Art Therapy Interventions for Dementia Patients: A Qualitative Study

Introduction and Personal Vignette

There are few phrases I dislike more than "It is what it is." People who use this phrase seem to be saying that whatever the concern, it is not worthy of thought — an under-mannered way of naturalizing the consequences of misguided choices. 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 others' horrific choices. 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 hypervigilance, sleep deprivation, flashbacks, panic attacks, and nightmares. My ability to communicate with others was crushed, as was my confidence and self-esteem. I believed suicide was my best option and that I wanted to die. With more hard work than I sometimes care to remember, I recovered — but to do so, I was required to take responsibility for the actions of those who 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 to others. Without hesitation, I have chosen to help dementia patients survive the symptoms of trauma by facilitating communication through the art therapy process. 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.

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 dementia, Lewy body dementia, and frontotemporal dementia, listed here from most to least common (Christensen & White, 2006).

In addition to sometimes severe symptoms, the stigma associated with a dementia diagnosis can have profound consequences (Milne, 2010). The patient must cope not only with cognitive decline and memory loss, but also with being defined by the "dementia" label. Beyond the lower quality of life (QOL), 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" most dementia patients experience, which involves discrimination based on both 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 that activities available to dementia patients — whether at home or in formal care — 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 well-being of family caregivers, and improve the patient's social environment (Odenheimer et al., 2013).

In the absence of effective medical interventions capable of slowing, halting, or improving dementia symptoms, there is a great need for non-medical interventions that can make a significant difference in the lives of patients and those 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 dementia symptoms (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 interventions for improving patient QOL, but little is known about the subjective experience of patients, caregivers, and art therapists — which 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.

In 2013, an estimated 5.2 million Americans suffered from Alzheimer's disease, which represented between 60 and 80 percent 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. The prevalence of this disease increases to 44 percent for individuals who surpass 75 years of age. Most 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.

Dementia Care: Quality, Limitations, and Societal Roles

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, and 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 of progress, however, 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.

The Kolb Experiential Learning Theory will serve as the framework 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 than 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, in particular, directly link the conceptual paradigms of Bruner (2004) and Kolb (1984), 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 add depth to the intellectual framework. These conceptual paradigms — associated with Bruner's (2004) and Kolb's (1984) learning theories — will be employed in this study's methodology. 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. For the purposes of this study, the terms "art therapy" and "art process" 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 built around three elements: (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.

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 — and 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 claims of generalizability to dementia patients in general, or 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. Variables that may limit credibility include my 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.

I am a nontraditional graduate student in the 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, to a limited extent, graphic design. My academic preparation includes certification for primary and secondary arts education in the State of Utah. 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.

Current treatment strategies are designed to improve QOL for dementia patients and their caregivers; however, there are systemic problems with the care patients typically receive. For example, a concerned family member revealed some of the problems associated with the quality of dementia care provided in contemporary healthcare facilities (Armstrong & Byrne, 2011, p. 13). The family's mother, who was 66 years old, was diagnosed with AD and had been managing well at home, but after being admitted to a hospital for a perforated ulcer, the patient died within three months. The family became convinced that the AD diagnosis conferred second-class patient status, which gave staff permission to wash the patient with curtains open, leave her sitting in feces during family visits, remain indifferent to her need for feeding assistance, and keep family members uninformed about treatment plans. The family ultimately concluded that their loved one had been starved to death.

This report seems to confirm the existence of discrimination based on a dementia diagnosis, particularly within the healthcare system. Given the widespread acknowledgment that the care provided is suboptimal, standards of dementia care were recently issued by a working group consisting of representatives from the American Academy of Neurology, American Geriatrics Society, American Medical Directors Association, American Psychiatric Association, and the American Medical Association (Odenheimer et al., 2013). Topping the list is maximal preservation of the patient's cognitive and functional abilities. Other standards include reduced symptom severity and frequency, preservation of general health, minimized threats to patient safety, and comprehensive support for family caregivers. Quality dementia care would therefore be expected to address the cognitive, psychological, and behavioral problems associated with the disease.

Art Interventions: Qualitative and Quantitative Evidence

The available pharmacological interventions are extremely limited in both number and efficacy. According to American Family Physician, all three categories of dementia symptoms have been shown to be responsive to acetylcholinesterase inhibitors (AChEI), although the benefits appear marginal (Butler & Radhakrishnan, 2014). Antipsychotic medications are no longer recommended due to substantial side effects and safety concerns. Other interventions that have been tried include antidepressants, talk therapy, exercise, statins, fish oil, and cognitive stimulation activities such as music therapy, but rigorous empirical evidence supporting their use is lacking.

Society plays a significant role in how dementia patients are perceived and treated, both inside and outside the healthcare system (Milne, 2010; Odenheimer et al., 2013). One solution receiving international attention is increased patient and caregiver exposure to art activities. The National Gallery of Australia in Canberra welcomes dementia sufferers and their professional and family caregivers once a week as part of a program designed to compensate for the social isolation and stigma surrounding the disease (Dyett, 2014). Anecdotally, caregivers reported that anxiety levels caused by cognitive impairment seem to be reduced, which may explain why this program has survived for seven years. This track record is consistent with apparent increases in well-being experienced by dementia patients and, by extension, family and professional caregivers.

More recently, a pilot program with similar goals was implemented in London, England (Gould, 2012). The London Arts Challenge organizes weekly art workshops at numerous venues around the city for patients in the early stages of the disease, along with their family caregivers. The goals are to reduce stress associated with memory loss and provide a fulfilling sense of connection to the community. At the Museum of Modern Art in New York City, the education department created the MoMA Alzheimer's Project in 2007 to provide training resources for professionals interested in exposing dementia patients and caregivers to art, and to offer on-site art education programs. The MoMA's Alzheimer's Initiative has helped similar programs come to life in at least 60 other museums (Chancellor, Duncan, & Chatterjee, 2014). Many of these programs are based on art appreciation, but more than a few have incorporated creative activities into their dementia outreach efforts.

Mottram (2008) acknowledged the value of art activities as diversionary and calming, yet believed the terms "art therapy" and "art process" have more to do with dementia patients communicating with the world. She suggested that any intervention that improves patient cognition and moderates neuropsychiatric symptoms would substantially improve patient and caregiver QOL, and that a more holistic and potentially enjoyable dementia care intervention is art therapy, which emphasizes remaining cognitive abilities. This perspective is echoed by those who agree that cognitive rehabilitation for dementia patients has been shown to provide measurable benefits, in isolation or in combination with AChEIs (Carrion & Lopez-Bemejo, 2013; Clare et al., 2010; Giordano et al., 2010). Chancellor and colleagues (2014) agreed and suggested that dementia patients are helped in three important ways by the art therapy process: (1) use of intact cognitive capabilities, (2) facilitation of emotional communication, and (3) the creation of an opportunity for prolonged concentration and personal fulfillment.

Recommended activities can be as simple as coloring line drawings with crayons or watercolors for patients with mild dementia (Hattori, Hattori, Hakao, Mizushima, & Mase, 2011), or as adapted as coloring and shading cut felt shapes for patients with severe dementia (Peisah, Lawrence, & Reutens, 2011). Reduced apathy and increased calmness were among the more prominent outcomes noted by researchers. Many in the field agree that patients with severe dementia may require one-on-one instruction, non-verbal instruction, and frequent eye contact to encourage participation in the prescribed activity (Carrion & Lopez-Bemejo, 2013; Chancellor et al., 2014; Clare et al., 2010; Giordano et al., 2010; Mottram, 2014). If an improved social environment contributes to the health and well-being of patients and caregivers, then art interventions may have the potential to delay transitions to residential care facilities. The medium employed during art therapy is less relevant than the quality of the interaction between patient and therapist, because the patient is suffering not only from an organic disease but also from psychologically debilitating social isolation (Waller, 2002a, p. 2). The quiet and supportive atmosphere created in the art studio has the potential to help many patients regain a modicum of purpose, value, and control over their lives, in addition to creating a medium for communicating with others.

Qualitative study designs cannot provide empirical support generalizable to the wider patient population, but evaluating individual patient responses to an intervention can provide detailed insights unavailable through quantitative designs. For example, an 82-year-old woman suffering from severe dementia presented with persistent agitated behavior unresponsive to pharmacological interventions (Peisah, Lawrence, & Reutens, 2011). Nothing seemed to work — not doll therapy, distracting activities, or exercise. When evaluated, the patient was judged to have strong visual-spatial perceptual and manual dexterity skills, including recognition of colors and shapes. Based on these strengths, the art therapist used colored shapes cut from felt and modified with lines to encourage shading and coloring. The observed benefits were a calm demeanor during the art process and a positive social attitude at the end of each session. The patient, formal caregivers, and family universally welcomed the intervention.

Similar benefits were observed for patients in Kansas (Stallings, 2010) and Croatia (Mimica & Kalinkic, 2011), who engaged in creating collages from precut magazine images and pencil drawings, respectively. Benefits observed included reminiscing about the past, effective reduction in behavioral problems without drugs, and in one case the creation of truly remarkable drawings by a patient with no history of art expertise. A mixed-method analysis of patient and caregiver experiences while attending MoMA Alzheimer's Project activities was recently completed (Camic, Tischler, & Pearman, 2014). Quantitative measures of caregiver burden, activities of daily living, and QOL failed to reach significance for a small sample (N = 12) of patient/caregiver pairs; however, thematic analysis of interview data revealed three themes and 12 categories. The theoretical framework employed was a constructionist museum model, which assumes a co-constructed learning experience made possible when the impact of cognitive impairments is minimized by family caregiver co-participation. Patients suffering from mild to moderate dementia reported feeling more socially included, having improved cognitive function, and experiencing an enhanced quality of life. All patient/caregiver pairs reported enjoying the program, regardless of whether they attended at a museum or a contemporary art gallery setting.

The Memories in the Making intervention, first developed in Orange County, California, was adapted for use in multiple adult daycare centers in the Greater Cincinnati area (Rentz, 2002). A formal evaluation of the program's efficacy was undermined by the lack of a control group; however, patients were observed to have sustained attention and pleasurable experiences during art therapy sessions (Kinney & Rentz, 2005). The theoretical framework for evaluating the benefits of the intervention was Lawton's definition of well-being, based on the interaction between an individual and environment. Factors assessed included engagement in the task, expressions of pleasure, displays of self-esteem, and emotional expressivity. A follow-up study incorporating a cross-over control condition and a 19-item validated instrument (Greater Cincinnati Chapter Well-Being Observation Tool) revealed significant (p < .03) benefits of art therapy in terms of interest, sustained attention, pleasure, self-esteem, and feelings of normalcy (Kinney & Rentz, 2005).

A more rigorous study design was used to evaluate the long-term efficacy of art therapy among patients suffering from dementia (Rusted, Sheppard, & Waller, 2006). The intervention lasted 40 weeks, with follow-up evaluations conducted one and three months post-intervention. Forty-five patients attending adult daycare or residential facilities were randomly assigned to weekly art therapy sessions or non-art, non-craft activities, creating a true control group. Due to attrition, however, only 21 participants were able to complete the nine-month study, which undermined the benefits of randomization. Despite this limitation, significant (p < .01) improvements in mental acuity, calmness, physical involvement, and sociability were found for the art therapy group, while these measures worsened for controls. The only negative effect of the art therapy intervention was a doubling of the depression score after the last session; otherwise, depression scores trended toward improvement during the intervention. The authors concluded that art therapy provided more durable benefits than the control interventions.

These studies revealed a consistent pattern of beneficial effects attributable to art therapy, though the variables reaching statistical significance varied considerably across studies. Some of this variability may be due to differences in study design, sample size, and measurement instruments, in addition to variation in the cognitive and behavioral symptom mix within each patient sample. Overall, patients with mild to moderate dementia benefit most from art therapy, with benefits including greater momentary QOL, improved mood, and reduced behavioral symptoms. Researchers have also studied music as a treatment for dementia symptoms, but a recent literature review found insufficient evidence to support its clinical use (Butler & Radhakrishnan, 2014). A few researchers have studied dance, but the universality of this intervention is limited primarily by the physical and psychomotor limitations common among dementia patients (Guzman-Garcia, Mukaetova-Ladinska, & James, 2013).

Waller's (2002b) interview of Kamal Beeharee, a community psychiatric nurse with extensive experience working with dementia patients, provides a perspective consistent with the most important dementia care standard: preservation of a patient's cognitive abilities (Odenheimer et al., 2013). This perspective is nuanced in important ways. The preservation of cognitive abilities necessarily implies deficits, but these deficits can vary widely among the patient population. Beeharee suggests that interventions designed to improve the cognitive and psychological state of dementia patients must strive to improve cognitive impairments while simultaneously preserving and strengthening the abilities that remain relatively intact (Waller, 2002b, p. 139). According to Beeharee, when dementia patients are given an opportunity to display their cognitive strengths, this will have a direct positive impact on their mood and self-esteem, because the anger, frustration, and behavioral symptoms common to dementia sufferers are fueled by feelings of social isolation and devaluation. This perspective was echoed by Edwards (2004, pp. 43–44), who noted that cognitively normal people react the same way to social isolation; however, cognitively normal people can suppress these feelings, while dementia patients lacking executive control do not have this option. Combined with verbal language impairments, the emotional and behavioral problems common to dementia patients begin to make intuitive sense.