Actividad 3: Caminando a ciegas por el colegio

A consideration of published information on art and dementia and wellbeing

In the previous chapter, The Introduction, the parameters of this research project and its methodology were outlined. This research project is a phenomenological study of the lived experience of participants living with dementia in residential aged care. The overall scope of this research project is not wide because it is primarily concerned with the investigation and gathering of information pertaining to the lived experience, wellbeing and skills of individuals living with dementia as they participate in a particular phenomenon, in this case an art activity. Therefore, this chapter, while wide ranging is not a comprehensive review of publications on the creative arts therapies in dementia-specific care in general; such sweep would be too wide a compass for the specific aims of this research project. Instead, this chapter is limited to a consideration of literature relating to dementia-specific art activities and wellbeing and the question of art activity facilitation to identify any gaps to progress the research project thesis.

It is envisaged that such a sweep and consideration of the literature might yield a two-fold value. Firstly, it will enable the principle researcher and the reader to understand more aspects of the lived experience and the often hidden creative ability of those in care. And, secondly, that the outcomes of the research project might assist recreation workers and art activity facilitators in the workplace in the future, to gain a deeper appreciation of dementia-specific art, and the unique role it has to play in wellbeing.

A consideration of information and opinions relating to the concept of dementia-specific wellbeing is separate and located in Chapter Nine - the

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Discussion Chapter, and not included in this chapter. It seemed appropriate, practical and logical to position it in Chapter Nine - the Discussion Chapter, keeping an exploration of the concept of dementia-specific wellbeing and the lived experience closer to the discussion of the research project in general.

This consideration of the outcomes of current research trials and longitudinal studies on the subject of art and dementia begins with an introduction preceding a review of a study by Rusted, Waller and Sheppard (2006). An independent assessment by the author of this thesis of some, but not all, of the key articles on art activity and dementia identified by Gottlieb-Tanaka and Graf (2011) in their meta-analysis (soon to be published by the Canadian Alzheimer‟s Association), will be followed by an overview of a few selected general articles relating to dementia-specific art activity and facilitation that are not research trials or longitudinal studies. A critical appraisal of the content of selected books, in which the different ideas and facilitation approaches that experienced facilitators in the field hold and employ, will be put forward and discussed.

Barrett and Bolt (2007, p. 189) recommend creative arts research should be set in both an “historical and contemporary context”, all the better to highlight the “gaps” of the past and the challenges for the present and the future. This chapter will culminate by positioning this research project in the context of any identifiable gaps.

Introduction

The International Psychogeriatric Association‟s (IPA) education pack, Behavioural and Psychological Symptoms of Dementia (BPSD) Module 5, confirms an important observation. Module 5 states that, in dementia care, “in the past the need for social and recreational therapies has been overlooked” (IPA, 2002, p.11). This is perhaps the major reason why research studies that

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focus on dementia-specific art activities for those living in care are few and far between. Brooker (2007) adds:

Given the heterogeneity of this population [those living in dementia- specific care], the varied skill level of staff, the enormous variety of settings where activities take place alongside the problems of finding suitable outcome measures, it is not surprising that the research evidence for most of these activities appears weak (Brooker, 2007, p. 25)

Aside from the paucity of general information on dementia-specific activities, with few notable exceptions (Levine-Madori, 2007 & 2011, Baines, 2007), there is almost no published material that describes in any detail the techniques and processes that art facilitator‟s implement during art activities sessions.

Less than five years ago the author of this thesis began her academic studies into dementia and the creative arts therapies. The author undertook an exhaustive literature search looking for published research on dementia and art activity and other creative arts that fall under the rubric of non- pharmacological interventions (NPI). At the time, PUBMED, one of the major healthcare search engines listed thousands of research articles on every medical approach to the treatment of dementia, but it listed not one single article on the relationship between art and dementia. When other health and psychology search engines, including biomedical databases such as Medline and CINAHL, were accessed, they too yielded scanty information and far too few references for a comprehensive analysis of the subject.

In desperation, the author sought assistance from the professional librarians of both Melbourne and Victoria Universities. Not surprisingly, the librarians could only source a very limited number of articles. After an exhaustive search a core group of eight articles, including one by Cohen-Mansfield (2002), and another by Grazel, Wiltfang and Kornhuber (2003), were located under the heading “treatment for behavioural complications of dementia”. This core group of articles formed the beginning of the author‟s collection of articles on dementia-specific art and NPI.

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Which is not to say that systematic literature reviews on psychosocial dementia-specific activities do not exist, but they are few (Ayalon et al., 2006; Bartels, Haley & Dums, 2002; Basu & Brinson, 2010; Bird et al., 2002; Finema et al., 2000; Livingston et al., 2005; Opie, Rosewarne & O‟Connor, 1999; Robinson et al., 2006; Verkaik et al., 2005). The Livingston et al. (2005) review, for example, claims to have identified in excess of sixteen hundred studies on NPI generally, but, using the Oxford Centre for Evidence Based Medicine criteria, the authors claim, except for one hundred and sixty three studies, neither the methodology nor the data analysis was “rigorous enough” to provide conclusive evidence of the effectiveness of the interventions.

Depending on the reviewer‟s performance criteria, the efficacy of art in dementia-specific care is usually regarded as inconclusive for a number of factors, not least that too few “controlled”, research-based, art studies are conducted. As already mentioned in the introduction, at the time Grazel, Wiltfang and Kornhuber (2003) began their comprehensive literature review on the proof of effectiveness of NPI in 2002, they found no controlled studies of dementia-specific art activity. Even though the Livingston et al. (2005) study demonstrates there are plenty of qualitative research studies on art activity in existence, a lack of controlled studies gives the impression that there is no evidence at all of the value or effectiveness of art for those living in dementia- specific care. The authors surmised the reason why there are few controlled studies into art and other NPI is because there “are no commercial interests tied in with NPI [and] the politics of research are all but completely dominated by the belief that effective treatment may be expected by biochemical- pharmacological approaches” to dementia care (Grazel, Wiltfang & Kornhuber, 2003, p. 123). Marshall and Hutchinson (2001) point to another set of factors that includes culture, race and ethnicity and the lack of a theoretical framework to guide most studies that end in research results that are both subjective and interpretive.

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Over the past fifteen years there has emerged an increasing body of qualitative evidence examining the role and benefits of art and NPI for those living with dementia across a variety of healthcare settings (Allan 2003; Allan & Killick, 2000 and 2002; Balzac, 2003; Basting & Killick, 2003; Camp, 2001; Cohen, 1995 & 2001; Crutch et al. 2001; Emery, 2004; Fornazzari, 2005, 2005a & 2011; Gottlieb-Tanaka, 2004 & 2006; Greenfield, 2000; Henschel, 1996; Heron, 2000; Jensen, 1997; Johnston, 1992; Kahn-Dennis, 1997; Kamar, 1997; Kelly, 2007; Killick, 2000 & 2003; Killick & Allan, 1999a, 1999b & 2001; Kitwood, 1995 & 1997; Koenig-Costa, 2004; Kovack & Lloyd & Papas, 1999; Kuhn & Verity, 2007; Leslie, 2001; Levine-Madori, 2007 & 2011; Lokon, 2007 & 2011; McKernon, 1996; McFadden, 2005; Mell et al. 2000; Mottram, 2003; Sherratt, 2010; Stewart, 2004; Thomas, 1996 and Wood, 2002;). It was not until 2006, however, that Rusted, Sheppard and Waller (2006) published the results of the first and probably the only randomised controlled trial study on dementia-specific art therapy.

The data collection for this consideration of the literature began once again with searches on the biomedical research engines at PUBMED, CINAHL and Medline. The search engines were accessed and although in 2011 there were considerably more than eight core articles on NPI and the creative arts therapies, journal articles specifically relating to research studies on art activity and dementia are still very rare, as are studies on the relationship between art and dementia and wellbeing.

Art therapy set in a British context begins this consideration and is followed by the Rusted, Sheppard and Waller (2006) study.

76 Art therapy set in a British context

Putting art therapy and the Rusted, Shepherd and Waller‟s study into a British historical context, it must be remembered that from the mid 1940s, when professional artists began practicing art therapy in Britain, they did so as passive facilitators in a non-directive, and non-interventionist manner, whilst leaving whatever analysis of art there was to medical professionals (Case & Dalley, 1992). Waller (1988) informs us the art therapy discipline evolved naturally, and by the late 1970s, the British Minister of Health identified art therapy as “a wholly psychotherapeutic profession” within the National Health System (NHS) and art therapists began identifying themselves as “psychotherapists, albeit of a specialized kind”. The discipline and training of art therapists today is influenced by psychodynamic, psychotherapeutic theory and principles “especially [influenced by the] Winnicott and the British Object Relation School”. This school of thought sees art therapy not as “fun or recreation”, but as a “serious treatment involving the person and the therapist” (Waller, 2002).

Burns et al. (2005, p. 143) describepsychodynamic therapy as therapy that was formerly known as the “conversational model”. They write the “principal aim of psychodynamic therapy is the identification of interpersonal conflicts or difficulties, which are causing or helping to maintain emotional distress”. And, although Waller (2002) believes that art therapists in Britain see their role as an “antidote” to models of treatment within the biomedical framework, and no longer “supplementary to medicine” and doctors, they are nonetheless aligned with other professions “perceived primarily as scientific health care professionals” and are part of the Health Professions Council (Waller, 2002, pp. 1 & 24).

Rusted, Sheppard and Waller (2006) were the first to publish a randomized controlled trial on dementia-specific art therapy. They conducted the study in

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Britain over a ten-year period between 1995 and 2005. The research project trial, described as a “longitudinal, repeated measures, control group comparison”, was conducted in three phases, and in the context of residential day care (Rusted, Waller & Sheppard, 2006, p. 4). The project began with two, ten-week art therapy and control group pilot studies, followed by the main research project which was conducted over a nine-month trial period involving forty-five randomly chosen participants. For nine months, the control group participants were presented with a selection of unspecified “recreational activities”, but no “formal occupational therapeutic methods or any form of art and craft work” was included in the activities. Finally, the research data gathered from the twenty-one participants who completed the nine-month trial, and two follow-up interviews, was analysed and published.

The principle aim of the study was to “evaluate the immediate and long term effects of art therapy for older people with dementia, specifically to test the premise that participation in art therapy groups effects positive change in mood and cognition both immediately within sessions and later outside the session to impact behaviour”. The broader aim was to provide an evidence- based evaluation into the art psychotherapy process in dementia care through the “interactions between patient and artwork” using a variety of art materials (Rusted, Sheppard & Waller, 2006, pp. 517- 519).

As to the outcomes, the authors write that the use of art therapy “provided clear evidence of positive and durable benefits of aspects of mental alertness, sociability, physical and social engagement in clients with moderate and severe dementia. These changes were quantitatively and qualitatively different from patterns of effects achieved with a parallel program of recreational activity”, even though participant numbers were small and the authors admit that the standardized measures they used were “not sensitive enough to capture the changes reported by centre staff” (Rusted, Sheppard & Waller, 2006, pp. 531).

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Waller (2001, p. 61) describes the trial as gathering the “biggest database of its kind and certainly the only one with both visual and verbal material collected over nine months”. There was one clear positive outcome - Waller and Sheppard (2006) used their research findings to form the backbone of new industry guidelines for art therapists working in dementia-specific care in Britain.

A consideration of some of the dementia-specific art activity research studies published over the past decade, identified in Gottlieb-Tanaka and Graf‟s (2011) meta-analysis begins with three different projects undertaken by Seifert and her colleagues in Akron, OH, USA. Not all of the studies consulted by Gottlieb- Tanaka and Graf (2011) are included in this review given that they worked to a different performance criteria when they were gathering information for their study. A more pointed analysis of their work is addressed in the conclusion of this thesis. Others studies not identified by Gottlieb-Tanaka and Graf (2011) are included in this appreciation because they concentrate more on dementia- specific art activity and facilitation, the focus of this research project.

The first of Seifert‟s (2000) studies involved a nine-month longitudinal study assessment of the memory of a seventy-three year old woman, living with Alzheimer‟s like dementia, during the painting restoration of a family heirloom. The project involved the repainting and decorating of a base relief floral pattern on a small piece of furniture. The project granted the resident‟s wish to attempt the restoration activity and made it possible to “satisfy the resident‟s desire to improve the appearance of the heirloom”. The individual completed the restoration over a nine-week period and was interviewed on aspects of the project at five and then nine months later.

Seifert (2000, p. 66) was interested in whether a history of engagement in craft and art activity had “established an automaticity [sic] of sub-task procedures in a larger task” and/or if the resident would automatically remember the

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investigator and the steps of the activity between engagements. Seifert reports that the participant‟s choice of colours and her colour acuity remained constant and, although she „forgot‟ the floral pattern design she followed instructions, and the investigator worked in collaboration with her to apply colour, so that “the finished product was aesthetically pleasing”. At the follow up interviews the participant remembered the investigator and aspects of the project that had a particularly emotional connection, but she was not sure if the project was completed (Seifert, 2000, p. 72).

Seifert‟s observations are that some artistic skills may be automatic and may also add to the ability to “complete (and enjoy) many of the components of a task”. She is of the opinion that “customized activities may enrich and support one‟s level of cognitive functioning [and] afford valuable rapport-building opportunities for one-on-one interaction” (Seifert, 2000, p. 73).

In the second article, Seifert, Drennan and Baker (2001) discuss the outcomes of two art activities. In the first study, six untrained artists – three with dementia and three without dementia – and residents from an Ohio care facility participated in a pen-pal exchange with students from a Chicago middle school. All artists produced cards with coloured stickers on blank sheets of construction paper twice a week for ten weeks. Although the artists with dementia used “significantly more objects in their pictures than those without dementia” and created symmetrical pictures, the authors report the asymmetric complexity of the images decreased over the course of the study (Seifert, Drennan & Baker, 2001, p. 99). The authors did not comment on whether this was due to the decreasing novelty value of the activity or the progression of dementia.

In the second art activity, twenty-one individuals living with dementia, and five without, from four long-term facilities, “affixed floral stickers to a white page that already pictured a line drawing of a vase with stems” to create artworks to adorn the walls of their facility (Seifert, Drennan & Baker, 2001, p. 98). The

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authors observed that the line drawings worked well as cues with artists with more advanced dementia and as their dementia progressed. The artists nonetheless discussed design options and sticker placement during the artwork phase of the project and expressed joy and accomplishment in their handiwork. Seifert‟s third article in this review was written in conjunction with one of the same colleagues. Seifert and Baker‟s (2002) three-year longitudinal study of an art activity was undertaken to learn “about some of the benefits and limitations of art activities (for daily living and possible aids to assessment)” and to chart the stability and/or cognitive deterioration of the participants in the study over that time.

Twice a week, in what the authors describe as a fun filled two-hour session, participants were given a choice in the selection of a dozen colourful stickers to create a picture. Assessments were made of the asymmetrical placement of the stickers and the pictorial complexity of the image to determine working memory capacity and/or decline over the period. The authors observed that participants living with Alzheimer‟s like dementia took great care with the placement of the stickers and verbalized their thoughts during the picture‟s design and composition.

Seifert and Baker (2002) stress that to use art tasks as a diagnostic tool in this way the activity should be presented in a „standardized‟ manner with similar instructions and materials. The authors conclude that although the pictorial complexity of the pictures declined over the period of the study, it was unclear how the asymmetric placement changed and, in the end, it was “too difficult to draw conclusions about long-term changes in art production” based on this study.

Musha et al. (2000) document the positive effects of art therapy on forty-one Japanese patients. For one year Musha and his colleagues, using a new

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technique know as the Emotion Spectrum Analysis Method, analysed the electroencephalogram of patients fitted with electrodes as they used various materials to engage in a “wide range of creative arts”. The art therapy