Art Therapy Interventions for Dementia Patients: A Qualitative Study

Personal Vignette and Introduction

There are few phrases I dislike more than "It is what it is." People who use this phrase seem to be stating that whatever the concern, it is not worthy of thought — an under-mannered way of naturalizing the consequences of misguided choices. However, the fact that every choice, good or bad, has consequences is a truth that cannot be ignored. I know the frustration and anguish of rectifying the consequences of the horrific choices of others. I know because on October 24, 1998, I survived two violent crimes. In 2002, I was formally diagnosed with Post-Traumatic Stress Disorder with Suicidal Ideation and placed on Social Security Disability Income. Nine months after my diagnosis, I again survived two violent crimes and three additional traumatic life experiences. Every memory I had, good and bad, was muted into abstraction, and my ability to trust anyone was shattered.

I lived in a fear-based reality that included hyper-vigilance, sleep deprivation, flashbacks, panic attacks, and nightmares. My ability to communicate with others was crushed, as was my confidence and self-esteem. I believed that God was wishful thinking, that suicide was my best option, and that I wanted to die. With more hard work than I sometimes care to remember, I recovered. To do so, however, I was required to take responsibility for the actions of those who had hurt me. I chose to forgo traditional therapy and instead opted for the holistic path offered through art interventions, mindfulness, and meditation.

As part of my recovery, I created original artwork in every form of media available to me and readjusted my fear-based reality by embracing my ability to make positive choices. However, the term "choice" is a luxury absent from the daily lives of dementia patients. I know how strange and frightening their world has become, and I know the despair they feel but cannot voice. I am forever grateful for the many people who chose to help me help myself, and I am fortunate to have the opportunity to offer the same for others. Without hesitation, I have chosen to help dementia patients survive the symptoms of trauma by facilitating communication through art therapy processes. I am confident that employing art interventions as a vehicle for therapy and cognitive rehabilitation holds positive, limitless outcomes for dementia patients and their caregivers.

Topic, Purpose, and Significance

Most types of dementia are neurodegenerative conditions for which there are no treatments capable of halting, let alone reversing, disease progression (Simpson, 2014; Chancellor, Duncan, & Chatterjee, 2014). According to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the defining features of dementia are at least two distinct cognitive deficits affecting memory and at least one of the following impairments: (1) language (aphasia), (2) motor movement (apraxia), (3) object and facial recognition (agnosia), and (4) planning, organizing, prioritizing, and abstract reasoning (executive functions) (Christensen & White, 2006). The difference between mere forgetfulness and clinical dementia is that the latter interferes with the individual's ability to live an independent life. DSM-5, the most recent version, divides dementia and other neurodegenerative disorders into two main classifications: mild and major neurocognitive disorders (NCDs) (Simpson, 2014). All types of dementia are included in the major NCD classification.

A definitive cause of dementia remains unknown, but defects in protein folding — which contribute to the formation of neurotoxic beta-amyloid plaques — has become one of the primary theories used to explain the loss of brain neurons (Riverol & Lopez, 2011). Other types of dementia include vascular, Lewy body, and frontotemporal dementias, in that order from common to rare (Christensen & White, 2006).

In addition to the sometimes severe symptoms, the stigma associated with being diagnosed with dementia can have profound consequences (Milne, 2010). The patient not only has to cope with cognitive decline and memory loss, but also with being defined by the "dementia" label. Beyond a lower quality of life (QOL), patients face increased vulnerability, reduced independence, loss of social roles and identity, lower self-esteem, and diminished social value. Patients diagnosed with dementia tend to experience social exclusion and isolation, not only in the communities where they reside but also within the healthcare system. Milne (2010) described the "double-whammy" that most dementia patients experience, which involves discrimination due to advanced age and a mental illness diagnosis. The dementia label has also been observed to result in what researchers call "excess disability," implying that residual cognitive and psychological functional capacity are ignored and the activities available to dementia patients — whether at home or in a formal care setting — are too simplistic to be engaging (MacPherson, Bird, Anderson, Davis, & Blair, 2009). High-quality dementia care should therefore strive to preserve cognitive abilities, lower the frequency and severity of adverse events, improve health, eliminate threats to safety, increase the health and well-being of family caregivers, and improve the social environment inhabited by the patient (Odenheimer et al., 2013).

In the absence of effective medical interventions capable of slowing, halting, or improving the symptoms of dementia, there is a great need for non-medical interventions that can make a significant difference in the lives of patients and the people who care for them. One intervention gaining wide acceptance is patient engagement in creative activities, which has generated countless reports of positive outcomes for both patients and caregivers (Chancellor, Duncan, & Chatterjee, 2014; Kinney & Rentz, 2005; Rusted, Sheppard, & Waller, 2006; Stallings, 2010; Hattori, Hattori, Hokao, Mizushima, & Mase, 2011; Ferrero-Arias et al., 2011; Peisah, Lawrence, & Reutens, 2011; Mimica & Kalinkic, 2011). For example, Ruth is an art therapist who enjoys connecting with the intact parts of a patient's mind and watching them blossom (Alzheimer's Association, 2014a). When her own mother was diagnosed with Alzheimer's disease (AD), she was struck by how uninhibited and uncritical her mother had become toward her own drawings — a stark contrast to a pre-AD habit of unforgiving self-criticism. Observations like these are becoming more common, and art activities are increasingly recognized as effective interventions for moderating the symptoms of dementia (Alzheimer's Association, n.d.). There have also been reports of accomplished artists producing remarkable works for years after receiving an AD diagnosis and using art to enhance remembrances of the past (Chancellor, Duncan, & Chatterjee, 2014).

The findings of a limited number of quantitative studies generally support the use of art intervention for improving patient QOL, but little is known about the subjective experience of the patient, caregivers, and art therapists — information that Ullman (2005) believed to be necessary for improving the provision of care. The purpose of this study is to provide insight into stakeholder experience during the provision of art therapy to patients suffering from mild to moderate dementia.

Significance

In 2013, an estimated 5.2 million Americans suffered from Alzheimer's disease (AD), which represented between 60 and 80% of all diagnosed cases of dementia (Alzheimer's Association, 2013). Close to 5 million were over the age of 65, a fact that highlights age as a major dementia risk factor. Accordingly, the prevalence of this disease increases to 44% for individuals who surpass 75 years of age. Most of the care provided to dementia patients comes from informal caregivers — such as family members and friends — who in 2013 contributed nearly 17.7 billion hours of unpaid care with an estimated value of $220.2 billion (Alzheimer's Association, 2014b). This amount is approximately equal to the total amount spent on direct medical care annually for dementia ($214 billion). Unfortunately, the stress associated with caring for loved ones with dementia can be substantial, resulting in an additional $9.3 billion in direct medical care expenses annually. In light of the lack of effective medical treatments or promising cures, and the growing burden of dementia care on society and families, any intervention that can improve patient QOL would represent an important contribution. Currently, art therapy represents one of the more promising interventions available (Chancellor, Duncan, & Chatterjee, 2014) and therefore deserves the attention of researchers.

In the State of Utah, an estimated 32,000 individuals suffered from AD in 2010 (Alzheimer's Association, 2013). This is a relatively small number compared to the rest of the country, but current projections suggest that the number of Utah residents suffering from dementia will more than double by 2025 (a 127% increase). A word search for "dementia" on the Utah Museum of Fine Arts website retrieved no results. A similar search on Google created the impression that art and creative activities have not found their way into Utah dementia care, although the Utah chapter of the Alzheimer's Association is aware of the potential health benefits associated with art exposure (Jarvik, 2006). One sign that progress is being made comes from an initiative to implement the Music & Memory Initiative into Utah residential treatment facilities caring for dementia patients (Sneed, 2014), but much more needs to be done to optimize art exposure and its benefits for this patient population.

Framework and General Research Questions

Kolb's Experiential Learning Theory serves as the framework used for understanding the meaning dementia patients may assign to the art process. According to Kolb's (1984) theory, patients able to assign meaning would be transitioning through four sequential steps in learning: (1) concrete experience, (2) reflective observation, (3) abstract conceptualization, and (4) active experimentation (p. 21). Should a patient spend more time in one of these steps compared to the others, it may reflect a learning style preference (Turesky, 2005). The purpose of developing a theoretical framework for understanding the art process is to craft individualized art therapy approaches informed by learning style preferences. Communication and personal fulfillment directly link the conceptual paradigms of Bruner's (2004) and Kolb's (1984) theories, because both assume the construction of a narrative in the mind of the patient. If communication and fulfillment become evident, this would suggest that the ability to assign meaning to events remains intact in these patients.

Given the language difficulties often experienced by dementia patients, kinesthetic and embodied learning adds depth to the intellectual framework. Kinesthetic learning depends on the physical experience of the learning process, so the senses, motor movement, and real-life application will be important dimensions for understanding the art process (Dunn, 2009). Similarly, embodied learning depends on the physical experience in addition to the cognitive, emotional, and social experience (Kerka, 2002). Mottram (2003) acknowledged the value of art activities as diversionary and calming, yet believed the term "art therapy" has more to do with how dementia patients communicate with the world. Chancellor and colleagues (2014) conceded that the process of art therapy focuses on the remaining cognitive and psychological abilities of the patient by encouraging their utilization; therefore, art therapy is patient-centered. Consequently, the terms "art therapy" and "art process," for the purposes of this study, will be aligned with the perspectives of Chancellor et al. (2014) and Mottram (2003).

The main research questions addressed by the proposed study are: (1) What are the experiences of dementia patients exposed to the art process? and (2) What are the experiences of the art therapist during the provision of art therapy to dementia patients? Chancellor et al. (2014) offer a theoretical framework for providing art therapy to dementia patients consisting of (1) preserved abilities, (2) a vehicle for emotional expression, and (3) a process capable of creating a state of flow and thus a sense of well-being. This framework will be tested during the proposed study by looking for these themes in the data during reflexive activities.

Limitations

Although numerous theories of learning were discussed above, the proposed study, due to its qualitative nature, cannot provide support for or undermine these theories, since qualitative studies tend to be theory-generating rather than theory-confirming. Nothing will be measured or quantified, such as patient and caregiver QOL; therefore, any claims of efficacy will be based solely on subjective rather than objective data. In addition, the very small sample size will preclude making a claim of generalizability to dementia patients in general, as well as to settings other than the one planned for this study. Any claims of credibility, as Golafshani (2003) notes, will depend on researcher skill and effort. The variables that may limit credibility include the researcher's lack of expertise in dementia care and in conducting qualitative research. This shortcoming will be addressed to some extent by establishing rapport with clinicians involved in dementia care and by examining the research literature.

Researcher's Statement

I am a nontraditional graduate student in a Master in Education program, pursuing certification as an Adult Arts Educator. I am an academically trained visual artist with expertise in ceramics, sculpture, drawing, two- and three-dimensional multimedia, non-digital photography, and graphic design. My academic preparation includes certification for primary and secondary arts education. Professionally, I am engaged as a teaching artist in the field of Creative Aging and facilitate the cognitive rehabilitation of individuals suffering from dementia. Accordingly, I am both academically and professionally prepared to pursue this research project.