic or treatmentsetting (p. xii).Therapy involves the aim or desire to bring about change in human disorder .... Effectivetherapeutic procedures are those which result in fundamental and permanent change,and so, as Ulman argues, therapy is “distinguishedfrom activities designed to offer onlydistraction from inner conflicts; activities whose benefits are therefore at bestmomentary. (p. xiii)Dailey states that although painting is somewhat therapeutic to the artist, the final product is an end initself, and is exhibited as a work of art; the process of creating it is secondary. ... In therapy, the personand 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 peoplewith 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, andstimulation”(p. xviii). She also places less emphasis on the final product and sympathizes with people inhospitals and institutions, where “art therapy is probably their only outlet and opportunity for individualexpression, stimulation, and creative occupation” (p. xviii). For them, Dailey suggests a “variety ofsensory and tactile experiences; making things with others help interaction, communication, andawareness of other people” (p. xviii).The initial thought of Dailey’s view of art therapy is that there is an expectation of rehabilitation forclients entering the treatment of art therapy, except for mentally ill people with whom the expectation islower in terms of artwork quality and their ability to produce it. Perhaps she is right in her view, but whatis continually disturbing is the tendency to lump the elderly in long-term care facilities together withmentally ill people without discrimination. The lack of understanding of what dementia is all about isapparent. Dailey’s book was published in 1992, but must have been written in the late ‘80s, when the newperson-centred approach to dementia care was in its infancy and not yet a recognized force. Thesensitivity and the compassion for the elderly with cognitive and physical disabilities are present, but theknowledge of dementia as a disease is lacking.This is most apparent in one chapter in Dailey’s book, written by Suzanne Charlton (1984) whodiscusses art therapy with long-term residents of psychiatric hospitals. Charlton states that “[O]lder21people often develop fixed thought processes with a deterioration in their ability for abstraction andexpression” (p. 19). Such a statement would draw harsh criticism from scholars in the field of gerontologywho 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 notuniversal, so are the symptoms of dementia, which differ from person to person and take on variouscognitive and physical impairments. Not all seniors with dementia suffer from depression and not alldisplay mental disorder except for forgetfulness and disorientation. It all depends on the stage of thedisease, 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 residentskeep the length of the session short” (p. 19). Based on my experience working with seniors withdementia, a rich presentation of meaningful resource material was one of the highlights of enjoyment anddelight that contributed towards improved communication, engagement and interaction with seniors withdementia. It was also a source of inspiration. The Creative Expression Activities Program was planned tobe long enough to allow meaningful socializing, gain trust of the participants, refresh memories orprovide resource information for immediate use, and allow seniors to take their time to digest informationand react to it.DaIley focuses mainly on children, adolescents, young adults and the mentally ill. People withdementia are included in the group of the mentally ill. Although there are gaps in knowledge of dementiaas a disease and the care for it, arts therapy still contains many elements that are important for seniorswith dementia. With time and broader education, arts therapy will adjust to the specific needs of seniorswith dementia. It is almost redundant to say that Dailey understands the importance of providingopportunities for people to express themselves creatively, since her occupation is focused on providingsuch opportunities. In her writing she sums up her thoughts about creativity: “Any theoretical approach toart 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 socialinteractions. Depending on the approach to intervention, “Art therapists are participants as well asobservers in the therapeutic process” (p. xx).The art therapy session is basically divided into two stages: the first stage involves painting or othercreative activities, while the second stage is a discussion that focuses on the art produced, how it makesthe client feel and how it reflects their feelings. Dailey shares some concerns regarding the artwork’sanalysis produced during the intervention: “Even the most experienced art therapist cannot be totallyconfident about correct interpretation without active participation and co-operation from the client withinthe therapeutic encounter” (p. xx). This statement has implications when interacting with seniors withdementia: a. How do we define co-operation? b. Would stories based on illusions still be considered asco-operation? c. How can drawings based on active participation but on no memory recollection beapproached in the process of art analysis? The most critical question that is yet unanswered is: is there avalid 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 pastmay have been forgotten and so is the present? Why analyze the work of seniors with dementia ifrehabilitation is not a serious consideration in a progressive disease with no cure? Charlton (1992) inDalley’s book does bring up the issue that art analysis is not always the right thing to do, especially withlong-term residents who just want to paint. In this situation according to Charlton “... therapeuticinterpretation are neither appropriate nor beneficial” (p. 187). It is not clear if people with dementia areincluded 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 missingan important source of information by not going into art interpretation for therapeutic reasons. I alsoasked myself whether my direction in trying to understand creative expression and dementia should beexplored under the wings of arts therapy. The more understanding I gained about art therapy and aboutdementia as a medical condition, the more I realized that there was no point in using the arts for22psychoanalytical purposes. I was there to enjoy the moment together with seniors who have dementia. Ihad no need to probe into their problematic behaviour or attempt to change it— even though I wished toimprove problematic behaviour, such as restlessness, pacing and shouting. However, the prevailing goalwas to improve the quality of life of seniors with dementia. And so, this approach did not become part ofthe 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 ofevery treatment programme” (p. xxvi).Dailey’s View on Art Therapy and the Therapeutic EnvironmentDailey refers to the therapeutic art room briefly here and there in her book; Chariton actually devotesa separate title to it: “The art room” for mentally ill patients in psychiatric hospitals. “The art roomprovides a setting where residents can experience trust, experiment with different behaviour, exercisechoice, and feel a sense of competence” (p. 175). She states that most hospitals “lack space and facilitiesfor creative work” (p. 185). She would like to see art rooms where residents are allowed “to get messy, toexperiment, to ponder, or to invent” (p. 185). The art room should include stimulating things such asbooks, 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 areasindividuals can claim as their own, doing activities such as “pottery, weaving, and printmaking” (p. 186).Shaun McNiffMcNiff is another key scholar in art therapy whose work was recommended by Lois Woolf, inparticular his book Fundamentals ofArt Therapy (1988). Out of the three publications recommended, itwas the writing by McNiff that caught my imagination and became a source of inspiration. As a result, Ihave been reading most of his writing; his philosophical approach to arts therapy and to the engagementin the arts in general is very relevant to creative expression in dementia care. Although I differ with himon several issues, the overall concept of going with the flow fits within the program on creativeexpression 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 morewith them ... whether in words or images, they are concerned with exchange and opening to whateverpresents itself (p. 6). McNiff also states that art therapy is about contradictions, “[T]he Psyche is not aspredictable as the highway ... It is not fixed in material forms” (p. 7). He also tries to reassure therapistswho 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 theoreticalfoundation for qualitative research, such as ethnography and grounded theory, and may lead to beneficialobservations in a clinical setting. Although the overall themes in the creative expression activitiesprogram are pre-planned and the first segment of each session is directed through visual and verbalstimulations, the rest of each session is free flowing and ‘spontaneous’ as McNiff calls it (p. 5). By havingall sessions planned in advance, Lisa, an art educator who became an art therapist, commented in a dialogwith McNiff that advanced planning to reduce risks of chaos in the classroom might have jeopardized theflow of creativity (p. 7).McNiff believes that children in unstructured lessons do not need much to start drawing. However, inmy experience, seniors with dementia need to be stimulated and provided with information to initiate theprocess of creative expression. Pre-planned sessions versus spontaneity raises very interesting questionsthat are worth exploring in future research. Would seniors with dementia initiate art work if: a) artsupplies were displayed in view and in easy reach? b) Would they start drawing if a facilitator was notpresent? In short, c) What would it take to engage seniors with dementia to become involved with artwork?23McNiff does not limit himself to the visual arts only. He believes in endless possibilities within themedia. He is interested in what other colleagues are doing with other materials and likes to integrate themin his own work, such as rhythmic expression, storytelling and the performing arts (p. 29). He sees themotions of dance when helping a person hold a brush and he likes to talk during the intervention. UnlikeDalley, 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 cando... The label serves the purpose ofkeeping people in their designatedplaces. This canbe catastrophic with psychopathological labels. Even positive and illustrious labels, titlesand 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, tofind out what they want and meet them where they are at that moment. As stated before, he is not worriedabout unpredictable situations that may not fit “within the confines of the psychopathological diagnosticdrawing test clichés because we fear what we can be, what we are not” (p. 20). He continues to explainthat “Interpretation is both intuitive and intellectual, verbal and non-verbal. Art interpretation is sensualand 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 valuesare not based on interactive process, and this makes it unnaturalfor them to worktogether with clients ... Ifimages are generated by the patientfor the purpose ofdiagnostic 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 iswhatever 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 ofthe person. Anything, afound object, or a series oflines can become art. The only limitsare 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 graphicexercises, since no soul was attached. Occasionally someone manages to produce an artistic product.McNiff’s View on Art Therapy and the Therapeutic EnvironmentMcNiff sees a link between the environment, health and creative activities. He focuses on theimportance 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 andart therapy colleagues has shown me that they hungerfor it too, and the phenomenon ofart therapy needs the studio. 1ff walk into a medical environment with its chemical andantiseptic smells, my soul is aroused only to the extent that I want something else. Themedical environments can sometimes be the antithesis ofart. The studio summons theartist in me and the artist in art therapy. (p. 135)24J. A. RubinIn Art Therapy: An Introduction (1998), J. A. Rubin’s book is the third publication recommended byLois 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 withdementia. Here is Rubin’s definition and description of art therapy:combination ofgenuine expressive art activity with some kind ofthoughiful reflection on theprocess ... Infact, it is what distinguishes it most clearlyfrom related disciplines. In almost allapproaches to art therapy, there is an image-making time and a reflection time. The proportionsmay vary, and the thoughtful component may be silent. Art therapy, however, is the involveddoing p1us the relaxed reflection ... Creating art can indeed be therapeutic, and verbal therapycan 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 centralin effective art therapy is knowing how to observe another’s creative process acutely, sensitively andunobtrusively. Becoming aware of all the temporal, spatial, and other non-verbal aspects of people’sbehaviour with materials takes time and practice (p. 135). Rubin then quotes Robert Ault, one of the keyfigures in the art therapy field, who wrote in an unpublished 1983 manuscript, “a picture may be worth athousand words, but to observe the making of a picture is worth ten thousand words” (p. 135). Accordingto Rubin, the best way to understand what art therapy is all about is to observe an actual session, and evenbetter is to participate in it.Rubin brings to light a debate within the art therapy community regarding the multi-arts therapy orgeneralist approach, as some prefer to call it. Unlike McNiff and his colleague Paolo Knill, Rubin seemsreluctant 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 evokeandfacilitate expression in more than one artform, such people are rare. More often, atherapist has training in one creative art modality, along with an openness to andcomfort with others. (p. 73)Although she has some concerns about the multimodal approach, she realizes the growing interest init. It is evident in Britain (p. 78) and in Canada (p. 80). In Canada she mentions Stephen Levine and EllenLevine, who co-direct a training program in expressive arts therapy in Toronto (ISIS-Canada). “Althoughmost art therapists are still trained and skilled primarily in the visual arts, there seems to be a greateropenness to the use of other art forms than in the past” (p. 80). Rubin also differentiates between what istherapy and what is therapeutic, “If the primary purpose of the activity is learning and/or fun, it iscertainly therapeutic, but it is not art therapy” (p. 63).Rubin’s View on Art Therapy and the Therapeutic EnvironmentThere is a brief comment in Rubin’s book regarding the therapeutic environment: “Regardless of whatis done, there are a series of necessary steps ... They begin with setting the stage, a major element inpromoting expression in art therapy. A well-prepared environment can inspire creativity, whereas aconfusing or uncomfortable one can have [a] most inhibiting effect” (p. 280).25D. FausekD. Fausek produced A Practical Guide to Art Therapy Groups (1997), whose title promised aninteresting look at the subject. Some of Fausek’s suggestions seem to fit less well with seniors withdementia. 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 ownclassification of abilities. One example is a suggestion for rubber cement glue to be used with low-levelclients. I am puzzled by this suggestion, since low-level clients may end up taking it in their mouths orspreading 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 artworkserves here as a tool for communication and therefore as a platform for non-verbal communication. Shealso has no problems helping hand-over-hand if needed. Fausek likes to display the artwork for enjoymentand stimulation.The Performing ArtsI 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 materialhas been written on them. And, as the two are linked together under the title of the performing arts, theyshare many characteristics. If anything surprised me in the process of reviewing literature on creativityand dementia, it was the literature on therapeutic performing arts. I was not expecting to see it linked to aresearch inquiry for assessments purposes and outcomes. Perhaps, like many others, I assumed that theperforming arts are there to draw on our emotions and provide artistic experiences. But to try and measurethe impact on people with dementia is an interesting concept. Is it then measurable? Do we have the toolsfor it? If not measuring, then how are we going to describe drama, dance and movement? Do we evenhave the language to describe them? And what are we going to describe? It is clear to me more than inany other form of artistic therapy that this research needs to be conducted by the artists themselves. Theyneed to be an integral part of it, intimately immersed in it, fused with the process and with the clientsinvolved.Dance/movement therapy dates back only as recently as the 1 950s. The dance/movement therapy wasstarted by several women who used dancing to interact with people who suffered from severepsychological disturbances (Levy, 2001). The new field got organized under the American DanceTherapy Association (ADTA) in 1966 “to establish and maintain high standards of professional educationand competence.” ( ADTA is a member of the Creative Arts Therapy Coalition thatincludes 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 thepsychotherapeutic use of movement as a process, which furthers the emotional, cognitive, social andphysical 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, daycare, community mental health centers, developmental centers, correctional facilities, special schools andrehabilitation facilities. They work with people of all ages both in groups and individually. They act asconsultants and engage in 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 foundthat discussed dancing. One article by Milchrist (2001) is an autoethnographic narrative on therelationship between the author and her mother who has dementia. The author initiated dancing with hermother 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 thedisease. Milchrist tells us how her mother enjoyed the dance and how they could continue tocommunicate although verbal communication was almost impossible. It is a wonderful first-hand storythat had many moments ofjoy in spite of the limitation imposed by the disease.26The second article is by Palo-Bengtsson and Ekman (2002), who discuss social dancing with peoplewith dementia residing in a nursing home in Stockholm. It is a phenomenological study that explores adancing 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. Theearlier-trained social patterns, old social habits, and general rules seemed to awaken to life in the personswith dementia” (p. 101).Palo-Bengtsson and Ekman (2002) also observed that the people with dementia would wait for theircaregivers to initiate the invitation to dance and then would follow them. The study concluded that it wasimportant 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 andamusement” (p. 101) demonstrated by the people with dementia, creativity was not included in the list ofobserved behaviour. I wonder why creativity was important enough to be linked with the caregivers butwas omitted when describing the people with dementia. Was it because of low expectations that peoplewith dementia were not capable of creative expression? Or did the authors have a different understandingof what constitutes creative behaviour? The physical environment is described with very few words: “Thedances 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 andCommunity and an Associate Professor in the Department of Theatre and Dance at the Peck School of theArts, University of Wisconsin-Milwaukee. Her creative work includes nearly a dozen plays and publicperformances. Davis-Basting, who received her Ph.D. in Theatre Arts and Dance from the University ofMinnesota in 1995, continues to direct the TimeSlips Creative Storytelling Project, which she founded in1998, and makes numerous presentations on creativity and aging across the United States. TimeSlips is aninnovative method of group storytelling by seniors with dementia. In the training materials for theprogram, she writes:Creativity is: adding something new to the world, how we know ourselves, how we growourselves, how we connect to others ... through creative expression, we share ourselvesand connect to others. Creative expression is importantfor everyone, but it is even moreimportantfor those with dementiafor whom other avenues ofself-expression can beseverely 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 TimeSlipsunder the direction of Davis-Basting, I observed the interaction between Karen and her seniors withdementia. The stories that were produced in a collective effort by as many as 20 seniors with dementiabrought 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 dramaintervention. In one by Lepp, Ringsber, Holm and Sellerjo (2003), the authors, who are mainly from thenursing profession, refrained from calling it drama therapy. The focus of their study was on thecaregivers. Two categories emerged from the analysis: interaction and professional growth. What was sointeresting in this article was the fact that the caregivers were surprised at the level of expressiondemonstrated by their patients with dementia. Although reluctant to join the program, the caregiversfound the program personally rewarding while their patients bettered their quality of life; they “showedtheir feelings, both joy and sorrow, more openly, their self-confidence grew and they showed greaterinterest in their surroundings” (p. 873). Drama intervention for therapeutic reasons is so new that theauthors in this article had to rely on the defmition of drama in education: “. . . defined as the dynamicembodiment of events involving human beings, is described as a valuable tool for intellectual andemotional growth” (p. 875).27In 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 andconversations, designed especially for seniors with dementia, worked well. There were no references tothe physical environment.Drama programs, drama therapy, drama intervention— whatever name is adopted in the future — issuch a new area that empirical literature on this topic is next to nonexistent. Anecdotal reporting frompractitioners in the field of creative expression programs is rich in stories of interesting experiments usinga host of activities including drama. It is difficult to isolate drama from other creative expressioninterventions when it contains so many elements of others. Based on the literature review so far, there isundoubtedly a great deal of overlap among the various models of creative expression interventions. Manytry to box combined interventions under the roof of one discipline or another, but in reality it is the mix ofinterventions that appeals so much to so many of the facilitators who work with seniors with dementia.Reminiscence Therapy, Life Review, Life Reflection and StoiytellingReminiscence, life review and storytelling are all ways to communicate with others and expressourselves verbally. A literature review revealed a wide range of publications that focused mainly on thesetopics in regard to people of nonnal aging. However, specific literature on reminiscence, life review andstorytelling in regard to people with dementia is less available. Ten articles and two books were found tobe relevant to this discussion in the pursuit of creative expression abilities demonstrated by seniors withdementia and the environment associated with these activities. Although the literature differentiatesbetween reminiscence, life review and storytelling, based on my experience, these elements areinterchangeable 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 960sby Robert Butler (1963). The fine differences are important because they are linked directly to thequalifications and training a facilitator may need to acquire to handle the analysis part of life review orlife reflection. Reminiscence therapy and storytelling could be left at the first stage of expression withoutgoing 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 asthe remembering ofevents plus thefurther analysis ofthese events. (p. 149)the distinction refers to the extent and sophistication ofthefurther analysis andpossibly also the intentionality ofsuch analysis ... Reminiscence is defined asreconstructing life events from memory, and lfe review is conceptualized asreconstructing life events from memory plusfurther analysis (explanations andevaluation) ofthe materials. (p. 150)The function ofeither ofthe two processes, reminiscence and life review should bedetermined only in a second step ... for instance, establishing intimacy could be achievedboth by sharing memories and by uncovering insights about one life. Reminiscence, inparticular, may be linked tofunctions such as boredom reduction, oral history, orconversational pleasure. Functions specflc to lf’e review may include, for instance,alleviating depression, teaching others, solving a problem, enhancing life insight andwisdom. (p. 149-1 50)In her literature review on this topic, Staudinger finds that the aim of life review is “to repair andreturn to normal levels of functioning ...“ (p. 154), while remembering the past usually follows achronological timeline. She felt that a new term needed to be introduced to capture “single life events andsequences of events” (p.154) and named it life reflection. In an empirical study of life reflection versus28life review, Staudinger (2001) found that older participants engaged in life reflection to “balance andintegrate their life as lived” (p. 157).Although Staudinger does not refer directly to creative expression abilities in discussing lifereflection, she does bring up elements that follow the definition of everyday creativity such as growth inself-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 withdementia, used triggers such as: written or taped autobiographies; pilgrimages, either in person or throughcorrespondence; 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 ethnicidentity (p. 760).Although literature on reminiscence in normal aging is growing, KasI-Godley and Gatz concludedthat “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 lifereview therapy with people with memory impairment. On the contrary, Kasi-Godley and Gatz refer toCook (1984) and Kiernat (1979):that reminiscence may be particularly importantfor demented individuals’ psychologicalhealth given that the progressive deteriorating nature ofthe disease erodes the ability toachieve present successes and makes individuals increasingly dependent on pastaccomplishmentsfor a sense ofcompetency ... demented individuals retain much ofthecapacity to recall and integrate the past because remote memory is spared through mostofthe disease process. (p. 761)Although the memory of factual details such as dates, names and locations may be affected withseniors with dementia, other aspects of memories may still be intact. In my interactions with seniors withdementia I have witnessed numerous similar situations, for example, one may remember learning how toski, but may not remember where and when it took place. One may remember being married, but haveforgotten to whom and if children were involved. Comments such as “I must have been married at somepoint, aren’t we all?” are common. This fascinating behaviour has been observed by researchers andpractitioners in the field of dementia care and was discussed in depth in Question One. Understanding thefine differences of how memory manifest itself in people with dementia is most important, especiallywhen facilitating sessions on creative expression activities.Until I read Patrick Colm Hogan’s (2003) book, The Mind and its Stories, Narrative Universals andHuman Emotions, I struggled with finding literature that would support my approach to creativeexpression activities where fabricated stories told by seniors with dementia were as important andmeaningful as those perceived to be true stories. One could never be absolutely sure whether a story mayalso include experiences of others to be claimed as their own. Hogan compares this behaviour tochildren’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 likelythat authors incorporate autobiographical material even in entirely nonautobiographicalworks (for example, in filling out characters in historical novels) throughjust such aprocess ... retellings supports not only our account ofaesthetic responses, but parallelaccounts ofartistic creation.” (p. 69)So, according to Hogan (2003), we are all capable of incorporating experiences of others into our ownstorytelling intentionally or unintentionally. Although Hogan does not discuss dementia, he does discussthe link between literature and the human mind, which includes storytelling and memory and which he29calls “verbal art” (p. 3), where people share their “ideas, perceptions, desires, aspirations, and ... emotionsIt is an activity engaged in by all people at all times ... something people do, and always have done, inall parts of the world...“ (p. 3). Verbal art is a form of creative expression. While Hogan calls it verbalart, 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 foradapting to stress” (p. 298). All of these authors support the definition of everyday creativity that wasdiscussed previously. Bernie Arigho (1997) summarizes very well the relationship between reminiscenceand creativity:The success ofreminiscence work is measured in terms ofthe extent to which it enablespeople to participate in meaningful and enjoyable activities. Thefocus is on being activeand creative in the here and now, though the inspiration is derivedfrom the there andthen. (p. 188)From medical observation, we learn that people with dementia suffer from illusions and thatfabricating stories is considered a common symptom of the disease. From a medical point of view this isproblematic behaviour, less tolerated and in need of being treated. From a societal point of view, there is aperception that these people may have lost their minds, they may be considered unreliable and living intheir own world, one that is disconnected from reality. However, if we accept their reality, we can helpremove the stigma attached to their behaviour. The change needs to occur in our attitudes towards peoplewith dementia. By creating a friendly and accepting environment, we allow the persons within the diseaseto continue to live their life to the best of their remaining abilities. Cheston (1996) in his article Storiesand metaphors: talking about the past in a psychotherapy group for people with dementia reacts to thecommon perception that people with dementia are engaged in meaningless talk, “their memories aredefective, and their reminiscences are of little importance...” (p. 598). He argues “that there are otherstories to be told about the talk produced by people with dementia if we can only allow ourselves to listento the poetical, the metaphorical aspects of language” (p. 598). He also sees:Self-narratives and stories... as a mean ofcommunication and as a focus forexploration. They can permit a rich world, a place ofre-membrance, a re-creation ofpeople, ideas and images so positioned and constructed that they lend new shape andform 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 wellwork with it instead of against it. The question is then, how do we go along with realities experienced byseniors with dementia? How does reality manifest itself in the physical environment and in humanrelationships? The answers lie in our services, interventions, planning and in design solutions for peoplewith dementia. For example, in a documentary Memory Lane (2003) on architectural design for peoplewith dementia, one solution provided was very imaginative. Given the average age of seniors withdementia 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 creamparlours, cars, music, dances, food, customs, and so on. In this documentary, a Long-term care facilityrecreated a section of a street along its property that was designed to replicate the 1 950s in a typical NorthAmerican urban setting. The ‘neighbourhood’ provided opportunities for seniors to sit in coffee places andpurchase 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 withdementia who can still remember some of their past. Speakers at an American Society on Agingconference on generation gaps in Denver, 2001, commented that about every ten years, there is asignificant shift in the western society’s taste in clothing, music, customs and so on. If that is true, then thepresent generation of Baby Boomers could adjust the make-believe street to include Elvis Presley, BobDylan, mini-skirts, portable phones, fat-free foods, photos of known citizens and politicians and more.30This 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 ofconstantly repeating information that may sound foreign, meaningless or hard to retain, seniors withdementia would be less stressed if we did not confront them or try to train them in the hope they maychange. A study by Woods (1992) on reality orientation has shown that long-term memory retention wasnot 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 behaviouralfunctioning” (p. 769).In comparison to reality orientation that focuses on training individuals to be more aware of the timeof 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] meetpsychosocial and developmental needs” (p. 299). Still, reminiscence therapy is not appropriate foreveryone and may have dangerous consequences (Thorgrimsen, Schweitzer and Orrell, 2002). Carefulconsideration needs to be exercised. If facilitators are not qualified to handle crises, there is a need toarrange backup professional help in case of emergency.Reminiscence, Life Review, Life Reflection, Storytelling and the Therapeutic EnvironmentIn the articles on reminiscence as it is linked to dementia care, very little attention is addressed to theenvironment. The source for reminiscence therapy by Joyce L. Harris (1998) mentioned the physicalenvironment:A conversational grouping in a small, quiet, well-lit area is idealfor a reminiscencegroup. A small area is likely to have better acoustical properties which creates a betterlistening environmentfor everyone. A small area also creates afeeling ofgreaterintimacy among group participants (p. 46)Harris also points out that furniture and seating arrangements are very important contribution tosuccessful reminiscence sessions.ReviewOnly seven years ago when I started to look for practical ideas to implement in my work with seniorswith dementia, I was struck by the lack of information. What I did find was inappropriate, comprisingchild-like activities that did not reflect the seniors’ cognitive and physical abilities. Nor did I find detailedinformation that made a link between seniors with dementia, their abilities to express themselvescreatively, and the physical environment to accommodate these activities. Today’s literature offers a widevariety of arts-based programs for seniors with dementia; however, there are still major concerns to bedealt 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 whatcreativity is all about. They may understand it intellectually, but depending on their definition ofcreativity, 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 psychologicalassessments of seniors with dementia.Expectations. There is a tendency to lump people with dementia with the mentally ill withoutdiscriniination.31There 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 withseniors with dementia. However, some may enjoy an appropriate challenge that may reflect respect andappreciation of their remaining abilities.Programs. Most articles focus on methodological aspects of art-based programs while very fewdiscuss how those programs are implemented.There is a shortage of meaningful programs, with purposeful and diverse activities. There is a needfor 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 inchanging 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 considerationmay 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 interventionamong facilitators who work with seniors with dementia. However, there is definitely confusion about theboundaries between various programs.Facilities. In reviewing the literature on special care units (SCUs), an important finding was thatmany non-SCUs use approaches similar to SCUs in staff training, environmental design andprogramming. This could mean that some SCUs offer rather meager specialized features that SCUs arenot 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 pushedthroughout 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 smallerfacilities, residents were more interactive.One observation made by Perrin (1997) may have a great impact on the architectural design andcommunication with seniors with dementia. Perrin found that people with dementia respond best whenother people and objects are placed within 3 to 4 feet diameter around them. In Perrin’s words, theenvironment has ‘shrunk’ to envelop the person with dementia in kind of a plastic bubble and that staff hasno problem interacting with this group as long as they are close physically to the clients and within thesuggested ‘bubble’. Perrin brings up the notion that if the closeness encourages interaction, it may be animportant 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 ourstimulating objects such as art materials, furniture arrangements, locations of easels, strategically placedinstructors and so on.New Directions for Research and Implications for Practical ImplementationNumerous 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 needto take these limitations into account.Lack ofunderstanding. Need for programs that educate medical personnel, potential caregivers andarts-based program leaders about dementia— differentiating mental illness from mental deterioration andconsidering the implications for care and activities.32Expectations. Need for research on seniors with dementia to study their reactions to programs in caresituations. 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 withdementia, on caregivers and medical personnel as it is linked to creative expression activities.RecommendationsThe literature review revealed that there is a strong need for a multidisciplinary program of creativeexpression activities for seniors with dementia. In order to achieve it there is a need for educationalprograms to train facilitators that would combine expertise in dementia care with programs on creativeexpression activities in a comprehensive way. In addition, architectural schools need to include courses ondesigning for the elderly with a focus on dementia.There is a need for forums where researchers and practitioners from various arts-based programs canmeet to exchange ideas and create new alliances. Ideally, such forums would include input from themedical community.A strong pattern is emerging that a mix of arts-based programs is the most popular interventionamong facilitators who work with seniors with dementia. There is a great deal of overlap among thevarious models of creative expression interventions. As they grow closer and cross over, many try to boxcombined interventions under one discipline or another, but in reality it is the mix of interventions thatappeals 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, especiallywith a focus on what works and what does not work with these seniors. There are no studies that explorethe ability of Alzheimer’s patients to appreciate artistic expression. This is, potentially, a new area forresearch.Researchers should be encouraged to cross the boundaries of their own fields and expertise. Theyshould be allowed to stretch their imagination and develop fresh new ideas without being constrained inthe name of science. I believe that every bit of new information has the potential to spiral into newadventures and trigger additional new thoughts. Working with seniors with dementia is full ofopportunities to learn about them and about oneself. It is a mutual journey where the researcher and theseniors 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 howseniors with dementia experience it. The recent literature on research in creativity focuses on the work ofseveral prominent scholars. It contains their definitions of creativity to further develop an understandingof what creative expression means and how it manifests itself (fig. 2, see page 9). It is based mainly onthe Handbook ofCreativity (1999) that describes the work of Sternberg and his 30 colleagues, onCreativity, Mark Runco’s (2004) most recent work, and on Art, Mind and Brain: A Cognitive Approach toCreativity by Howard Gardner (1982).Following this review, I will provide selected definitions of creativity followed by a discussion ofhow they follow or contradict the assumptions and approaches to research on creativity and dementia Ihave pursued. These definitions may derive from quantitative or qualitative studies and from less rigorousstudies due to the complexity of this topic and the difficulties arising from conducting research in thisfield. Gaps in the understanding of the two domains of creativity and dementia and in the combination ofthem will be identified to provide the base for a new definition that may be more appropriate to researchon creativity with seniors with dementia. The new definition will provide a fresh starting point and willcontinue to evolve as the inquiry progresses.33Eight models were reviewed for their appropriateness to tackle research on creativity and dementiaand although no one specific model was definitive, many of these models provided important informationas 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 articleCreativity, and Gardner’s (1982) cognitive approach. Although Sternberg and Runco’s work are morerecent, I found that Gardner’s approach fills in gaps of information missing in the others and appears to bemore relevant to research on creativity and dementia.Emerging Approaches to Creativity ResearchRobert Sternberg (1999) introduces the work of 30 scholars in the field of creativity and identifies sixapproaches 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 singlecorrect answer” from their subjects. The answers were quantified and rated for creativeabilities based on comparative scoring of creative versus non-creative persons. Psychometricassessments take place in a controlled environment. This control may limit the ability ofcreativity to be expressed spontaneously and in an unpredictable manner.b. Experimental: the study of creativity in which subjects are engaged in creative thinkingthrough solving problems. The aim is to identify factors that improve or inhibit creativethinking. As in the psychometric approach, the experimental approach utilizes quantitativemeasurements in controlled environments while analyzing tasks prepared in advance thatwere administered to the subjects. The aim of this approach is to identify the various phasesin creative thinking a person goes through. According to Ward, Smith and Finke (1999),research on differences between creative and non-creative thinking in experimentalobservations found two kinds of cognitive processes: first, generative processes based onexisting knowledge and which are part “of ordinary minds” (p. 190); this knowledge may ormay not inhibit creativity. Second, processes that are of an exploratory nature and, based onpotential function, can be untested proposals that are marked by “originality andappropriateness” (p. 191). Ward, Smith and Finke report on examples of exploratory andgenerative 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 undervarious restrictions. They may be generated with a specific goal in mind or for an open-endedsituation (Ward, Smith and Finke, 1999, p. 192).c. Biographical: A qualitative, richly detailed narrative study (Gruber & Wallace, 1999) of acreative person through a single case history or through a comparison between creativepersons. The biographical approach can also be studied through quantitative analysis of agroup of creative people (Simonton, 1999). The aim of this approach is to identify factors inlife events that foster creativity. A positive aspect of this approach is that the subject isstudied in a personal authentic environment, in contrast to the controlled environments usedin psychometric and experimental approaches. The down side of this approach is the concernthat the findings of one case study may not be applicable to another case. However, thisapproach 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 brainactivities as the subjects are engaged in creative thinking (Martindale, 1999). None ofSternberg’s 30 colleagues in the Handbook ofCreativity discusses how biologicalimpairments 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 onempirical studies, they concluded that intrinsic motivation is “conducive to creativity” (p.299) and is generated by the individual for enjoyment. Extrinsic motivation is defined as34having to meet external requirements such as awards and competitions. This motivation isharmful to creativity. Csikszentmihalyi (1999) uses the “systems perspective” to explain thecreative process and its external variables. Csikszentmihalyi concludes that in order forcreativity 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 anddementia and was omitted.In the review chapter Fifty Years ofCreativity Research in Sternberg (1999), Richard Mayer analyzesthe various approaches to creativity research and comments on the gaps and challenges that still exist inthe pursuit of answers to questions such as: Can creativity be measured? Which cognitive processes areinvolved in the creative process? Do life experiences matter? What motivates creative people? What roledo biological and evolutionary factors play in creativity? How do social and cultural contexts affectcreativity? Can creativity be enhanced? He also sees a need for “new and useful methodologies” to studycreativity. He suggests that some of the discussions lean towards “speculation that is only loosely relatedto empirical data,, by sweeping generalizations that are not tightly supported by research evidence, and bya 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 anddementia. Providing empirical evidence to support the assumptions of scholars’ statements on creativitycan be a formidable task. The literature is short on empirical studies, and the ones provided do not offeran appropriate approach that can capture the essence of creativity in formation. Publications in generalcover views that are so widely spread that the focus on creativity and dementia is rarely addressed. It isclear that scholars in this field are grappling with understanding creativity and how to conduct appropriateresearch that would fit multiple situations. One clear message from Mayer’s review is that there is a needfor a multidisciplinary approach to creativity research.One approach some scholars (Gardner, 1982 Redfield Jamison, 1997) find attractive is to focus onpeople who are already known for their creative powers, since their creative abilities are obvious and easyto access for quantitative evaluation or qualitative observations. Perhaps understanding acknowledgedcreative 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 bereplicated elsewhere in a quest to understand creativity and dementia?Adopting the biographical approach that has been applied to known creative people to understandcreativity, it might be possible to study a creative person who has dementia. However, if we use thebiographical approach to research creativity, we indirectly adopt the notion that not all people are creativeand therefore everyday creativity may not be an accepted concept. But if we adopt the oppositeassumption that all human beings are creative, (Ward, Smith & Finke, 1999, p. 189) it could be possibleto study any human being.The question is then what kind of creativity are we looking for? Are we looking for exceptionalcreativity or everyday creativity— one or both? Perhaps we will need to reconsider, readjust and redefinewhat creativity is. The following section reviews the existing definitions ofcreativity put forward by thesescholars. I am aware of the scientific aspiration to meet rigorous academic standards, but I also respectyears of experience and wisdom accumulated in this complicated field of inquiry. Therefore, somedefinitions will be backed by empirical findings and some will be based on theory. Acknowledging thedifficulties and the lack of rich empirical evidence should not prevent continuing efforts to pursuecreativity research. Perhaps some untested thoughts may lead to a new direction for others to follow thatwill result in more rigorous tests in the field. There are many factors to be taken into consideration whenresearching creativity and perhaps utilizing one approach to creativity research at this time is notappropriate and trying to prove the existence of creative expression through empirical research is only onefactor in a much more complicated undertaking.35In his most recent review article on creativity, Runco (2004) faces the same complicated task asSternberg did in trying to sort out the various approaches to creativity research and advance theunderstanding of it. Runco claims that more than ever people need to use their creative abilities in a fastmoving technological society, which he describes as a “cultural evolution” (p. 658). He states that hisreview of the research is based on a framework suggested by Rhodes (1961,1987), which is divided intofour categories of creativity research:a. Person. “Research on personal characteristics” (Runco, p. 661), such as a person’s broadinterests, 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 artistswell-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 “divergentthinking and problem solving” (p. 661).d. Press. Was introduced for the first time by Harry Murray (1938) and continues to be used. Itrefers 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 acomprehensive approach to understanding creativity and added information from specific disciplines thatwere “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-arrangedsetting, to see how previous experience could contribute to creative behavior in problem solving. Epsteinexplains “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 abiological point of view leans towards “... behaviors and aptitudes” (p. 664). Studies that were based onpast medical surgeries to inhibit seizures referred more to the skills of the patients and not to their creativeabilities that are defined as “... originality and appropriateness, intuition and logic” (p. 664). Based onempirical evidence, Katz (1997) discovered that the creative process does not limit itself to onehemisphere 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 withbisected hemispheres and in a control group. They found that both parts of the brain are engaged whenverbal and emotional expression is concerned.Clinical research. Runco sums up creativity research in this category to be focused mainly on mentaldisorders such as schizophrenia and other disorders such as alcoholism, suicide and stress. Realizing thelimitations in past research Runco, Ebbersole and Miraz (1990) turned to a new direction, in which thedefinition 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. Theyadministered 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 andCrandall (1986). To their disappointment they could not establish cause and effect between creativity andself-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, alsomake the connection of creativity and self-actualization with “coping and adaptive skills” (p. 271). Thisconnection 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, self36expression and self-actualization. Runco also emphasizes the importance of research in this category forthe 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), andflexibility (variety) (Runco, 2004, p. 668). Runco sees these tests as predictors only that may indicate thepotential for creative thinking. Although the definition of creativity was expanded to include all of thesefactors, the solutions for problems provided in the various tests needed to demonstrate that they areappropriate solutions as well. And so appropriateness was added to the definition of creativity that looksfor novelty, innovation, flexibility and fluency.Developmental research. Most of the research in this category, according to Runco, is applied tochildren and adolescents, although research on creativity and adulthood is mentioned here with referenceto the latest work by Lindauer (1992). Runco did not look at the work of other scholars with expertise oncreativity 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 tocreativity research were described by Runco, they were too far removed from the topic on creativity anddementia. Although educational research is rich in studies on creativity, it mainly focuses on children andadolescents.Psychometric research. In this category, creativity is tested for its potentiality through “paper-andpencil” tests, which usually are administered to ordinary people as opposed to eminent persons. Thisapproach to creativity research is involved in comparative studies and their ratings. Psychometric testingis relevant to the topic of creativity and dementia, since people with dementia often go throughneuropsychological 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 forseniors 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 theindividual until scholars like Amabile (2000) shifted some of the attention to social influences on thecreative process. In these situations, depending on external factors, creativity could be discouraged in thecase of competition and criticism, or enhanced by working with other people. There is no mention ofcreativity, aging and dementia. However, understanding how creativity manifests itself within a socialcontext is very applicable to people in institutional care, such as seniors with dementia in long-term carefacilities.In his conclusions, some of Runco’s comments on the state of creativity research and its findings mayprovide support directly and indirectly to the importance of research on creativity and dementia. Runcoconcludes, “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 byconsidering various perspectives” (p. 677) and that researchers need to stay flexible in their approachwhen studying the subject. He recommends taking into account the person and their environment. Runcosees the importance of the interplay between clinical work and cognitive perspectives and between basicresearch and applied research. He makes us aware that creativity is expressed in many ways and in manydomains.He recognizes the need to study everyday creativity, which is the ability to cope with everydayproblems that does not call for what he calls “high-level achievement or expertise” (p.678). Runco applieshis concept of everyday creativity mainly to children. He is disappointed that the field of creativityresearch is still far from understanding the “mechanisms that underlie creative capacities” (p. 679). A37major concern of his is that creativity per se is not really researched, but novelty, insight, productivity andbehavior are; he considers these factors the products of the creative process. He agrees with otherresearchers that “originality is necessary but not sufficient for creativity” (p.679) and yet he misses theconnection Czikszentmihalyi (1999) makes that society has the final say as to what makes a thought or aproduct 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 inthe field of creativity research to rank the importance of research topics, ranging from the most importantto the least important. In a list of 36 items, mental health was 16, while neurobiology, mental illness andtherapy were at the bottom of the list. Testing and measurement got very low priority as well, whilecreative behavior topped the list. Which brings us back to the question posed in this paper: what doescreative behavior mean? What does creative expression mean? Based on this survey it seems that peoplein the field of creativity research do not see a strong need to explore the connection between health andcreativity. Although Runco did not elaborate on the reasons, it is possible that the pressure to produceempirical findings in the health services domain discourages research known for its difficulties andcomplexities. To reinforce this possibility testing and measurements also got a low priority. Perhaps theresults of this survey may indicate the gap between those who see creativity as a personal trait of eminentartistic talent and those who see creativity manifested in daily routine. It may indicate that any less thaneminent talent deserves less attention.These two publications, Runco’s Creativity Research Handbook and Sternberg’s Handbook ofCreativity, are considered to be milestones in creativity research; they bring together the work of manyscholars in an effort to identify major approaches to creativity research. Mumford used these twohandbooks as a starting point for his research on creativity. By studying their content, he concluded thatthere 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 todevelop integrative models” (p. 107). He also concluded that there is a need for more research on topicssuch as: “practical innovations, cross-field differences in the nature of creative thought, and the effect ofcreativity on people and social systems” (p. 107). Like other scholars, Mumford’s definition of creativityis 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 organizationalpsychology makes it clear why the link between creativity and a product is an important indicator ofcreativity 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, whichprecedes the actual performance, does not bring forth a product to evaluate. Therefore, “creativity maysometimes not involve any productivity whatsoever”... Productivity, then, is an objective indicator butonly sometimes indicative of creativity” (p. 138). Runco’s response opens the arena of creativity researchto new directions, which potentially may help support research on creativity and dementia.Other Perspectives on Creativity and ExpressionCreativity. According to the Random House Webster’s College Dictionary (1995), creativity is “theability 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 artor an invention.” This definition still leaves the reader with insufficient explanation, which leads to thenext question: Does creativity always need to result in an invention? Is any deviation from inventivenessconsidered 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 betweencreative 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 valueaccording to external criteria” (p. 94). If there is an agreement in most definitions that creativity involves38the creation of original and useful products, who decides what is original and useful? What evaluativesystems do we have for assessing originality and usefulness? According to Csikszentmihalyi, (1999) evenif an idea or an act resulted in a product, it would not be considered creative unless society accepted andrecognized it as such. As he states:Originality, freshness ofperceptions, divergent-thinking ability are all well and good intheir own right, as desirable personal traits. But without someform ofpublic recognitionthey do not constitute creativity. Infact, one might argue that such traits are not evennecessaryfor creative accomplishments. (p. 314)Csikszentmihalyi’s definition helps redefine creativity and opens it to new possibilities that may lendthemselves to research on creativity and dementia. According to Csikszentmihalyi, creativity only existswhen it evokes some form of public recognition. But public recognition can exist on different levelswithin specific contexts. For eminent artists, public expectation is high. For seniors with dementia, theentire context changes and so do public expectations. Two years ago, I mounted an art exhibition byseniors with dementia as an event exhibiting creativity. More than 4,000 visitors attended, many of whomleft comments showing their surprise at the level of creativity on display. They were expecting much lessfrom these seniors. In this instance the community showed their positive support of the exhibit based onthe 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 andmay stay just in the exploratory phase in the form of an idea or creative thinking. Feist’s definition ofcreativity (1999) still supports the notion of inventiveness but broadens the definition to include theability 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 orrepresenting in language. A picturing, representing, or symbolizing in art, music, etc. A showing offeelings, character, etc. (laughter as an expression ofjoy). A look, intonation, sign, etc. that conveysmeaning or feelings (a quizzical expression on the face)” (p. 495). This definition is sufficient to cover thevarious 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 moreinclusive, embracing expressions exhibited by people who may not be considered by society to possesscreative abilities, such as seniors with dementia. If creating is an act of expression, it may be original ornot, 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 newsituation may be considered equal to a creative act.In Art, Mind and Brain, a Cognitive Approach to Creativity (1982), Gardner admits that he knew verylittle about adults with brain damage when he first began to work with them. He describes how he came toappreciate the “person” within the individual. Working with these individuals he realized how much theyvaried 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 gainedrecognition in the 1 980s, about ten years before Tom Kitwood in England introduced the concept ofpersonhood. Personhood stands for an approach that relates to the person within the individual withdementia as opposed to the medical model, which treats the symptoms of the disease. It is possible thatthe two scholars did not know about each other’s work, since both were situated in different countries andcame 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 asnormal cognition. Gardner based his work on neuropsychological studies that focused on languagedisorders such as aphasia. He studied gifted artists who had suffered brain damage and “normal39nonartistic individuals” (p. 267). Both groups were observed working in three art forms: painting, musicand literature. It should be noted that Gardner did not question what is considered creative. He did notelaborate on how he decided who was considered a highly artistic person, and who was not. AlthoughGardner seemed to divide individuals into artists and non-artists, he still believed that “nearly all of ushave 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 refrainedfrom discussing the quality of the expression.The Meaning of Creativity, Gaps in InformationThe overarching definition of creativity, as these various researchers present it, seems to concur thatideas and products are creative as long as they are new and useful. In addition, they cite the ability toadapt, maintain flexibility and fluency and be valued by society. None of the researchers discussed theissue of creativity and dementia. Sternberg’s handbook ignores the subject of creativity and agingaltogether. Runco’s article on creativity does bring up briefly the issue of aging and creativity but notcreativity and dementia. Gardner discusses how creativity manifests itself in people who have suffered astroke, bisection of the brain, and other damage. While Gardner makes it clear that not all individuals withbrain damage are mentally ill, other researchers (Eisenman, 1997) actively associate creativity withmental illness or other exceptional personal traits. All researchers in these publications agree thatcreativity is a complicated subject and there is a need for more research. Many researchers agree that oneapproach to the study is not sufficient and that research should consider studying creativity from severalapproaches, 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 relevantin their entirety to the study of creativity and dementia and none reflect the situation in which seniors withdementia operate. Some parts of the definitions may apply, such as the need to be able to adapt to newsituations, flexibility, fluency, everyday creativity and society’s acknowledgment of the creative idea oract. What is missing is literature on aging that may provide information on how creativity manifests itselfin later life with a possible focus on dementia.Opening up the definitions from eminent creativity to everyday creativity allowed researches likeRunco and Richards (1997) and Runco, Ebersole and Mraz (1990) to further develop this concept and itscontribution to the quality of life at every stage in human development. They say that creativity manifestsitself in being curious, in an ongoing process of self-evaluation and personal growth. Quality of life inadulthood 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 whicheach adult has unique or different health needs” (p.35). Their understanding of the quality of life of olderpeople supports Runco, Ebersole and Mraz (1990) in defining the concept of everyday creativity, whichvalues the social, emotional and spiritual aspects that contribute to the notion of what makes a personwhole. In his (2003) response to Mumford (2003), Runco elaborates further on how he sees everydaycreativity manifest itself:Everyday creativity may be involved in the problem solving that occurs when anindividual 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 entertainguests or children, and in countless otherfairly mundane ways. Without recognition ofeveryday 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 thecourse ofone ‘s activity at work or leisure ... In every case, the activity involves40innovative elements which are also meaningful to others — two common criteriaforcreativity” (p. 97). [Creativity] “emerges unpredictablyfrom the richness ofourdiversity— both within our own minds, and between all ofus in this multipotentialledworld. We should cherish this diversity, preserve, and enhance it, for it may help us inways we cannot imagine now.” (p. 449)Based on these definitions and explanations of creativity, we can now investigate further howcreativity manifests itself in later life and examine the qualities valued the most at this stage. Tounderstand creativity in later life, I will describe three studies. The first, a qualitative study done by Fisherand Specht (1999), concerns seniors in normal aging. The second is a quantitative study by Smith andVan Der Meer (1997) that is included to provide contrast with the two qualitative studies. The finalqualitative study by Davis Basting shows how creativity manifests itself in seniors with dementia.Creativity and AgingIn Successful Aging and Creativity in Later Life (1999), Fisher and Specht conducted a qualitativestudy over a period of two months, was to examine the link between successful aging and its relationshipto creative activity as older people see it. The study included thirty-six seniors, men and women, ages 60to 93. These seniors participated in an art exhibit and were interviewed for their understanding ofsuccessful aging and creativity. Two independent interviewers asked closed and open-ended questionsfrom a survey questionnaire. The interviews lasted from 45 to 60 minutes. Using content analysis, sixtopics emerged as important for successful aging: “a sense of purpose, interaction with others, personalgrowth, self-acceptance, autonomy and health” (abstract, p. 1). Reports of the participants’ opinion onbeing involved in creative activities showed that it contributed to “a sense of competence, purpose andgrowth” (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 thatparticipants identified adaptability, flexibility and coping as important elements to successful aging; theseare the same elements that other researchers in creativity describe as essential factors in the creativeprocess. Fisher and Specht also found that their participants valued their artwork, the opportunity to usetheir skills, express their thoughts and use their imagination. Most participants expressed joy andsatisfaction in being involved in a creative process. They also referred to these activities as an opportunityto forget their health problems and to become absorbed in their work. The activities encouraged a positiveoutlook on life and provided an opportunity to engage in social interaction. Fisher and Specht found itintriguing that the participants put more emphasis on the creative process than on the product itself, andon using the same “dynamics, motivation, attitude and imagination” in other areas of their lives. Itappears 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 Lubartand Sternberg (1998, pp. 25-26): “Creative performance involves the intellectual processes of definingand redefining problems, choosing appropriate problem-solving strategies, and using insight processes tosolve problems”.With this study the definition of creativity and aging can be expanded to include the ability to definethe problem, choose appropriate strategies and use insight to meet challenges in life. As one of theirparticipants put it: “I’m not done with life. In some ways, I think I’m just beginning to see what it’s allabout” (p. 13). Fisher and Specht concluded that life itself is a creative expression. Their findingsrepresent the core of how many old people approach their lives. Anecdotal reports and personalexperience 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 studyon creativity in old age. Although not put forward in a clear way, the underlying assumption is that not allpeople are creative. The aim was to explore how old people handle health crises, aging and death. Smithand Van Der Meer concluded that creative people face aging, death and illness in a less negative way thannon-creative people.41The group under study included subjects between 67 and 86 years old. The control group had peoplebetween 70 and 72 years old. The control group was tested over a period of one year while the groupunder study was tested all in one day. Three instruments were used, all following a pre-planned, timesensitive method. The instruments included the Meta-Contrast Technique (MCT) that measures anxietyand defence against anxiety by using various themes of visual images, the Identification Test (IT) thatexamines 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 thedifficulties researchers face in carrying out projects that involve an older population. Several flaws wereevident in their research design: a. The two groups were not comparable in age. The age span from 67 to86 is too large. b. The testing period was not comparable. The group under study was tested in one daywhile the control group was tested over one year. c. The time-sensitive testing approach is not appropriatefor this age group. The literature is rich in findings (see below) on physiological and cognitive slowingdown with aging. Does that mean the older person who needs more time to process information is lesscreative? d. The interview questions concentrated on highly stressful issues such as fear of illness anddeath that may have primed the responses of the participants and may have played a factor in theirresponses. Older people, encountering stressful topics where they were required to respond within predetermined time limits, may find they have no opportunity to reflect, to come up with spontaneousanswers, or time to think creatively.The approach to neuropsychological investigation described by Una Holden (1995) is much moreapplicable 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 thesubjects the opportunity to succeed as much as possible; keeping the interview short and presentingquestions 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 theinterview (p. 35). For her part, Amabile (1990) reports that external evaluative processes of one’s creativeabilities are harmful to the creative process itself. Of the two studies, Fisher and Specht’s appear to havetaken the more appropriate approach to examining how older people perceive creativity and how they useit to face life experiences.To continue the evolution of definitions of creativity, I have moved from creativity of eminentindividuals to everyday creativity as a trait of ordinary people, to creativity as an expression of life, with afocus on creativity in old age. The next step is to examine creativity in old people with dementia. Thereare very few empirical studies on this topic and the ones found are limited mainly to single abilities suchas singing, dancing or painting. The topic needs study from an interdisciplinary perspective delving intothe richness and complexity of what it means to be old and creative while being physically andcognitively impaired.The next qualitative study is unique since its author’s philosophical approach to creativity anddementia fits within the topic of this study and is one of the few studies available on this topic in theliterature. 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 thepreservation “of selfhood in the midst of its perceived loss” (p. 89). She supports her work with TomKitwood’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 socialidentity (how others perceive us) intact and comments on the amazing self-awareness they have of thedeterioration of their personal identity (our sense of who we are). Davis Basting’s authors are aware oftheir problems, they are coping with the disease as well as they can and finding ways to expressthemselves creatively through writing. All authors would like to leave a legacy behind that may be usefulone day for others; this shows the ability to plan for the future. Davis Basting’s authors demonstratequalities that are included in definitions of creativity: the ability to identify a problem and apply a solutionto it, the ability to have the motivation to produce a useful product, the ability to have a vision and planfor the future with the help and recognition of the community, family and friends and ofDavis Basting42herself, who as a leader in the field sees their writings as very valuable. TimeSlips, a program shedeveloped, is an innovative method of group story-telling by seniors with dementia. In the trainingmaterials for the program, she writes:Creativity is: adding something new to the world, how we know ourselves, how we growourselves, how we connect to others ... through creative expression, we share ourselves andconnect to others. Creative expression is importantfor everyone, but it is even more importantforthose 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 byother scholars in the field of creativity research. However, for a definition that embraces dementia moreclosely, I suggest adding a few more key elements to her definition: Creativity in the context of dementiaadds 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 demonstratedthrough 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 ImportantBased on this literature review ,inquiry in the field of creativity and dementia provides some evidencethat support what anecdotal observations have claimed for a long time — that when given meaningfulopportunities and encouragement, seniors can express themselves creatively until they reach the advancedstages of the disease, in spite of their physical and cognitive limitations. Providing an outlet for creativeexpression gives seniors with dementia an opportunity to be heard and to be valued. Creative expressionis 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 throughcreative expression activities we can communicate with seniors with dementia. We listen, respond andinteract with them through these activities. In this way we can learn about the seniors’ past life, whichmay 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 theAging ProcessOpportunities for engaging in creative expression are numerous and they vary from visual andperforming arts such as painting, listening and making music, dancing, singing and reminiscing toactivities in daily life such as cooking, dressing, planning and gardening. The main question that arises iswhich opportunities are appropriate when we interact with seniors with dementia and what are theenvironmental circumstances that affect them.The explore the main question concerning changes associated with aging and dementia I turned to atheoretical 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 currentlyunforeseen implications of unselfconscious assumptions about age. It may also provide conceptual toolsto 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 severaldomains. 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 statesthat “to understand human life, we need to study thinking, wanting, feeling, and doing conjointly ... Infact, it may be exactly this combination of an elementaristic and holistic approach that makes room fornew insights into psychological functioning” (p. 352). Biological, psychological and social aspects of43aging “do not occur independently of each other ... changes in the physical state of the body (and thebrain 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 atthe University College in Worcester in the UK.Staudinger and Davis Basting focus on changes that take place in each domain that affects creativeexpression abilities and opportunities for engaging in creative expression in the older population fromnormal aging through to aging persons with dementia. This population of older people, from the age of 65to 100 years and over, is diverse in age, health and abilities. Growing older and experiencingphysiological decline does not necessarily result in diseases and/or in cognitive and physical impairmentthat stem from a medical condition. It is more appropriate to talk in terms of mild decline in normal agingrather 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) andLindenberger and Baltes (1994) indicate that some deterioration in memory functioning such asinattention, 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 agingand dementia with a specific focus on its relevance to creative expression activities. Case studies from theliterature will be drawn for support wherever possible. However, due to the lack of appropriate empiricalstudies that make specific connection between practical manifestations of creative expression, dementiaand the biopsychosocial model, I will turn to the closest qualitative studies of researchers like Policastroand Gardner (1999). Both Policastro and Gardner came to the conclusion that psychometric standardizedtesting failed to fit everybody’s abilities, especially those of exceptional creative individuals. Policastroand Gardner also struggle with the difficulty of how to approach creativity studies. Although thisexplanation could belong at the beginning of this paper, it has its special place in this section. Because ofits relevance to this question, I will rely mainly on their work. Policatsto and Gardner developed a newcumulative approach to creativity study, which was based on a progression of steps ranging fromphenomenology, the study of known creative individuals, to a search for emerging patterns in comparisonwith other similar individuals. They accumulated a large database that allowed more patterns to emergeand 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 everydaycreativity to adapt to the changes in their lives. A good example of creative adaptation is the well-knownchoreographer, Twyla Tharp, (2003) age 62, who appropriately named her autobiography, The CreativeHabit: 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 ofexamples of people he met during his 30 years’ working with elderly patients as well as a rich selection ofstories about well-known seniors from Mother Teresa, who received a Nobel Peace Prize at age 87, toJacques Cousteau, the French oceanographer, who popularized the study of the ocean environment andworked until his death at age 87. Stories about such exceptional individuals are the data usually collectedin 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’squalitative descriptions, can help delineate many of the questions that propelled this research topic oncreativity and dementia. Ignoring this practical experience will only mask a world that exists in dementiacare and may stifle reality for thousands of persons who could benefit from being acknowledged whiletheir cases only later contribute towards more rigorous scientific research. The anecdotal examples help toidentify a problem, and build towards a theory that needs to be tested. However, I realize they may simplypresent fascinating snapshots, moments in time rather than the whole picture. Their use is not intended toprovide empirical evidence except as individual cases, which limits their generalization.44Although most of us experience aging, it is still shrouded in scientific mystery. Most people refer toaging from a biological perspective. Dr. Gene Cohen, Professor of Health Care Sciences and ofPsychiatry at the George Washington University, explains the process of aging as “a simple case of wearand tear ... an internal erosion that weakens cells, organs, and organ systems from head to toe, limitingtheir functioning” (p. 43). Stuart-Hamilton (2000) lists several theories of aging from “programmedtheory of ageing (i.e. that cell death is in effect planned)” to an “autoimmune theory of ageing ... thatageing 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 processthat 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 byretirement and the so-called typical behavior that a specific society expects of its aging people (Baltes andReese, 1984).“Dementia refers to the development of multiple cognitive or intellectual deficits that involvememory impairment of new or previously learned information and one or more of the followingdisturbances: 1. Aphasia, or language disturbances. 2. Apraxia, or impairment in carrying out skilledmotor activities despite intact motor function. 3. Agnosia, or deficits in recognizing familiar persons orobjects 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 ofMental 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. Dueto 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 vasculardementia accounts for more than 20%. Causes for Alzheimer’s disease are still being investigated. Recentresearch points towards two contributing factors to the disease: “extra neuronal deposition of I—amyloidand intraneuronal destabilizing of tau protein” causing plaque formation, which destroys neurons in thebrain and induces inflammation that causes further damage to the cells. Damage to the areas of theentorhinal cortex and the hippocampus causes impairments to short-term memory in early symptoms ofthe disease. (Agronin, 2004, p. 72). Agronin, Director of Mental Health Services, at Miami Jewish Homeand Hospital for the Aged, reports that some people may have more than one type of dementia. It isimportant to diagnose the type of dementia, since it may be of a reversible type. Risks factors areassociated with “advancing age, menopause, brain injury, lower education, and the presence of theapolipoprotein E4 (APOE4) genetic allele” (p. 72).Physiological Changes Associated with Aging and DementiaPhysiological age-related changes relevant to creative expression abilities take place in the nervous,sensory, cardiovascular, respiratory, skeletal, and muscular systems. All systems are interconnected andwhen 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 andintegrating information and in internal communication (Deck & Asmundson, 1998). The nervous systemis divided into the central (CNS) and peripheral (PNS) nervous systems. “The CNS consists of the brainand 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 nervoussystem may contribute to the following changes: a) “Tremors, slowed reaction time, short-term memorydeficits, personality changes and depression” (Dudek, 1993, P. 326). “Reaction times become slower andthe velocity of nerve conduction slows by 10 to 15% by age 70” (Spirduso, 1975, p. 435), b) Slowing inspeed of information transmission, c) Reduced functioning of autonomic nervous system, d) Sleep-related45changes, 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 adecreased 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 informationin 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 worldoutside. It will take longer to process information and longer to react to it. Missed information may causeconfusion and decreased self-esteem; it may contribute toself-imposed isolation, loneliness, moodswings, anxiety, anger and aggravation (Una Holden, 1995). It is important to note that creativeexpression abilities may continue to function internally in spite of physical limitations. However, thoseabilities need the opportunity to be expressed, recognized, validated and appreciated. If the opportunitiesare not provided, those physical limitations may become mental problems, which in turn may result infurther physical deterioration. This cycle needs to be broken in order to provide opportunities for healingof the mind and spirit and for creativity to continue to survive (Tiki, 2000).Davis Basting’s definition ofcreativity underscores how important creative expression can be for seniors with dementia if they are tocontinue to maintain cognitive and social contact with others.Age-related visual impairment can be most noticeable when dedicated artists experience changes inthe style of their artwork late in their career. The normal aging population, who may not be engaged in thevisual arts, may never notice some changes in their visual abilities. Following the rationale of Policastroand Gardner (1999) and their cumulative approach to research in creativity, we may learn about theexceptional abilities of well known artists and through comparative studies reach an understanding ofwhat is normative and what is not and apply it to people with everyday creativity. There is a longstanding debate in the art world as to what constitutes a change in artistic style— is it due to an artisticdecision, 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 withAlzheimer’s, he continued to produce a large body of work that was exhibited and analyzed with some ofthese questions in mind. Perhaps, such artists were aware of their limitations and found satisfactory waysof adapting to them. We have some clarification that artists suffer from visual impairment in Marmor andRavin’s book, The Eye ofthe Artist (1997). In it, Monet is quoted as commenting on his painting of waterlilies:IfI regained my sense ofcolor in the large canvases I’ve just shown you, it is because Ihave adapted my working methods to my eyesight and because most ofthe time I havelaid the color down haphazardly, on the one hand trusting solely to the labels on mytubes ofpaint and, on the other hand, to force ofhabit, to the way in which I have alwayslaid out my materials on my palette. (p. 248)Monet suffered from cataracts, where the “lens becomes so sufficiently opaque that vision iscompromised” (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 & Ravinstate, “What cannot be seen cannot be matched and therefore cannot be made” (p. 30). Other well-knownartists may have suffered from visual impairment, including El Greco from astigmatism, when “imagesare focused more strongly in one direction than another” (p. 16), Edgar Degas from blindness, andGeorgia O’Keeffe from blurred vision. O’Keefe suffered from macular “degeneration of the central part ofthe retina” which can cause “images (to become) hazy, fragmented and distorted” (p. 216). Regardless ofthe 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.4616-17). 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 lightabsorbed 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 colordiscrimination” (Coren, Ward & Enns, 1999).Understanding aged-related visual impairment has significant implications for how art topics, artsupplies, educational materials and studio arrangements should be considered when presented to olderpeople. More specifically, visual information may need to be less detailed, high in contrast, appropriatelytask lighted, located at eye level, whether for a sitting or standing person, and presented at an appropriatedistance from the eye. Other solutions may be as simple as providing a pair of glasses, or medicalintervention.Adults over the age of 80 run the risk of developing dementia-related impairments in addition to thenormal age-relatcd decrease in abilities. A person with dementia may have the mechanism of seeing intactbut suffer impairment to the perception system, which reduces the person’s ability to recognize the objectsthey see. To make matters worse, if parts of the diseased brain affect memory, they also affect their abilityto recognize objects from memory. This explains why some seniors with dementia cannot identify objectsin front of them and have difficulty drawing them, or — more amazingly, they are able to draw the objectsbut fail to recognize what they have just drawn. This phenomena is described in Margaret Livingstone’sbook, Vision and Art (2002). Livingstone is a Professor of Neurobiology at Harvard Medical School. Shequotes a stroke patient saying to his doctor: “I can see the eyes, nose, and mouth quite clearly, but theyjust don’t add up...“ (p. 64).Stroke patients may exhibit similar symptoms to dementia, but unlike people with dementia, theircondition may improve as time passes. Strokes also account for vascular dementia, the second mostcommon form of dementia (Agronin, 2004). In addition to object and color identification, people withdementia may experience difficulties in depth perception. Our eyes allow us to see in two dimensions butthe 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 braindiminishes 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 werelooking at. For instance, one senior painted a tree all in one color, green, although a large variety of colorswere available. Was it a deliberate decision not to bother changing the pens to reproduce the correct colorof 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 thedrawing paper by stating that the apples were still green and so was the foliage that covered everythingalmost to the ground. This verbal explanation, which went along with the visual image, made the wholesession very special and meaningful to the artist/senior with dementia and to the other participants whowere 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 infront 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 inthe 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 artisticexpression was affected by the dementia, her language abilities stayed almost intact. In searching for anexplanation, Gardner (1982) is the only one I found who makes the connection between artistic abilities47and language and how they are manifested. Gardner reports the claims of other researchers who hadsimilar experiences, although there is little evidence of more research in this direction. In his chapter onthe 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 ofthecanvas, they may distort the externalforms ofobjects, or they may portray emotionallybizarre or even repulsive subject matter. Apparently painting and linguistic capabilitiescan exist independently ofone another. (p. 274)Although the changes to the artwork may result in bizarre images, the main idea, suggested in the newdefinition of creativity and dementia I propose, is to continue to encourage creative expression as long aspossible. 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 theage 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 increasetheir feeling of isolation, and can even “result in psychiatric disturbances ... delusional thinking” (Teagueet al., 1997). This observation is also supported by Weinstein (2003): “Untreated, hearing loss hassignificant social, cognitive, and emotional consequences” (p. 15). In hearing less the elderly are lessexposed to external stimuli that could activate their memory and prompt the internal creative process. Forexample, Aldridge (1993), a professor of clinical research in the Faculty of Medicine at the University ofWitten Herdecke in Germany, found that music therapy programs for seniors with dementia activatestheir memories.Hearing loss should not affect creative abilities that are not sound-based. “Fortunately, a variety ofinterventions and technologies are available to help older people overcome these communicative andpsychological effects” (p. 15). In addition to hearing loss, the elderly run the risk of increased imbalancedue to age-related changes to the inner ear. This change may contribute to “dizziness, instability, andfalls” (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 creativeexpression abilities, we refer most often to music, speech, and the sounds we hear from the world aroundus, whether it is a barking dog or traffic noise. The question arises: What may the impact be for a personwith dementia whose hearing impairment is not detected, or for whom hearing aids are not used all thetime? The impact of hearing loss on creative expression abilities or the opportunities to be engaged inthem depends very much on the person with dementia. Some people are affected less than others and thesounds of music may be more important to one person and not so important to another. The literature isrich in studies of people with dementia and their positive response to music, whether activelyparticipating 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 inlater life (2003, p. 36) found that “hearing-impaired older adults are approximately twice as likely as theirnonimpaired 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 orconcentrating, and thoughts of death. Hearing impairment may limit the selection of possible expressionactivities but adjustments can be made so that hearing impaired seniors with dementia can enjoy relatedcreative activities. In addition to behavioural modification, listening to familiar music is another form of48auditory 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 elderlysubjects 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 memorycompared 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 recognizingcommon foods in pureed form. Also, while seniors show a reduced sensitivity to touch, their sensitivity topain remains (Coren et al., 1999). Although taste, smell and touch impairments are not considered asprofound as impairments to seeing and hearing, they yet rob the older adults from experiencing fuily theworld around them in comparison with a younger population. It is important to note that older people areat risk when taste, smell and touch are impaired, since they may be exposed to toxic substances, overlookimportant 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 externalstimuli that might otherwise provide access to recall memories. As a consequence, a facilitator forcreative expression activities needs to take into consideration that older adults, especially seniors withdementia, may need enhanced flavors, especially in salt and sugar (Coren, Ward & Enns, 1999), whileengaged in creative cooking and baking. A facilitator needs to be aware of food products that may notevoke any reaction since they may appear tasteless to the senior. Exposing seniors to smells may remainunnoticed, unless the facilitator focuses on fruity smells. In a study by Larsson (2000) it was found thatwomen 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 findingsare important in understanding gender differences, personality traits and the need to accommodatecreative expression activities that are meaningful by tapping into the strongest abilities still left to workwith. In selecting objects to be touched by seniors, the facilitator may need to be aware that feather-liketouches may not be noticeable and that extreme temperature and sharpness would need to be monitoredfor safety reasons.The cardiovascular system is based on the heart and blood vessels. Cardiovascular disease is commonin old age and it increases as age progresses. At age 70, about 10% of the population have cardiovasculardiseases and at age 85, the percentage rises to around 50% (Fahiander, Wahlin, Fastbom, Grut, Forselland 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 signsof 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. Episodicmemory is defined as “specific episodes in one’s life” (Reisberg, 2001, p. A4). We need to take intoaccount the risk factors in increased physical activity and tailor the activities to the elderly, especially forcardiac patients (Schulman & Gerstenblith, 1989). The intensity level of physical activity needs to betaken into consideration, in consultation with the seniors’ healthcare providers. Although these activitiesshould be taken with care, “regular physical activity and exercise can also assist older adults in enhancingtheir quality of life, improving their capacity for work and recreation, and altering their rate of decline infunctional status” (Frontera & Evans, 1986). However, dementia does produce a decline over time in theseniors’ functional status and with it the opportunities to engage in various movement activities, such asdancing. If a senior with dementia also suffers from congestive heart failure, that condition may restrictthe level of activity recommended for that person.Due to the direct relationship between cardiovascular deficiency and cognitive performance, high-riskindividuals may need to be identified prior to an activity to make sure the activity is appropriate for their49energy level and cognitive ability. Creative expression activities may include physical work such asdancing, clapping, using drums, acting, painting large images that may require standing, gardening andplanting and so on.The respiratory system “provides oxygen to all cells in the body as well as serving to excrete carbondioxide, a waste product of metabolism” (Deck, 1998, p. 63). Any disturbances to the oxygen supply maycause heart problems and pneumonia, which in turn reduce the level of activity of the elderly. Care shouldbe given at any age and at any place to protect against environmental toxins. Elderly people run the risk ofemphysema and pneumonia. They are also very vulnerable to air pollutants (Spence, 1989). Respiratoryproblems may restrict the senior from taking part in some of the creative expression activities. Artproducts should be screened for their toxicity and for their use; they may pose problems if taken into themouth. Creative abilities are not necessarily affected unless the senior is too frail to take part in anyactivity.The skeletal system supports “all the soft tissues of the body, it protects internal organs, it stores vitalminerals, and it plays an integral role in the formation of blood cells.” (Deck, 1998, p. 73). Changes tothis system have a “profound effect on the life style of the elderly” (p. 73). Osteoporosis is a “skeletaldisease characterized by low bone mass and microarchitectural deterioration of bone tissue, withconsequent increase in bone fragility and susceptibility to fracture”, which are common in the “hip, spineand wrist” (Kendler, 1996, p. 262). Symptoms of impairment to the skeletal system and osteoporosiscontribute to stiffjoints, pain, restricted movements, frailty and deformity. Other impairments are due tothe deterioration of cartilage, changes to the spine, and rheumatoid arthritis. Although impairments to theskeletal system are not connected to cognitive abilities or creative abilities, they have the potential torestrict mobility and cause significant pain that would prevent a person from fully enjoying creativeexpression activities.A combination of carefully planned programs and appropriate therapeutic environments willcontribute to a safer environment. Some thought is needed to address the kind of art supplies, location ofthe art supplies in relation to the artist, drawing position, whether sitting or standing. Many frail elderlypeople 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 manyoccasions, I adjusted easels, improvised work surfaces, suggested painting with fingers instead of holdinga 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 abilityand lifestyle of the elderly individual” (Deck, 1998, p. 79; Spence, 1989; Heath, 1993). Physical activityis necessary for successful aging and can bring “physiological and psychological benefits” (p. 79). Agingcontributes to loss of muscle mass; 20% of muscle strength is lost by the age of 65; this loss can also beattributed to “disuse” or inactivity and which contributes to significant limitations in flexibility (Heath,1993). Deck (1998) comments that “boredom, inactivity, and expectations of illness contributesubstantially to the decline of physical capacity in elderly individuals” (p. 79). Impairments to themuscular system may increase the resistance of seniors to participate in creative expression activity withmore physical involvement. Working with seniors with dementia, the author noticed how pain associatedwith muscular and skeletal impairments discourages older people from wanting to move. Combined withsymptoms of dementia, physical movement would keep these seniors from participating in creativeexpression activities.Cognitive Changes Associated with Aging and DementiaTo understand “how the brain works, what is involved in various mental processes, and how the brainmakes these achievements and processes possible” (Reisberg, 2001, p. 2), we need to combine knowledgefrom cognitive psychology and cognitive neuroscience. However, our focus here is on intellectualfunctioning and how it manifests itself in cognitive functioning or, more specifically, in creativeexpression abilities. Neuroscience will be mentioned briefly only to clarify how it relates to dementia and50the parts of the brain responsible for impaired behaviour in an attempt to identifS’ why certain behaviourand abilities are the way they are.Cognitive neuroscience is associated with the medical model of care based on illness. It is criticizedby 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 strongrelationship 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). Sincecreative expression touches on both systems of cognitive functions and perception, we will concentrate onan in-depth review chapter by Schneider and Pichora-Fuller (2000). In the literature on cognition andperception in aging, this study is remarkable for its depth, breadth and comprehensiveness. It supports ourneed to tie together several fields in understanding how elderly people react to external stimuli, and thenexpress themselves creatively. In explaining the processes that contribute to learning, knowing andexpressing, Schneider and Pichora—Fuller (2000) write:The coexistence of these two kinds ofage-related changes raises important questionsabout the relationship between early and later stages in information processing, that is,between perceptual and cognitive processes, which have now been shown to have “apowerful inter-systemic connection” (Baltes & Lindenberger, 1997, p. 16). In thischapter, we argue that perception and cognition must be considered as parts ofanintegrated 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 strongcorrelation 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 multipleconsequences for perceptual function” (p. 173) The main concept of their theory as it applies to the linkbetween cognition and perception is explained very clearly in the following:“... age leads to sensory organ deterioration that affects the kind and quality ofinformation delivered by the perceptual system to the cognitive system. Ultimately, areduction in both the quality and quantity ofinput would result in cognitive deteriorationdue to atrophy.“(p. 203)In their conclusion, Schneider and Pichora-Fuller recognize the importance of testing the perceptualstatus when doing cognitive research with the elderly. By doing so, the researcher can define theperceptual loss and its effects on cognitive abilities. Schneider and Pichora-Fuller and other researchersfound evidence of degeneration in normal aging. It affected auditory functions: in detecting signals innoise; 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 brainfunctions, with cognitive and perceptual impairments that determine the level of creative expressionabilities.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 issuesthat pertain to dementia disorders and dementia care. He successfully combines various approaches todementia care, including the Kitwood approach, which emphasizes the person inside the medicalcondition. He responds to the mounting criticism from gerontologists and social workers regarding theway seniors with dementia were treated and still are to a large degree. Recent neurological research51findings from Ropper and Adams (2001) and Nutt & Weizman (2001) are described in Agronin’spublication:1. Damage to the Frontal Lobe can result in: impaired executive functioning, impaired immediatememory, slowed cognitive processing, slowed activity, poor concentration and attention, impairments injudgment, insight and behavioral control, personality changes, apathy, preservation of words, sounds orbehaviors, disinhibited reflexes, impulsivity, aphasia, language disturbances, and impaired task-follow-through (Agronin, 2004). Impaired attention translates into decreased alertness, being distracted, notbeing able to separate relevant from irrelevant information, not being able to handle multiple sources ofinformation at the same time (Mcdowd & Shaw, 2000). Anatomical changes in the frontal lobe due todementia can impair the processing of information and the ability to react to it. Interestingly, the samedamage 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 SanFrancisco School of Medicine, discovered with his colleagues, Cummings, Mishkin, Boone, Prince andPonton (1998) and Ponton, Benson, Cummings and Mean (1996), that patients with frontotemporaldementia (FTD) “developed new artistic skills” and “became accomplished painters after the appearanceof frontotemporal dementia. Three patients in a study group improved their skills during the onset of thedisease and through the middle stages of it. One patient in particular, with no interest in the visual arts inthe past, continued to paint for about 10 years from the time of the diagnosis with increased “precisionand detail”. He used bright colours and painted his first paintings fast, slowing later and paying moreattention to detail. As his disease progressed he started to draw “bizarre doll-like figures.” These figuresbecame an important key in examining artwork done by seniors with dementia. Gardner (1982) alsobrings 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 andobjects, 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 incominginformation 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 withdementia 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 partof the brain will reduce the ability to respond to stimulus through touch, poem writing, story reading andwriting, 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 moreprofoundly affect the ability for expression in visual arts.5. Damage to the Temporal Lobe may cause: impaired memory and hearing, changes to emotionaland behavioral expression, apathy, and oral exploratory behaviors.SummaryResearchers like Gardner, Miller, and Schneider and Pichora-Fuller provide the groundwork forneurological understanding that translates into practical information about what to expect wheninteracting with seniors with dementia who engage in creative expression activities. Dr. Miller’s patientswere diagnosed using magnetic resonance imaging (MR1) to veri1y the degree of atrophy in the brain andthe location of the damage. It would be beneficial if all dementia patients had this procedure, however, itis costly and most dementia patients do not undergo such procedures. In the absence of this diagnostictool, artwork could become an inexpensive substitute with the potential of explaining some behaviours.52Social Cognition, Aging and DementiaSocial 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 embracesnotions about dependency and autonomy, body and soul, and paradoxes emanatingfromirreconcilable tensions between images ofthe old, their own will and desires, and thefacilities offered to them. (p. 1)Hazan sees people in old age trapped socially by the language of separation, by a culture thatseparates 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 andhumans 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 ofsociety” (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 desperateto avoid it” (p. 5). For him, words such as “aged, old, older person, senior citizens, elders, old agepensioners — 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 dictateswhen 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 peopleeconomically, “their relationship to others, their self image” (p. 16). Overnight, retired people lose theirstatus 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 againstpeople because they are old, just as racism and sexism accomplish this with skin colorand gender. Oldpeople are categorized as senile, rigid in thought and manner, old-fashioned in morality and skills.... Ageism allows the younger generation to see olderpeople as differentfrom themselves; thus they subtly cease to identfj’ with their elders ashuman beings. (p. 576)Creative expression abilities are based most strongly on “the interface between personality andintelligence” (Staudinger et al., 1997). Those creative traits may or may not be expressed through socialinteraction and a quest for self-identity. Older people may refrain from expressing themselves if thesociety they live in refuses to support them emotionally. According to Hazan (1994) older people sufferparticularly from stereotypes that are socially constructed when they are treated as a homogeneous groupwithout regard to individual differences. Staudinger (1999) stresses the importance of the individual andtheir life experiences. These individuals have a past and make plans for the future. In her research, whichis supported by Lindenberger and Baltes (1994), Staudinger found that when older adults are engaged inlife review and life planning, they “do not show the usual declines identified in cognitive functioning ofthe 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 brandordinary old people as “incapable of creativity, of making progress, of starting afresh” (p. 28). Hecontinues “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 peoplebecome stereotyped as incompetent and dependent (p. 146). In 1986 Ryan introduced the CommunicationPredicament of Aging, which demonstrated how caregivers change their verbal and non-verbal53communication with an elderly person. This model presents several stages from the first encounter withan older person to changes in speech and behaviour of a patronizing nature, which reinforces stereotypingand causes the older person to avoid interaction. To support this cycle, Smith & Van Der Meer, in Runcoand 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 beingdetrimental to creative functioning” (p. 352). McMullin and Marshall (2001) suggest that agediscrimination 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 normalaging become more accentuated with older people, who are sick with dementia. Aronson (1999) makes itvery clear that older people, who become sick and move from being independent and in relatively goodhealth to total dependency, are at the mercy of others for care.Older people with attributes that signal their potential dependency —for example, beingill or disabled, poor, orfemale — are especially exposed to these oppressive practices andare, coincidentally, those most likely to enter the orbit oflong-term care, thus, ofsocialworkers. ... These organizations and the cumulative practices ofservice providers withinthem play critical parts in both distributing resources and in shaping images andvocabularies 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 apostmodern 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 tosuggest 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 maybring positive changes in behaviour and self-image when the medical model of treating seniors withdementia is enhanced with the person-centred model as identified in the field of gerontology. Althoughthe reduced abilities are a fact, responsive environments may help alleviate feelings of isolation andbreakdown in communication.54L From a Biomedical Model to a Person-Centred Model Withinthe Context of Creative Expression Activities• Understand patterns of behaviourand the causes for problematic abehaviour to reduces anger andagitation. Provide opportunitiesfor decision-makmg as long aspossible, however small: artprojects, meal preparation,moving objects, collecting things.Therapeutic Environment• Positive change in behaviour• Promotes independencepreservation of the self anddignity• Improves socialization andcommunication.Figure 3: The Conceptual Framework of the Person-Centered Model versus Medical Model‘JrIs it an opportunityopportunityperson-centred modelsupporting and adjustingto gradual deficits• Release of inhibition may encouragecreative abilities• Long-term memory may stay intact.Opportunity for: Life review,reminiscing & reconnecting withloved ones• Use of non-verbal activities: music-making and listening, art-makingand viewing, use of tactile activities.Encourage seniors to relive timesstill remembered.F’• Reduced memory & emotionalcontrol• Loss of short-term memory• Reduced speech and languagecontrol• Loss of time awareness• Free movement indoor & outdoor tomaintain muscle strength as long aspossible• Provide meaningful activities andspots of interest along thewandering routes.• Continue to work with remainingabilities, assist and support asneeded.-I0-• Restrained with wheelchairs,geriatric chair & bed rails tocontrol perceived problematicbehaviour leads to loss ofmuscle tone• Wandering• Reduced range of movements• Loss of reasoning leads to lossof the right to control personallife, to frustration, agitation, &problematic behaviourNon-responsive environment• Institutional feel contributesto confusion, agitation,isolation, breakdown incommunication.I55CHAPTER III: METHODSQualitative ResearchManning, Algozzine and Antonak (2003) define qualitative research as: “Inquiry designed to discovermeaning 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 formofliving with or observing informants over a prolongedperiod oftime, or actualcollaboration. In short, the researcher tries to minimize the distance between him- orherselfand those being researched. (p. 6)According to Creswell, key issues in qualitative research are: a) the admission and recognition of theresearcher’s biases that are embedded in his or her woridview and life experiences, b) the qualitativeresearcher 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 unknownvariables.According to Roger Grainger (1999), qualitative research “indicates such a wide field of enquirywithin a single project, it involves a great deal of organization and the ability to orchestrate its effects soas to present its conclusions as powerfully and convincingly as possible” (p. 38). He also sees thequalitative research role in describing situations that are difficult or even impossible to measure. Forexample “things that are concerned with the quality of human relationships and what happens betweenpeople. It concerns itself primarily with investigating how things happen rather than trying to bescientifically accurate about why they do” (p. 40).Selecting Qualitative InquiryThe decision to use qualitative inquiry was made deliberately to focus on detailed descriptions andaddress research questions that allow for new understandings rich in information. As Springgay, Irwinand 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 tosettle into a linear pattern of inquiry. Instead there is a nervousness; a reverberationwithin the excess ofthe doublingprocess. Living inquiry refuses absolutes, rather itengages with a continual process ofnot-knowing, ofsearchingfor meaning that isdfjIcult 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 alreadyexists or finding knowledge that needs to be uncovered, action research and a/r/tographyare concerned with creating the circumstances to produce knowledge and understandingthrough 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 myvalues, beliefs, experiential knowledge and goals. AIr/tography seeks knowledge through living inquiryby “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 beingresearched. Irwin and Springgay (2005) used Carson and Sumara’s explanation of action research andapplied it to alr/tography in saying that interpretations of action research and alr/tography practices “. . . are56always 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 ofself and the larger world through an artistic process. The researcher in a/r/tography acts as a facilitatorwho intentionally selects a situation in order to bring on social and/or political change with the help ofconcerned stakeholders.I acknowledge that working with seniors with dementia has its drawbacks, considering that they maynot have the capacity for full blown participation in a traditional academic sense. However, this researchproved that even with various levels of memory impairment, from mild memory impairment (MCI) tomoderate 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 verysignificant in the world of dementia care, where changes are so small that, sometimes, an untrained eyemay miss a brief moment of brilliance. Through the arts and the search for any meaningful gesture by theparticipants, 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 theresponses 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/tographyA personaljourney. By using a/r/tography as a “living inquiry” which is explained as “visual andtextual interpretations of lived experiences” (Springgay, Irwin, and Wilson Kind (2005, p. 5), I was ableto devote the same level of attention to self-reflection as I did to the participants in the study. Ar/tographyinvites the researcher to become aware of his or her multiple roles through artistic and educationalendeavors. A/r/tography also introduces an emerging qualitative method called relational inquiry andwhich is supported by researchers such as Gergen and Gergen (2000) in Denzin and Lincoln’s HandbookofQualitative Research (2000). Gergen and Gergen describe relational inquiry as research based onrelationship, as oppose to the traditional way of conducting research based on an individual approach.As our methodologies become increasingly sensitive to the relationship ofresearchers totheir subjects as dialogical and co-constructive, the relationship ofresearchers to theiraudiences as interdependent, and the negotiation ofmeaning within any relationship aspotentially ramifying outward into the society, individual agency ceases to be our majorconcern. We effectively create the reality ofrelational process. (p. 1042)Irwin and Springgay (2005) use relational inquiry within a/r/tography, which is based on multipleviews as an educator/learner/artist/researcher. Architects struggled for ages to be recognized for theirtheoretical approach to design while doing their practice. A/r/tography and its understanding of relationalinquiry 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 alsothe structural pillars of architecture.In the past architecture was perceived as a profession that was dominated and driven by a fewpolitically and socially influential clients with very little or no input from the public as users. Structureswere built in celebration and adoration of the developers as an expression of power. Architecture today ismore liberal and exercises democratic approaches to hear and listen to the users. The architect of todayassumes 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 thealr/tographers are expected to learn, change, understand and interpret (Irwin & Springgay, 2005). Eachtime I work on an architectural project I add another piece of information to my repertoire, not only froma building technology aspect, but by understanding the psychosocial aspects of the users. Each newawareness brings new ideas and new ideas turn into shapes, and forms and the cycle never ends.57It needs to be pointed out that architecture is not always about a real geographical place. Sometimesarchitecture is defined by the use imposed on the place. For example, a group of people may use thebeach as a place to party and sleep. For that specific short time, the beach is transformed to contain theactivity 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 theunstable 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 throughfrom my work in architecture to my work in gerontology. As I began to make sense of my recalledmemories, I realized that I was dealing with a continuous transformation with multiple and overlappingprocesses that could not be contained easily in separate boxes with well-defined boundaries, starting atone date and ending at another. As I “opened” one area, I quickly discovered that I needed to turn toearlier memories to make sense of recent events in my life. I was compelled to go back and forth andunravel the meaning of what creative expression, architecture, research and dementia meant to me. In thiscase, the act of opening was of a personal nature; however, openings according to a/r/tography can be alsoapplied in relationships between alr/tographers and the others they work with. As Irwin and Springgaysuggest (2005, p. 19) “Another purpose of a!r/tography is to open up possibilities for alr/tographers asthey give their attention to what is seen and known and what is not seen and not known”. Openings alsorefer to losses and discomforts (Springgay, Irwin & Wilson Kind, 2005, p. 9), as Wilson Kind refers toher own losses and difficulties in life. So are the losses seniors with dementia experience and the need tomend 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 whythings happened the way they did and where I was going with them. Through this process I foundrelevance 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). Theserenderings 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 ofdiscovery to dance, the strokes of a brush, playing ping-pong, giving birth, writing a poem, designing abuilding, listening to music, having meaningful conversations— and working with seniors with dementiain 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? IsaacNewton (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 singlephenomenon that combines many colours at the same time and produces a new colour, seemingly so pureand colourless that it presents a clean slate on which artistic activity can begin. Amazing. Although wenow understand the mechanics of this phenomenon it still puzzles our minds. Going back to the multipleroles of the researcher/educator/artist/facilitator, we know it takes time to explain who we are throughverbal and textual expression. Unlike the efficient presentation of white colour, our ability to perceive inone singular act who we are is limited. To make matters even more puzzling, the objects we think we seeare really the light that is reflected back from them in combination with the way we perceive through ourvisual system. This activity of seeing and not seeing, even if we are aware of the phenomenon, createsduality and dichotomy, making us unsure and uneasy. It fits the understanding of alr/tography where, bydisplacing the self with white colour, we may clarify the position of multiple roles and the changes we gothrough while producing a new self, like the new white colour.Inquiry into renderings ofu/r/tography. My overarching goal in providing a creative expressionprogram was to give an opportunity for growth, reflection, and discovery; in alr/tographic terms, to allowsome renderings to play themselves out. While I was going through my own reflections, I was hoping thegroup of seniors with dementia would too. We were in this journey together, exploring the possibilitiesfor 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 the58medical condition keep shifting. There may be good days when the seniors are just as able as those withno 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 situationsthat de Cosson (2002) calls “Aporia”.My own “Aporia.” Alex de Cosson (2002) explains Aporia as a place/concept of difficulty, a fluidentity in between places/ideas that is ever-changing, as the various players discover or rediscover theknown and the unknown. Aporia is a process of making meaning in the context of a present moment. As Iwas preparing the outline for one of the selected sessions for the study on friendship, my own thoughtsstarted 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 theyinvolved in the war in Europe, were they victims, were they fighting with the allies or on the enemy’sside? I worried how it would impact my study and how I would react to the possibility that one of theseniors may have been a soldier in the German army fighting for his country. As it turned out there wereno men in the group at Margaret Fulton and my anxiety subsided. This is my Aporia, as I try to come toterms with a past that has no words to explain what happened. The more I try to make sense of it, themore I get entangled in this sticky web— wanting to believe in the goodness of mankind and yet aware ofthe painful realization that mankind is capable of inflicting the most horrendous crimes on neighbours andfriends, with no discrimination. Yet, regardless of their past, they are now old, frail with limited memoryand in need of help. But so were my grandparents when they were killed. This is my Aporia, my privatetorment of making sense of this world as it relates to my work with seniors with dementia. Like theseniors, I may want to take refuge in the present and unlike them, I am still able to be selective as to whatto remember.There is no question in my mind that some changes are taking place in my own perceptions of life as Iwork with these seniors. As Irwin (2005) describes the subtle changes that take place in her life whenwalking around the UBC Campus and enjoying a fall day: “Each image holds different meanings for methough they represent the same day and time period. Each image teaches me something fresh and alivethrough every new encounter. Each image was birthed as I was created” (p. 3). I too, feel the urgency toenjoy life to the fullest; every minute counts. And while the seniors are going through life assessments, Igo through them too. Although I am not afraid of getting old, I find myself delighted that I still have timeto do things. And when I come into a room full of frail seniors, I count my blessings and feel guiltythinking 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 insociety, I cannot help thinking how the society they helped build is ready to discard, waste and ignorethem. In rendering Excess, society could spare this vulnerable population and recognize their worth insearching for deeper and different meanings.One of the difficulties in linking my artistic aspirations through architecture, research and dementia isin understanding who is an artist? Is it the person who declares himself an artist? One who is perceived tobe 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 isno 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 mybuildings, are they still going to like them in one month or years from now? I see art when I cook, dogardening, sew, knit, give haircuts, design buildings and their interiors. Architects need to considermaterial 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 myown 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 differfrom creating a painting, a sculpture, a play for the theatre, a dance. The architect, the artist, the dancer—59all are trying to express themselves through a creative process that takes in information through thesenses, then digests it while searching for meaning, and delivers it in multiple ways. Each drawing maylead 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 mayhave to do with the fascination I feel working in situations and with materials that appear to the eye veryfragile, such as glass, and yet have hidden and surprising qualities of strength. It is in this paradox that Ifind my most creative moments born. It is the tension between opposites that intrigues me. I am alwayscurious about what may transpire and I look forward to challenges that will inspire new ideas. Not everyroad leads to success but I learn as much from failures. When I got interested in designing stained-glasswindows for the buildings I designed, I was told by experts that there were limitations to how glass wouldrespond to cutting and this would limit the scope of the design. Although I understood the limitations, Iwanted 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 whatsome did not understand was this: the sheer fact that I was not trained meant that I was not boxed in. Icould look with fresh eyes at how to use glass in different ways, for partitions, windows, roofs and evenfloors. I have come to appreciate glass art by doing it. Living it. Like everything else in my life, it seemsthat my practical experiences propel me into new endeavors. Trying to understand how things come aboutand where they are going, I explore the rationale for their being. This back and forth is an effort to makesense of the world, and at the same time be aware of new possibilities. It fits within the six rendering ofReverberations 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 theaccidental shapes of the broken glass. I was drawn to create new compositions, using different techniquesand making a deliberate effort to leave the accidental pieces as they were. I found myself checking eachexcess piece, for its shape, colour and how I could continue to use it. All of a sudden, the leftover brokenpieces were more exciting than the projects I had already designed. At this point, the renderings ofOpening and Excess came into play, inspiring the creation of three-dimensional glass sculptures I call myaccidental projects. As I write about it, I realize that I use the same approach in my work with seniorswith dementia. I try to chip away at the obstacles that prevent the seniors from using their remainingabilities. As I do that, I am aware that their responses may be unpredictable. And like the sharp edges ofthe broken glass, I may need to smooth the rough edges so we can continue to work and minimize theharm.As I walk into the workspaces allocated for art activities in most long-term facilities I have visited, Ifeel so discouraged. The artist in me shrinks at the gloomy prospect of having to pretend that space isunimportant in the creative process. The facilitator in me takes over to mediate the circumstances and dothe best I can under these conditions. The architect in me wants desperately to design the state-of-the-artstudio 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 explorewhether or not it is important to provide an appropriate space and atmosphere that may or may not beconducive to creative expression activities.I very much liked McNiff’s description of space and function in what he calls “the studio”. Architectswho 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 andart therapy colleagues has shown me that they hungerfor it too, and the phenomenon ofart therapy needs the studio. IfI walk into a medical environment with its chemical andantiseptic smells, my soul is aroused only to the extent that I want something else. The60medical environments can sometimes be the antithesis ofart. The studio summons theartist 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 spaceoffers. As she states in her article, Walking to create an aesthetic and spiritual currere, “Whenever I walkinto 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 findmyself pushing against the administration and their resistance to any change in the status quo. Thearchitect in me asks: how can I change the conditions, improvise, use skills and knowledge, useinnovation and creativity? And so, I find temporary solutions in various situations, such as these. I waslining up seniors to paint on a glass partition wall in a long-term care facility where I was conductingcreative expression activities. I knew the glass was tempered, easy to clean, safe and a novelty. Theresults were exciting. The seniors wanted to draw and produced many of the artworks that were displayedlater in an art show on creativity and dementia. On another occasion, I lined up seniors in front of a glazedexterior wall facing into the garden. As the sun was coming around and shining through the drawingpaper 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 camehome, I wrote down every detail that would help me understand what happened that day. At that time, Ishot a whole roll of film that now helps to demonstrate the importance of having an appropriate space forcreative activities.AIr/tography also stresses the role of the researcher as an educator. As Irwin explains in herphilosophy of teaching:Art pedagogues become involved in their own continuous learning while recognizing thepersonal knowledge, interests, experience ofthe students in their care. Pedagogues wishto nurture the growth oftheir students’ emotional, intellectual, spiritual and intuitivepowers in a cooperative learning environment. Learningfor the sake oflearning is notenough. Importance must be placed upon translating understanding into action,empowering students to be active creators and potential transformers oftheir materialand cultural world ... (Irwin, 2005) I do not call myself a teacher as the result of formal education in that profession, I do thinkof myself as an educator/learner. I have taught Hebrew for many years to young children and adults, Ihave home schooled my children, taught interior design to university students and served as a mentor touniversity students over the years. In education terms, I consider myself a facilitator. I facilitate asituation in which the people I interact with are encouraged to express themselves. Working with seniorswith dementia, I find myself learning from them as well. I am there to release what they have alreadyknown for a long time and may have forgotten. I am there to provide information that may be new tothem at the moment, but which I know they knew once before. And so I borrow from psychology thatclaims that familiarity is an automatic inherent human quality— seniors with dementia may feel familiarwith a situation or an object although the memory of it was destroyed. For example, seniors may notremember me as Dalia, the person who comes in once a week to work with them on creative expressionactivities, but they may link my presence with something that is pleasant and enjoyable and perhaps withfood, 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 mindwhen discussing architecture and alr/tography. One is the unquestionable link between the visual61expression of architecture and the text that comes along with it. The second issue is the opportunity thatalr/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 wordarchitecture for “art”. To test the notion of architectural drawings without text we need to ask thefollowing: could a building stand on its own merit without a name, an address, without occupants or thename 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 informationwould we understand the full meaning of its purpose? I would say, no, we would not understand the fullmeaning of its purpose.We should not forget the reams and reams of drafting papers, trails of sketches, meshing art andtechnology and text together. What about the historical written information of negotiations for permitswith various authorities? When we understand that the building is also a product of local and nationalbuilding codes, do we get the full picture then? Looking at a building without knowing its context is liketrying to read Egyptian hieroglyphics. Yes, we can see them, but can our minds make the necessaryconnections 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 inspite of working from the exact specifications, the design would vary from one designer to another. Theindividual 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 thefield. To support this observation, there is an interesting example about how text alone fails without theadjunct image. Although very detailed plans ofNoah’s Ark or the Holy Temple in Jerusalem weredescribed in the Old Testament, we cannot know for sure what they looked like. In artistic interpretationsof the Temple and the Ark, we witness several versions. All claim to be the closest interpretation of thebiblical text.The second issue that deals with architecture as practice and as theory refers mainly to architecturethat focuses on therapeutic environments. Architects do theorize and contemplate through their ideas andplanning as to how things will be done. Architects through their practice and theory generate new ideasand forms and invite the participation of their clients and users. Michelle Fine (2000) was quoted inGergen and Gergen (2000) questioning the future of qualitative research with references to relationalinquiry which fits the process of making architecture: “What elements of qualitative research areproductively engaging toward democratic/revolutionary practices; toward community organizing; towardprogressive 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 anamazing, regenerating force. Like water in a river, our brain will seek an outlet and find ways tocommunicate, to express. We need to provide opportunities and means for everyone, especially peoplewith dementia, to continue to communicate in many forms. We need to listen to the unsaid and to whatmay be missing. While others may accept the appearance of dementia and take its impediments forgranted, we must question that acceptance, look below the surface and tap into the human spirit— of theseniors and ourselves.Just like alr/tography, we need to allow the images, the text, the story, the real and the imagined tocoalesce into meanings so we can understand better how visual and performing arts can be used incommunicating when other ways of communicating fail.AJr/tography allows researchers to bring their own storyline into the situation under study, a storylinethat may influence, intersect, observe and interact with whatever the researcher/artist is engaged with andbrings to the study. A/r/tography gives freedom for the researcher/artist to process theory into the62production of the art. In one singular expression, theory and practice are fused. Artists understand thisfusion; 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 anopportunity to examine the role of the researcher in making a difference in the seniors’ abilities, as theywere demonstrated through creative self-expression, and by changes that were made to manipulate thearchitectural environment. The multiple roles of researcher/educator/artist/facilitator in theimplementation of the creative expression activities program were also explored in an effort to elicitcrucial 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’ChaimAdult Day Care Centre. The design, which is discussed elsewhere in this dissertation, is based on myexperience as a stained glass designer and my familiarity with the Jewish culture and faith. I alsoexperimented with architectural drawings in an effort to shed my position as an authority, the one whoknows better, by condensing key issues that could be understood at a glance, and appeal to variouscognitive abilities in seniors with mild cognitive impairment to moderate dementia. The idea was to bringacross information without having to read the whole document, which would have been a monumental orimpossible task for the participants. The drawings include photographs that were taken of participantsduring the various activities, significant quotes and textural summaries regarding the spaces that wereused during the various sessions. I was also aware that an aJr/tographer did not necessarily have toproduce an artistic product as long as the rigor of the study and its philosophy were maintained. As statedby Irwin and Springgay (2005): “Artists engaged in alr/tography need not be earning a living throughtheir 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 inmy practice many of the ingredients that describe alr/tograpic research. I was interested in experimentingwith ways that would better the quality of life of seniors with dementia with a focus on the links betweencreative expression abilities, space and programs. Experimenting comes naturally to professionals trainedin architecture and design. We are trained to look at the world around us, assess it functionally andaesthetically, to almost automatically and spontaneously look for ways to see things differently. Weassess existing situations of spaces interlinked with human behaviour, and then we revise or design spacesto suit the clients’ physical and emotional needs. And we assess the results of our work, and its impact onthe client’s well being, to judge whether or not the project was successful and whether it answered theobjectives of the project.I was also aware of the balance of power between myself and the participants. I fully understood theconflection between being an architect, researcher, facilitator, educator, when I invited the participants toexpress their opinion as to how I should position myself in the room when I talked to them. I like to standin front of the group, like a teacher in a classroom. No one complained. It was taken for granted that thisis how it should be. But when I opened the floor for discussion as to whether I should sit or stand, itquickly became an issue of exhibiting superiority, the person who knows best, the expert. The moment Isat down, the balance of power changed. As one of the seniors at L’Chaim Centre put it: “You are nowone 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 learnedthat reflexivity, which is sharing personal and subjective life experiences with participants, caffies adanger of silencing participants if the researcher goes overboard telling these stories. I learned that therewas a fine line between getting the participants’ attention with personal stories and the danger ofoverburdening them.Initially, when I planned how the data would be collected, I was aware that some limitations wouldaffect the procedures and the overall approach to this study. First, the opportunity for experiments withmajor architectural changes was slim and, therefore, participation in changing a real situation would notexist or be affected by the feedback from participants. Although I was drawn to participatory action63research, at that point I opted not to use it. There was also deep scepticism about whether people withdementia could participate in research inquiry in a meaningful way. As the study progressedunpredictable new developments made me aware that seniors with dementia could participate in researchwhen given an appropriate opportunity. Since the decisions to make some interior changes were going tobe made very fast, just when I was about to go on a trip, I was asked to provide ideas for floor coveringand wall and door paints. I used data collected in a previous session that included the seniors’ ideas onhow they would like to design their dream art studio in the Centre. After the renovation was completed, Iinterviewed the seniors about the changes again, made notes of their opinions and made some efforts toaddress 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 beflexible 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, creativealternative for research, Shaun MeNiffs work (1986) Freedom ofresearch and artistic inquiry and RogerGrainger’s book (1999), Researching the Arts Therapies, A Dramatherapist’s Perspective support my ownway of thinking. Lenore Wadsworth Hervey quotes McNiff (1986) as he explains the characteristics ofcreative 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 underreview; the mixing ofdisciplines; a willingness to err; intuition; an interest in theunknown; an inability to simplyfollow the tradition oflogical analysis; personal powersofobservation and interpretation. (p. 282)Any artist/researcher who is engaged in artistic inquiry can identify with this description. Artistsinherently resist urgings to follow step-by-step prescribed regulations. A certain rebellious streak leadsartists to veer off the main course and look for ways to capture the process of inquiry from severalunconventional angles.At the beginning I envisioned a democratic style of inquiry, where all concerned participants wouldbe equally important— mainly to protect the least heard people: the seniors with dementia. From a purelyacademic standpoint, conducting participatory action research would be controversial since seniors withdementia need to be declared competent and capable of giving consent. Nevertheless, working within thelimitations of this population, I still managed to accommodate input from the seniors utilizing theirremaining cognitive and physical abilities. As Roger Grainger (1999) put it:Ifwe are lucky, ofcourse, we mayfind exactly the right kind ofresearch technique thatwe need. Ifnot, we must use the most appropriate onefor our purposes. This may meanadjusting 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 ofinformation as possible. Instead of concentrating on observations” (p. 99) made by unbiased observers, allparties have direct input into the research process. In his research he uses “interviews, questionnairesdiaries and journals, narrated accounts of personal experiences, reports of interactions observed eitherovertly or covertly or both, plus the use of video” (p. 100). He also explains that “leaders of the group goto 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 creativeexpression programs and the physical therapeutic environment is Roger Grainger’s book, Researching theArts Therapies; A Dramatherapist’s Perspective (1999). Grainger joins Shaun McNiff in his approach tothe 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 beexplored. Their philosophical approach to research shows flexibility, openness to changes that flow with64whatever arises from the exploration; it celebrates ambiguity, thriving on tension, as the researcher andresearched are engaged in a dance-like relationship.Grainger’s approach literally embraces life. He mixes methods of research as needed. It may be a mixof any of the following: qualitative and quantitative research methods, action research and art-basedresearch. Like Shaun McNiff and others, he draws examples from art, music, dance and movementtherapies. In this way, we see ourselves as practitioners and researchers as the same time. Our research isgrounded 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 rigidscientific rules. The following quote illustrates a fundamental thought that supports the reasoning as towhy 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 donot do this in the sense that we often mean by the word use. They do not subsume them inany way. In the human attempt to be ‘scientflc’ they may try to reduce them to somethingthat can be reproduced in terms ofone own existing mental schemata, but they arebound to fail because art cannot be used in this sense. It has an innate tendency to keepcropping up when and where you were not actually looking. Because ofthe effect itsometimes has on you, your reaction to it, it sometimesfeels that it is it that is actuallyusing you ... Phenomenologically, arts stands apartfrom what it is deeply concernedwith: because it is a living symbol ofrelationship and ‘betweenness’, it can help us in oursearchfor human wholeness. (p. 12)Grainger warns that limiting ourselves to research that allows us to study “what we are able tomeasure” (p.18) will reduce what we really want to know or change altogether the direction of theinquiry.Summary of Research MethodsThis study employed a!r/tographic research within the qualitative paradigm. A/r/tography seeksknowledge through living inquiry and a commitment from the researcher as an artist and educator to aprocess of questioning. AIr/tography recognizes the ambiguities, uncertainties and the difficulties that canarise from situations and seeks understandings of them. A/r/tography allows the researcher to be selfreflective. A/r/tography gathers information from relational conditions that support democraticrelationships with other participants in the inquiry. It also invites participants to be part of the studyprocess and experience the resolutions if they happen. A/r/tography and its understanding of the multipleroles of the researcher and his/her involvement through relational inquiry fits perfectly with the making ofarchitecture 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 ResearchEthics is an area of major concern when conducting research with vulnerable populations such asseniors with dementia. The literature on the topic of ethical issues in healthcare in general is enormous. Ina course on ethical and philosophical issues in community-based research presented by Drs. MichaelMcDonald and Jim Frankish, I had the great opportunity not only to discuss ethical issues that wererelevant to the participants we work with, but also to reflect on my own values and woridview, to beaware of the levels of objectivity or subjectivity reflected in my research. This course coveredfundamental 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 and65problems in conducting research. Issues such as personal rights versus the good of the community at largewere discussed.In studying seniors with dementia we need to be aware of: a). The limited memory capacity andfrailty in seniors with dementia, b). Their ability to give written consent, c). The role of the legal guardianand 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 concernedparties.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 andanxiety in our participants by reminding them of their diagnosis, knowing they may forget about it in fewmoments or in a day or two? h). By not telling them, do we then sacrifice their right to be informed andknowledgeable about the study they are about to enter? i). What happens when a senior with dementiagives consent, but the legal guardian disapproves of their participation? j). What happens if a facilitymanager is reluctant to let research work be done in the facility, even though the resident and the familyapprove?An attempt to answer these difficulties in executing ethical research lies in a fundamentalphilosophical approach to life that can transcend borders of culture and geography: It is the profoundconviction to maintain and respect human life and the right to live in dignity. This respect for human lifetranscends the duty between child and parents and encompasses the duty between an individual and thesociety at large:The home is infinitely more important to a people than schools, the professions orpolitical life; andfilial respect is the ground ofnational permanence and prosperity. Ifanation thinks of its past with contempt, it may well contemplate its future with despair; itperishes through moral suicide. (In Pentateuch and Haftorahs, p. 299)To satisfy academic requirements, I realize it is important to back up personal convictions withliterary 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 ... Aswe 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 thatresearch is value-free. Likewise, qualitative researchers, because they deal withindividuals face-to-face on a daily basis, are attuned to making decisions regardingethical concerns, because this is part offlfe in the field. From the beginning moments ofinformed consent decisions, to other ethical decisions in thefield, to the completion ofthestudy, qualitative researchers need to allow for the possibilities ofrecurring ethicaldilemmas andproblems in the field. (p. 385)Janesick also discusses the need to construct an “authentic and compelling narrative of what accruedin 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 withdementia was the single most important factor in designing this study. Based on my experience I set theseconditions:• Limit the time allocated to each session• Be prepared in case of emergency and have resources in place for support66• Be careful not to expose the seniors intentionally to stressful activities or stressful environmentsin order to prove a point. While some experimental situations can be considered, I would notworsen existing conditions• Limit situations that knowingly keep away interventions that may benefit them• Allow participants to move around and leave at any timeMemory capacity. Based on my experience, seniors with dementia may remember giving consent fortime periods ranging from a few minutes to several hours or several days. It depends on each individualand their capacity to remember. I made sure the seniors were reminded every once in a while of thereasons I interacted with them and the objectives of this interaction.Written consent and dementia. Most seniors with early to moderate dementia can still read andwrite. They may not understand complicated concepts, any more or less than people outside the researchfield, or their peers of normal aging. Therefore, written and verbal information needs to be clear andsimple to understand, without compromising the integrity of the study.All the participants at L’Chaim Centre provided their consent. At the Margaret Fulton Centre, theconsent 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. Inan 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 consequentlyrelinquish their rights to act independently and be solely responsible for their actions. Problems arise ifthe 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 overrideany other. If the legal guardian refuses, if possible, further negotiation can take place in very tactful waysand with full respect for the outcomes. As it turned out, one participant at Margaret Fulton Centre refusedto participate in a couple of sessions. Although her husband was fully supportive of her participation, Ifelt 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 seniorswith dementia and make sure their needs are met according to the policies of the facility. However, somesituations may become sensitive in cases where the research work may be rejected or manipulated for fearit may interrupt the daily routine in the facility or threaten the administration by being critical. AtMargaret Fulton Centre, there were issues with scheduling and the difficulties in assigning staff to helpduring the session. However, at the L’Chaim Centre, there were underlying issues of power and controlthat concerned the director.The trust that needs to be established between the researcher and participants and all otherconcerned parties. This took time, and careful consideration was given to be sure consents were givenof free choice. In both Centres the process for acquiring the consents followed the prescribed regulationsprovided 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 strugglewith when working with seniors with dementia. On the one hand, I am expected to announce myintentions clearly and without ambiguity, yet there is a concern about discussing dementia with theseniors for fear of causing them unnecessary stress. I rely on the administration to provide me withmedical information and to let me know if the seniors are informed of their medical condition. Many ofthe seniors did acknowledge their memory problems. Some knew about their diagnosis but forgot it, anddid not mind being reminded. No one got upset to learn about their condition. I announced my intentionsonly when I felt that it was appropriate to discuss them and when we all felt safe. Generally, I avoided theissue if! could. I believe the participant has the right to know about his or her health condition. However,67I also believe in protecting participants’ wellbeing and this is the point where it becomes an ethicaldilemma with no easy answers.68Sites SelectedThe Margaret Fulton Adult Day Care Centre in North Vancouver and the L’Chaim Adult Day Centreat the Jewish Community Centre in Vancouver were the sites chosen for conducting the intervention ofcreative expression activities and documenting the physical facility for data collection. The two facilitiesprovided different qualities of space, participants, and operational procedures for the program of creativeexpression activities.Figure 4: Locations of Margaret Fulton and L’Chaim CentresThe Margaret Fulton Adult Day Care CentreThis relatively new facility is located at Mahon Park in North Vancouver. It provides a broadrange of health services and support as well as socialization opportunities for seniors. The Centre, built in2000, was designed by Sean McEwen, Architect with significant input from the Centre’s staff. It canaccommodate up to 30 seniors a day, but is funded for only 25.5 seniors. There are four full-timeemployees, 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, BC69The program in this Centre includes nursing supervision, health monitoring, assistance with personalcare, and recreation for groups and individuals. A hot lunch with special diet options is provided. Theprogram also provides valuable respite care for families by taking in frail elderly individuals cared for inthe 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 ingerontology at Simon Fraser University in 2001. The objective of the study was “to determine how adultday care (ADC) clients with dementia are affected by relocation when staff, programming and dailyroutine remain constant” (p. 1) Grant sheds light on the interplay between the physical environment, theuse of the space and the physical and cognitive abilities of the seniors with dementia. She also refers tothe 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 thatindividual” (Grant, 2001, p. 5). Personal competence is described by Lawton (1998, p. 2) as “[Ijntrinsicperformance potential, the maximal expectable performance in biological, sensorimotor, perceptual andcognitive domains.”Figure 6: Interior Shots of Margaret Fulton Centre in North Vancouver, BC70The L Vhaim Adult Day Care CentreL’Chaim Adult Day Care Centre is located at the Jewish Community Centre in Vancouver. TheCentre offers therapeutic, social, and recreational activities for homebound people who are elderly and/orhave disabilities. It provides a Jewish atmosphere and hot kosher lunches. The Centre, established in1985, moved to its present location in 1996 after the entire building was renovated. It can accommodate15 seniors at a time and has 10 part-time employees, no full-time employees. The Centre has 16volunteers, 12 of whom sit on the board of directors. It covers about 1,400 sq. ft. The Centre includes: onelarge lounge with furniture that defines areas for various activities, some lounge chairs for relaxation, afish tank, kitchen area, washrooms, outdoor deck, two offices, storage room and treatment room, whichwas used for storage until recent changes to the centre. It is now a treatment room again.A SINFigure 7: L’Chaim Centre Exterior Shots71Participants SelectedThis study focused on men and women with dementia over the age of 60 at the two adult daycareCentres. The initial ann of this study was to explore how the physical setting supports, stimulates orhinders the learning environment for seniors with early to moderate dementia to express their creativeabilities. As the selection of participants began, it became apparent that selecting a homogeneous group ofpeople in both Centres would be too difficult to achieve. Of the two Centres it was easier to select a groupof participants of similar cognitive abilities at the Margaret Fulton Centre, since it was geared to servedifficult cases with more advanced dementia, while participants at the L’Chaim Centre were of mixedabilities, ranging from normal cognition with physical frailty to mild cognitive impairment to moderatedementia.72Figure 8: LChaim Centre Interior ShotsOver the course of this study, emerging new information became available on mild cognitiveimpairment (MCI) and the significant implications of detecting this condition as early as possible. MCI isa stage in memory decline between normal aging and the diagnosis of Alzheimer’s disease (AD). It issometimes referred to as amnestic mild cognitive impairment (aMCI) and is characterized by a mildmemory 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 mayhelp people with MCI to halt the deterioration. Several studies underway are exploring memoryintervention in aMCI. One of them is funded by a 2003-2005 Alzheimer’s Society of Canada grant, whereDrs. Troyer, Murphy, Anderson, Craik, Moscovitch & Marziali examined the effectiveness of amultidisciplinary 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 newnames. Given the recent information on MCI, participants who were diagnosed with MCI, were includedin the interviews and the intervention in this study.The selection of the participants was controlled by the directors of both Centres. At the L’ChaimCentre, 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 potentialparticipants —later was reduced to seven people— with group of five women who stayed together throughmost of the four sessions.Figure 9: Participants at the MFC and LC Centres73Data CollectionThe data was collected in several ways. It included field notes, filming, photography, and drafting. Nofield notes were taken during interviews. All field notes were written immediately after each interviewand each session. The field notes were based on my perceptions and were entered on a computer. The filmactivity was recorded and coded; the recordings were transcribed verbatim. The digital photographs weretransferred to the computer, and the drawings were entered on the computer in AutoCad.Recording the Intervention1. Field notes. Notes were written immediately after the activities were completed, usually within 4hours. They included my personal observations, feelings, thoughts, comments, understanding ofwhat 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 transpiredduring the sessions I could not catch in the moment, whether it happened out of my range ofsight, or I was too busy to see or hear the importance of the event when it occurred. It also gaveme a more comprehensive view of individuals and of the group, and the ability to review itseveral times.Two cameras were used: a stationery camera and a mobile camera. One Sony PD 100 DVcamcontinuously filmed from a fixed wide-angle position showing the entire group seated around myworking area. It used 3 hour tapes. The sound was recorded from one wireless microphone I wore. Asecond backup mini DV camera was used for close up and roving shots. This camera required tapechanges at 90 minute intervals. Normal room lighting was used except for one test sessionexperiment using added focused light. The video tapes were then transferred to VHS viewing tapeswith 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’ChaimCentres and the same for the VHS tapes. The timeline that was inserted on the VHS tapes for editingpurposes 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 author3. Transcribing. A UBC student was hired to do the bulk of the transcribing. I checked the text foraccuracy as I reviewed the video tapes. After the films were transcribed I selected the mostsignificant moments to be included on a DVD that is attached to this document. Although someinformation was lost in the process viewing the videos for accuracy helped tremendously, since Icould then concentrate on smaller details. It actually forced me to pay attention to the smallestsounds and to translate Hebrew and Yiddish into English. Transcribing verbal sounds into textwas 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 stimulussuch as hearing and seeing. Transcribing was an essential part of the study that complementedother ways of collecting data.4. Photography. I kept a digital camera with me at all times. I have used photography for manyyears as a way to freeze interesting moments wherever I go. This study was no exception. Withthe consent of participants, families and the administration of the Centres, I took photos ofparticipants interacting, laughing, holding a violin, doing artwork and dancing during thesessions. I did not use the camera when situations were sensitive, since early on. I decided that theneeds of participants would come first before the needs of my research.745. Drawings. I used sketches and photographs to document the location of furniture, cupboards, TVscreen, music instruments and plants. Floor plans were supplied by the architect of MargaretFulton Centre and the building manager at L’Chaim Centre. The drawings of Margaret FultonCentre were up to date. The floor plan at L’Chaim had to be redrawn since the measurementswere not to scale. The information was given to a BCIT student who used AutoCad for transfer tothe computer. I worked closely with the student and provided additional information in free handdrawings. Once the information was entered into the program, we could move things around andexperiment with sizes and distances in a fairly short order.The room arrangement for each session at the two centres was documented. It included thefurniture placement, room dividers, all the fixed features such as doors, windows, lights, kitchencounter and sink, where the participants were sitting, where I positioned myself, measurements ofdistances between participants and objects, the location of the camera and the camera man, themusicians and the musical instruments, and the TV. Each drawing was accompanied with stillphotos that were taken at the same session and included photos of inside and outside spaces. Allof this information was used in the final drawing for each Centre and contained recommendationsfor future architectural changes.6. Interviewing. The participants were asked if I could visit them at home for an interview. Idescribed the style of the interview as a relaxed conversation. I made a point of not taking notesduring the interview, nor did I use the camera. I felt privileged to enter their private life andwanted to keep it that way. For ethical and safety reasons, in my later notes I did not give toomuch information about the participants’ homes for reasons of privacy. In the case of participantswith more advanced dementia, I called the families to arrange an interview once the participantsthemselves expressed an interest in doing so. Wherever possible, I preferred that a family memberwas present. The interview lasted from one to two hours. The visit was designed to give me someclues about the interests the participants may have had in the past and in the present. It was anopportunity to see hanging photos or photo albums of family, friends, pets and traveling. It was atime for reminiscing and sharing life experience. The information collected was then used inways to attract the participants’ interest in the creative expression activities program, such asasking questions that were relevant to them. The interviews gave a better understanding of theperson inside the disease. As a researcher I found the life experiences of the participantsfascinating; they enriched my own life experiences and helped me connect and bond with thepeople I was studying.Analyzing DataI was looking for new understandings and emerging categories from recurring situations that couldeventually congregate into patterns. I also was looking for unique moments that stood out and containedsignificant information. I identified these patterns by using color coding, available through -MicrosoftWord. As I read the written data, I assigned a color to each situation, such as being anxious, sharing lifeexperiences or expressing an opinion. The color coding turned into a legend that grew more refmed as thestudy progressed. The legend was re-adjusted, upgraded and re-inserted on each document as I searchedfor details that had escaped my attention. If necessary, I added highlights to the missing analysis. Towardsthe end, the legend grew quite comprehensive and patterns took visually and contextual form. Thistechnique appealed to my artistic taste and called on my curiosity as to what color code meaning whatsituation, activity or behaviour were most prominent.Legend (example)Needs Hebrew translations from the video and inserted into the_____________transcriptions.Dalia sharing personal information75IIParticipants sharing life stories. Reminiscing.Participants’ acknowledgement of memory problemsMemory and behavioral issuesSpace Issues (lights, circulation, finishes etc)SocializingParticipants evaluating/commenting on to day’s sessionParticipants enjoying music and the session. Showing interest.Non-English Words (N-EW’s)Staff interfering with activitySafety issuesIdeas for future sessionsShow this in a clip where relevantPart cpints be art suppliesDali g instiTools for Collecting Data: InterviewsInterviews with Participants at Margaret Fulton CentreOriginally, eight women were selected at Margaret Fulton Centre toparticipate in this study. Seven of them participated in some or all of thesessions. All were previously diagnosed with dementia. Their ages were66, 72, 76, 81, 83, 87, 92 years old. The oldest person participated in onlyone session out of four sessions; she stopped coming to the centre formedical reasons and therefore was not interviewed. Another was admittedto a long term care facility and stopped coming to the Centre altogether.The remaining five women formed a core group that participated in mostsessions. Three participants were interviewed in the presence of theirhusbands. One participant was interviewed in the presence of her daughter.The following is an example of the field notes that were taken immediatelyafter the interview was completed.Figure 10: Margaret FultonCentre Art Facilitator and aParticipant76Example Interview with a Margaret Fulton Centre Participant: July 27, 2005 Interview withMargaret Dyks and her husband at their homeI made a mistake. I arrived one day early for the appointment. I wrote it a little messy in my calendarand 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 whereMargaret had a tooth fixed. Margaret was dressed in a sweat shirt and was pulling on her sleeves to coverher hands. Bill was in shorts, a T-shirt and sandals. It was a hot day but Inoticed 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 motherwould 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 eyecontact with her. She kept onlooking at Bill as if asking for approval before she answered my questions or even responded to any ofmy comments.was telling me about their 3 grown children, 2 daughters and one son He also told me about theirj!utine and skating. Bill gave me an envelop with copies of a letter to the editor of the North Shoreerand 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 upon the advice.Margaret seems to show interest when the topic of discussion is about skating and singing. At one point Iasked Margaret about her singing in her church choir and if she enjoyed it. Her answer was short” I am asinger” and she looked at Bill at the same time. I was there for about 2 hours. During that time Margaretsat 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 noticedthat the phone was covered with phone numbers not in an organized fashion. Bill saw me looking at thatand he was quick to explain that it was to help Margaret remember phone numbersTowards the end I asked Margaret if she would like me to come back. She responded by shrugging hershoulders and twisting her lip to one side, as if saying she was not so sure about it. I have to admit, I wassurprised at her response, and yet I needed to be reminded that having dementia might bring out responsesthat usually would be more controlled.When I left, Bill was very apologetic and waved good bye.‘Itwas apparent that Margaret trusts her husband Bill and is dependent very much on his care They still goout to music events, skating and occasionally see friends for dinners orir:h.77I visited 9 out of the 14 participants at home in an effort tolearn more about their background, families and interests. I didnot visit two of the participants that were identified as havingnormal cognitive abilities; I was mainly looking for clues inthe participants’ own home environment that might provideinformation on their interests in art work, home decoration,taste in colors, hobbies, and to listen to their life experiences aswe leafed through their photo albums and photos hanging onthe walls. By doing so, I gained a better understanding abouthow to engage them during the intervention of the creativeexpression program. The following is an example field notesthat were taken immediately after the interview:Example Interview with a L’Chaim CentreParticipant: July 14, 2005 Interview with Jack BeckowI 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 aboutthe 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 comeover. 1-Ic was not sure he could tolerate Michel’s talk and attiti . I told him that, in private, he isreally 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 primeministers of Canada I asked Jack about it he answered that Trudeau was the best politician in Canadaand 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 likea person was crucial in hisWInterviews with Parncits at the L’haim CentreFigure 11: L.’Chaim ParticipantsEngaged in Art ActivityI a consultation session. I__________His financial advisor and a family member had justnot meet them. Jack planned it so I could be with him alone.78I told him that I am finding it interesting that at least three men in our group are design-oriented and Iwouldn’t have known that if I had not talked to them individually and seen their work. Michel was afashion 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 theparticipants in the study, I have decided to ask the participants to design their dream art studio/orcreative expression activities. Jack thought it was a great idea. He had a wonderful smile on his/bce andI 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 HomeGetting to know the person inside the conditionFinding clues that would attract the attention of the participant and make the activity programrelevant for himAllow the researcher to develop a better understanding and bonding with the participantEncourage the sense of familiarity between the participant and the researcherMeet relatives and friends that form the support group and gain more infornntion through themwhen the participant can no longer provide itSee the participant in a home environment and look for differences in behaviour that may impacthis or her participation at the CentreTools for Collecting Data: A/r/tography Field NotesAs the program developer, facilitator and researcher, I was the person responsible for the design andimplementation of the program and assumed the role of participant/observer. I visited the two sitesnumerous times before the study began in an effort to get to know the staff, the directors and the physicalenvironment. At the L’Chaim Centre I conducted a workshop for staff and volunteers. My intimateknowledge of the Jewish faith and culture proved to be an asset that worked well for me and theparticipants. At Margaret Fulton Centre the situation was different. I felt 1 needed more time to becomefamiliarized with the facility, its staff and operational procedures. For that reason, I volunteered atMargaret Fulton Centre for several months before the study began and came to understand the multicultural nature of this Centre, with clients who came from different countries, faiths and races.My own recent brush with serious medical problems opened an emotional connection with the peopleI worked with and led me to a different level of understanding of the meaning of sickness; diminishingenergy, of being dependent and needing help from family, caregivers and strangers; the desire to becounted and noticed as a person, to be helped but not pitied. I have developed a deeper understanding ofthe meaning of constant pain and its impact on our cognitive and emotional abilities and expression.The field notes provide insight into the various roles I assumed through intentional planning orthrough events as they arose. These field notes, written immediately after each session, deliberatelyseparate the many roles that I assumed in this study. This exercise proved to be difficult at times, since thevarious roles happened concurrently. Trying to establish when one role starts and another finishes was anartificial, analytical exercise. However, there was no other way to write simultaneously about all the rolesat once. For example, if I could describe my roles through music, I could have assigned instruments toeach role and played them all at once in an orchestra. However, since I am not a composer, writing mustremain my tool for expression, with additional help from the visual arts as the study progresses.79The colourful legend attached to each report was developed as the study progressed and as issuescame up and evolved later into concepts and patterns. This coding continued to expand into other areas ofthe data collection and its analysis, through the field notes to transcribing the films.Example at Margaret Fulton CentreJuly 19,, 2005: Hand Massage Session and the Big WalkoutLegendSpace issues, furniture, lightsE-Mails correspondence with staffAny problem to pay attention to, such as behaviour, safetyI I Ask David about camera work and room layoutResearcher using knowledge from architectureI I A point to check again. Ideas for future considerationPresent: Dalia, David. Seniors: Lucia, Margaret, Elena, Carol and Betty.Weather:Transportation: My own vehicle. David came separately in his car.ResearcherState of my own mind: I was not worried about the session at all. I knew what I was going to do and Iwas ready for whatever would transpire. I am still sad that Carmel left and I did feel her absence. In thelast month she became a very important part of my work with the seniors with dementia.My physical and emotional state: I was ready and felt good. I have to admit that I feel more connectedwhen I work with Jewish elderly. There are so many things in common that need not be explained. Thecommonality of tradition, faith, the Hebrew and Yiddish languages, the familiarity and the nuances ofsimilar mannerisms and sense of humour. I think that this kind of familiarity provides a sense ofconfidence, safety, warmth, soothing and embracing. Perhaps it is a sense of knowing you belongsomewhere. Being an immigrant to Canada myself, I am very much aware of the need to belongsomewhere. That is why I try my best to integrate the two Spanish-speaking women, Elena and Lucia, asmuch as possible, but not nearly as much as I would have liked to do if I knew how to speak Spanish, orcould have the support needed for them.Preparation for the session: I decided to divide the group into two. The English-speaking women,Carol, Betty and Margaret in one group and the Spanish-speaking women, Elena and Lucia in the secondgroup. I prepared one of my sessions on cosmetics, beauty treatment, hand massage, creams, lotions andsmells. I brought with me lotions I bought in Israel, products of the Dead Sea, small towels and manicurematerials. I also selected background music from the tapes at the Centre.Educator/Learner FacilitatorI and asked if I would consider having Elena and Lucia join the session. I told herI would need to think a little and that I would give her an answer in a few minutes.80Instead, I used a card table 3x3 feet, which presented adifferent kind of dynamic in the physical proximity between myself and each participant.I told Maureen I will stay with the 3 women. Joan Skeet arrived and asked if she could bring the womenin. David and I agreed. Joan arrived with the women and I could see right away that-n saying she had spent all morning in this room and would like to be outside._________but could help bring in the participants. Carol was tlying to convince Bettyto join her. l a walk. Margaret was inagreement that she Joan was looking at me andwaiting for a sign about what to do. I told h... women are free to do whatever they want and that it wasmore important to protect their right to control their own lives.Joan took them out and I was talking to the camera and to David about what happened. As a reminder, atthe last session all the women agreedWhen Joan came back with the women, . I was glad that Joan finally took her out.That was the right thing to do. However, Betty was sitting down and Joan urged her to stay. At thismoment I let Joan control who stays and who goes. The participants trusted her and liked her. And so,Carol left, Betty stayed and Lucia and Elena joined us as well.The situation called on my skills as a facilitator, my knowledge of ethics issues of people with cognitiveimpairment and their right to live in dignity. I felt I was equipped to handle the situation in an appropriateway and the courses I took on ethics issues in health care were very important.David stayed in his usual corner and filmed towards the windows.When I came into the room David had set up for the sessiontoday of massaging hands, where I needed to reach every participant. I thought the round table wouldhave been the best choiceI think I need to design a new table that would answer many needS and usesArchitectlArtistlResearcher/Facilitator— We settled for a cardadded a fifth chair for me.of the room with 4 chairs around81Example at the L’Chaim CentreJuly 18, 2005; Designing a studio for creative expression activitiesLegendSpace issues, furniture, lightsI I E-Mails correspondence with staffAny problem to pay attention to, such as behaviour, safetyI I Ask David about camera work and room layoutResearcher using knowledge from architectureLJ A point to check again. Ideas for future considerationPresent: Debbie, Dalia, David, June, 3 volunteers. Seniors: Jack, Ruth, Tobi, Irena, Sonia, Avram,Harriet, Sara, Anita.Weather: •Transportation: My own vehicle. David came separately in his car. June came along to help. David and Iwent for lunch afterwards at Enigma and out to UBC to take photos of UBC sites for our Society’s website. June went back home separately with my car.ResearcherState of my own mind: Carmel left for NY and Israel two days ago. It was a very emotional departureand painful. I was wondering how I would handle the situation if I was going to be asked if she hadalready left. The seniors showed a great deal of interest in Carmel and her travel plans, especially hergoing to Israel.My physical and emotional state: I was very relaxed and looking forward to the session today. I wantedto see what the seniors would come up with.Preparation for the session: I called Debbie at home and discussed my plans for today’s session. I toldher I am going. I explained that I would conduct adiscussion first of what a creative expression studio needs in general, and what it needs when it isdesigned for seniors. for various reasons. First, not all theparticipants have dementia. Second, I felt there was no reason to make this point and embarrass or causeemotional stress to those who have dementia. I was interested in having their input in the planning and atthe same time observe their abilities to express themselves.Supplies for the session: B lead pencils, already sharpened with erasers on the pencil ends. It turned outthat separate erasers that were heavier and bigger were better for the task. I also brought 14x1 7-inchsketch paper, suitable for pencil and pen. The paper was acid-free and 100% recycled. I was not sure ifthe size of the sheets would be sufficient for the task; however, they turned out to be a good size.Educator/Learner FacilitatorThis session was especially interesting for me as an educator, learner, facilitator and architect. I knew Iwas going to stretch to the limit the creative abilities of the participants. I knew this was going to beintense and would demand a great deal of focusing on the topic while utilizing planning abilities and then82expressing them on paper. I knew that very few people have drafting skills. And yet, I wanted to givethem the opportunity to be part of my work in a meaningful way. Until today, I was the one in the leadingrole. Today, I wanted to hear and learn from them.I knew I had to approach the session very carefully while creating an understanding about what I amlooking for. I began by telling them that their input is important and may contribute to a better space forcreative expression.I knew there would be a stage of self-doubt, of in something so new in a centrelike this. I also tried to change my position in the room from standing to sitting. The seniors really liked it.Jack said: You are now one of us and not like a leader. This was exactly what I wanted to portray. Ifinally managed to find a situation where I could tip the balance a bit and be on more ‘withthem. This is a stri in all ii work with seniorThis awareness is actually at the forefront ofmy work with seniors, but it is not always possible to achieve:• Any group of people waiting for a project to take place waits for instructions• Some seniors with dementia are not any different from well seniors but they may need moreencouragement, more appropriate information to work with, some guidance to makeconnections, and some patience on the facilitator’s part while the brain makes the connectionsthat lead to expression.As the project progressed it was fascinating for me and the staff to see the level of involvement andexpression that was demonstrated today It definitely validated my long-held observation that withappropriate approaches and challenges, seniors with dementia may rise to the occasion and revealmore óf:théfr blltiesthanpnviously deiflittrated.Architect/ArtistThis time I decided to turn the U-shaped orientation towards the windows. Myintention was to create a visual buffer between the main entry and the participants sitting in the room. Ilocated the wicker partition to block the main entry from the visual field. The notice board was wheeledin between the kitchen and the activity space. It was later wheeled out in front of the participants todisplay sheets from the extra flip chart.We knew that the seniors would be looking into the windows and into the light. We also knew that Iwould be seen only as a dark figure because of the light behind me. We were prepared to experiment withthe existing lights, adding lights and changing the position of the window blinds.Findings:1. With the exception of one person, most seniors did not like the existing fluorescent lights. Thecomplaint was that they were too bright and harsh. Except one, most preferred the less harshlights.2. Most liked a spotlight on me since it helped them see my face better. However, the participantswanted a spotlight with softer light. David inserted a filter that dropped the light by 50%.3. Most seniors, except one, liked the softer light from the ceiling even during their project. I thinkthe white sheets on the table reflected enough light back.4. We closed the window blinds that were close to the participants. They liked it better.5. The notice board was in the dark and needed to be highlighted. We moved the spotlight that wason me to highlight the board. Everybody agreed it was much better.836. I noticed that no one paid attention to the main entry and that people who did come in left theroom very quietly, once they realized that there was a session in progress. It was much easier forme to engage the participants in the activity and we were less exposed to interference.The sessionThe session today was to program, plan and design a creative expression studio.This time the participants were the clients and the designers. Westarted with laying out the program, which focused on the activities and the needs of the users.Debbie was writing down key thoughts that the seniors expressed. I was helping to direct and clarify whatI was looking for. Within the first hour we had a program. We also went into interior finishes, such asfloor finishes, wood flooring, carpets, mirrors, colors, curtains and so on. All of the items can be reviewedon the video and on the sheets from the flip chart Debbie worked on.We then proceeded to draw the spaces. I told the participants to ignore sizes and concentrate on how thespaces relate to each other and not to be afraid to write and explain the drawing. Some people took to itand started to draw right away. Tobi seemed to be very involved in the project and wanted blue, red andwhite to be the dominant colors in the studio. She also drew a swing in her studio. Others wanted toparticipate in the project but asked for help in drafting the spaces, and so, together with the helpers, theycame up with the space they wanted to see.Jack and Avram joined forces and collaborated on the project. Anita was reluctant at the beginning butended up with an elaborate drawing. Michael was reluctant but with encouragement did manage to putdown his thoughts. Ruth worked with Heather (a helper) and seemed to be enjoying it. Harriet was rightinto it. Sara enjoyed it and told me at the end that she was going straight from here to apply to anarchitectural school. I loved her sense of humour. Sara had a helper too but was very instrumental ingiving directions. Debbie was working with Tobi and went along with whatever Tobi wanted. Later,Debbie said to me, “It was amazing to watch what was going on.” I told her, I was amazed too and resultslike these make all the effort worthwhile.Figure 12: A Senior with Moderate Dementia at the L’Chaim Centre Designs her CreativeExpression Studio84The analysis of self when interacting with seniors with dementia for the purpose of improving theirarchitectural environments that would accommodate their cognitive and physical needs is an importantpart of understanding the world the seniors with dementia live in. The multiple roles of the researcher asan educator, facilitator, artist, architect and gerontologist are all intertwined. Understanding the physicalenvironment and its appropriateness calls on expertise from several disciplines. Although it was difficultto separate the roles at times, it was a worthwhile exercise since it translated deep buried intuition into anawareness that later became a tool in designing spaces for seniors with dementia. For example, ininteracting with the participants I realized, based on literature review and my own experience that the bestdistance for interacting with a person with dementia is within a radius of 4 feet around them and at eyelevel. This observation has implications about what we can fit within this space. Since it is so small, weneed to think about where we position ourselves in relation to the participants: who or what should webring into the circle with us? What activity would revive interest and how should we present it to be mosteffective? Is one specific artistic style of presentation better than another? How far do we go asresearchers in the sometimes elusive quest for meaningful change?Figure 13: Participants at L’Chaim and Margaret Fulton CentresSignificance ofAir/tography Field Notes and Analysis85AIr/tography helped bring issues to a new awareness. I did not always have answers to my questionsbut at least I was aware of them. A/r/tography is not so much about finding answers as being aware ofquestions in an ever evolving stage. In the process of interacting with seniors with dementia, I found outmore about myself. It actually had therapeutic effects on me. It allowed me to discharge emotions andexpress myself in many ways. No boundaries were enforced on me, but the principles of ethics. DavidMaclagan (2001), an artist, art therapist and a lecturer at the Centre for Psychotherapeutic Studies,University of Sheffield argues that “...where communication of various kinds between conscious andunconscious takes place, can in itself be therapeutic in this sense” (p. 90-91). So the wheels turned, I wasthere to help the seniors with dementia and found myself going along for the same ride. At times, themultiple roles got me into troubled relationships and misunderstandings as a demanding society called onme to define what was I exactly. Was I an architect, was I an expert on dementia, was I a gerontologist?A/r/tography allowed me to be a person who was sensitive to issues those experts were concerned with.The biggest question is how to translate this theoretical approach to life to the practical world outside ofacademia?86Figure 14: Participants at the L’Chaim Centre Engaged in Music ActivityTools for Collecting Data: FilmingI chose to film the creative activity sessions with the participants in order to free my attention so Icould concentrate on interacting with them, while at the same time making a complete record of theirbehaviour and mine in the spaces selected for the activities. Filming allowed repeatable analysis of thephysical environment and documented the use of space and circulation. Filming also helped focus myattention to details that escaped my mind. When events are seen from another angle, we have additionalways of understanding. Filming produced a rich source of information in a relatively short time withouthaving to subject the participants to prolonged experimental situations. According to Ranneskog,Asplund, Kihlgren, & Norberg, (2000), video recording of music activities with seniors with dementiaallowed the researchers to focus on facial expression without having to interfere or get too close to theparticipants. It also allowed repeated examinations of the raw material until reasonable interpretation ofthe event was achieved without having to go back and bother the participants again.David L Brown, who has collaborated inproducing videos on my work with seniors, is thevideographer. Over the last two years, David and Ihave learned much about filming seniors withdementia in their environment. David is familiar withmy interest in specific behaviours or reactionsexpressed by the seniors. Together, we try to catch on-camera behaviours we would like to revisit and try tounderstand. David has given me a rare opportunity tostay engaged with the seniors as a facilitator, and stillhave a say in the.We used two cameras: One camera was stationarywith a wide angle lens, while the other moved andfocused on details as they occurred. The videos wereanalyzed for behavioural patterns, verbal and nonverbal responses to the sessions as they were conducted in different spaces. I opted not to use a softwareprogram for video analysis since the number of participants was relatively small and manageable. I alsoenjoyed aesthetically the method I selected to color code similar ideas, events and behaviours intopatterns that carried not only textual information but also fed my artistic curiosity about using the arts inthe service of science.We considered several sites before selecting the two for this study. Being able to film