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Art in Alzheimer’s Care: Promoting Well-Being in People with Late-Stage Alzheimer’s Disease
The purpose of this qualitative study was to explore the responses of people with late-stage Alzheimer’s disease (AD) to a creative bonding intervention (CBI). The CBI consisted of simple art activities. Guided by Reed’s self-transcendence theory, research questions were “Will persons with late-stage AD show evidence of self-transcendence during the CBI?” and “Will persons with late-stage AD show evidence of well-being during the CBI?” Twelve CBI sessions, documented by videotape and field notes, were conducted with four participants. Themes emerged within two clusters: trusting/thirsting/following and choosing/connecting/reminiscing. An overarching category of “cocooning” described participants’ world during the CBI as they displayed evidence of self-transcendence and well-being. The CBI is a strategy that can be implemented by staff, families, and volunteers. Nurses are positioned to provide transformation leadership for implementation of creative approaches during care of people with late-stage AD, but administrative and financial support are needed.
Alzheimer’s disease (AD) affects approximately 5.2 million people in the United States (About Alzheimer’s Disease, 2011). For those older than age 65, the prevalence doubles every 5 years; for people older than age 85, prevalence is 1 in 2 (Werner, 2007). The care required as the result of progressive mental and physical dependency of people with AD leads families to place their loved ones in long-term care facilities (Werner). Family despair that ensues after residential care placement has been illuminated in movies such as Away from Her and The Notebook (About.com, 2009). Family members continue to search for new strategies to offer any glimpse of well-being to their loved ones (Gitlin, Liebman, & Winter, 2003; Kornblum, 2007). Creative art approaches may give rehabilitation nurses new strategies to communicate with the people with AD and their family members.
The use of the arts to promote well-being in people with AD has increased across disciplines such as nursing (Bober, McLellen, McBee, & Westreich, 2002; Brandburg, 2007; Doherty, Wright, Aveyard, & Sykes, 2006; Perrin, 1997). Basting (2003, 2006), a theater arts professor, defined art approaches as “any medium used for creative expression.” (Basting, 2006, p. 16). Kolanowski and Buettner (2008) reported residents’ well-being and staff satisfaction increased with individualized interventions that included nursing and recreational therapy. Others have reported advantages of music (Siedliecki & Good, 2006), music and hand massage (Remington, 2002), therapeutic touch (Doherty et al., 2006), tender touch (Sansone & Schmitt, 2000), and caregiver singing (Gotell, Brown, & Ekman, 2002). Wood, Harris, Snider, and Patchel (2005) described residential environments and observed that residents displayed well-being when using or holding musical instruments; surprisingly, they concluded that beautifully decorated environments had no effect on residents. Even when multiple strategies are used to promote well-being in those with AD, researchers continue to suggest that additional approaches are needed (Basting, 2003, 2006; Brandburg; Song, & Algase, 2008).
In the present study, a creative bonding intervention (CBI) was used to promote well-being in people with late-stage AD. The CBI was modeled after art activity approaches previously used (Walsh, Chang, Schmidt, & Yoepp, 2005; Walsh, Radcliffe, Castillo, Kumar, & Broschard, 2007). For the present study, the CBI was refined based on art-intervention studies to promote self-transcendence during student-elder interactions (Chen & Walsh, 2009; Walsh, Chen, Hacker, & Broschard, 2008).
Reed’s self-transcendence theory (Reed, 2008) has three major concepts: vulnerability, self-transcendence, and well-being (Figure 1). Reed defined self-transcendence as an innate characteristic with four dimensions: (1) intrapersonal self-transcendence or the expansion of wholeness within oneself; (2) interpersonal self-transcendence or the connection between self, others, and the environment; (3) temporal self-transcendence or the integration of the present, past, and future; and (4) transpersonal self-transcendence or the connection between self and something greater than self (e.g., spirituality; Reed). Reed suggested that art activities might have a positive effect on self-transcendence and well-being.
Reed (2008) discussed well-being as a subjective feeling and proposed that self-transcendence is a correlate or predictor of well-being (Figure 1). Orem (2001) defined well-being as the presence of subjective experiences as contentment, pleasure, and happiness. Perrin (1997) noted that well-being occurs during leisure activities. The purpose of this qualitative study was to explore the responses of people with late-stage AD to CBI art activities. Research questions were “Will persons with late-stage AD show evidence of self-transcendence during the CBI?” and “Will persons with late-stage AD show evidence of well-being during the CBI?”
Design, Sample, and Recruitment
The study used a qualitative, exploratory design. Qualitative methods give meaning to covert and unknown phenomena (Leininger, 2002). A qualitative approach is expected to generate knowledge through the eyes of researchers in collaboration with vulnerable research participants (Liamputtong, 2007).
People with late-stage AD were recruited from a secure 24-bed unit in a residential care facility in a metropolitan area of the Southeastern United States. All residents on this unit had a medical diagnosis of dementia according to Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV TR) criteria, a Mini-Mental State Examination score lower than 24, and information obtained from a legal guardian (Ruth Wells, personal communication, January, 2007). Staff identified potential subjects who met inclusion criteria for the study; criteria included the ability to communicate in English, follow simple directions, and use both hands. Demographic data (age, length of time in facility) were obtained from participants’ guardians. Researchers agreed a priori to not collect additional demographic or healthcare data to remove researcher bias about how residents might respond to the CBI.
Ethics approval was obtained from a university and the residential facility. Guardians signed consents before residents were invited to join the study. Residents’ verbal consents, documented by videotape and field notes, were obtained before each CBI session.
The CBI Protocol
All CBI sessions were individual (1:1) 30-minute sessions involving a participant and an interventionist (INT). The first CBI session began with monoprint cards—the easiest, most popular activity (Walsh et al., 2007). The second session consisted of a more complex ribbon-gem activity (Walsh & Weiss, 2003), and the third session ended with the creation of a more difficult self-image portrait that included use of a Polaroid head shot of the participant (Walsh et al., 2005; Table 1). CBI activities were not considered art therapy (Nainis, Paice, Ratner, Wirth, Lai, & Shott, 2006), but served as a user-friendly bridge to promote engagement.
In keeping with Reed’s theory (2008), which incorporates Frankl’s (1984) concept about “freedom to choose,” participants were given opportunities to make choices throughout the CBI. For example, during the first session the INT suggested, “From these paints, choose several of your favorite colors.” During the second session, the INT said, “From these silhouettes (e.g., animals, flowers, boats, musical instruments), what are some of your favorite things?” During the third session, the INT asked, “Can you choose a ‘body’ from this workbook that shows what type of work or activity you like?”
The CBI, conducted weekly for 3 weeks, was implemented during 30-minute sessions. The time allotted was based on previous work with elders (Kolanowski & Buettner, 2008; Walsh et al., 2008). Resident responses were collected by researchers’ field notes and observation, participant observation by the INT, and videotapes. The researcher who devised and refined the CBI was the INT throughout the study. Sessions were completed in a conference room near residents’ rooms, occurred during mid morning, and were videotaped per guardian consent. To begin, the INT introduced those present, explained the purpose of the research, reported the guardian’s permission, pointed out the camera, and explained the right of the resident to refuse. If the resident agreed, the resident and INT proceeded to an art activity table.
Researchers conducted a hermeneutic, phenomenological content analysis of videotaped sessions and field notes based on data analysis of videotapes used by Gotell and colleagues (2002). Hermeneutical phenomenological research is well suited to explore quality-of-life issues (Pope & Mays, 2006). Van der Zalm and Bergum (2007) wrote that revealing the nature of human experiences through hermeneutic phenomenology provides knowledge for nursing practice. Hermeneutic analysis moves forward and backward and never is considered final nor closed (Allen & Jenson, 1990; Lindholm, Uden, & Rastam, 1999).
Videotapes were analyzed regarding the three steps of hermeneutical inquiry: naïve observation, structural analysis, and interpretation of the whole (Speziale & Carpenter, 2007). Naïve observation occurred during repeated viewings of videotapes to obtain an overall picture of sessions. Even though this first step is titled “naïve observation,” the initial research team’s views were biased because the researchers had videotaped and observed all sessions. To control for bias, two of the authors joined the study team after sessions had occurred. Also, select graduate students viewed videotapes and recorded their “naïve” observations.
Structural analysis, the second step, was completed during additional review of segments and entire sessions. Researchers looked for behaviors that transpired between INTs and residents that indicated presence of interpersonal self-transcendence, temporal self-transcendence, and well-being. Verbal and nonverbal responses were noted and themes were considered. For example, behaviors such as maintaining eye contact, following instructions, commenting about the activity, and answering questions were viewed as evidence of interpersonal self-transcendence. Researchers noted whether residents linked an activity with the past, present, or future (e.g., remembering that a favorite color during childhood was blue). Such reminiscence was viewed as temporal self-transcendence.
Evidence of well-being was recorded when residents smiled, showed affection to the INT, laughed, or expressed enjoyment (Orem, 2001; Perrin, 1997; Reed, 2008). Researchers also included talking, singing, creating, and joking as evidence of well-being. Themes were considered and reduced in number until consensus of six themes, collapsed into two clusters, was reached among eight researchers. During the third and final step, interpretation of the whole (the totality of all sessions) was reviewed and an overarching category was identified.
To promote rigor and trustworthiness of study findings, researchers addressed credibility, dependability, confirmability, and transferability (Speziale & Carpenter, 2007). Credibility and content dependability were promoted by researchers’ prolonged immersion during live sessions and repeated reviews of the videotaped sessions and field notes. Confirmability was strengthened by data analysis by two peers, both skilled gerontologist clinicians and teachers, who became coresearchers in the study after data collection had occurred. Results were confirmed during group and dyad videotape review that included discussion, comparison of videotapes with field notes, and researchers’ memories of events. When analysis was complete, transferability was evaluated.
Four residents, three women and one man with late-stage AD, completed three CBI sessions for a total of 12 sessions. One resident walked unassisted to the sessions, one walked with a walker, and two arrived in wheelchairs. Participants had lived at the same site for 1–2 years. Ages ranged between 88 and 96 years. Three participants were videotaped; one participant’s family did not give permission for videotaping. Field notes were taken during this participant’s sessions.
Six themes emerged during structural analysis of the CBI sessions: trusting, thirsting, following, connecting, choosing, and reminiscing. Themes were intertwined and consistently appeared together; researchers collapsed the six themes into two clusters. Clusters are illustrated in the following excerpts. Pseudonyms were used to protect participant identity.
Three themes, evident when the INT met each resident, continued throughout the three sessions as illustrated in the vulnerability ellipse in Figure 2. Immediately after residents met the INT, they began to stare at her face as though they were thirsting for her presence. Trusting seemed apparent when residents agreed immediately to participate and did not hesitate to follow the INT to the art activity table. They attempted to follow directions throughout. Residents who exhibited the thirsting/trusting/following cluster appeared trancelike, as if mesmerized by the INT. They continued to stare at the INT, hanging on every word or movement. The INT described the situation, “It’s like when a pet wants food—the residents seemed to be thirsting for contact.” Residents seldom diverted their gaze from the INT, looking at the CBI activity only when the INT asked them to do so, when she held up a piece of paper in front of them, or when she placed the resident’s hand on an object. This “thirsting” behavior was confirmed when another researcher joined a final session to sing the participant’s favorite song. The participant began to stare (thirst) after the new INT.
The thirsting/trusting/following cluster was associated with an unexpected outcome during a session when a participant, Barbara, began to cough. Barbara received cough medicine, but did not experience relief. Yet Barbara continued to follow. She frequently patted the INT’s hand, smiled, and attempted to complete the activity. When the INT stopped the CBI, Barbara agreed she should not continue. Suddenly, Barbara kissed the INT’s hand. This kiss provided evidence of the presence of interpersonal self-transcendence between the resident and the INT.
This cluster is depicted in Figure 2 in the self-transcendence ellipse as evidence of interpersonal or temporal self-transcendence. Although researchers were unsure whether residents could make choices (Frankl, 1984; Reed, 2008), residents did make choices and connected choices during reminiscences (temporal self-transcendence). Residents clearly stated likes and dislikes to the INT (interpersonal self-transcendence). By choosing/connecting/reminiscing, residents provided evidence that the CBI activities expanded interpersonal and temporal self-transcendence. To illustrate, the following conversation took place during a ribbon-gem session with Barbara:
INT: “I want you to choose several images (silhouettes) from these stencils. What about cats? Do you like cats?”
Barbara: Shaking head no, frowning.
INT: “Okay. What about musical symbols—a note, treble clefs? Do you like music?”
Barbara: “No, not really.”
INT: “Okay. Fine. Let’s see, what about butterflies?”
Barbara: Eyes light up. She says, “Yes, okay.”
INT: “Good. You said you used to be a milliner—a hat maker?”
Barbara: “Yes, a milliner!” [pride, emphasis on milliner in voice]
INT: “What about this hat with a wide brim?
Barbara: Smiled, saying, “Yes.” Barbara chose other images she liked and chose the color of a ribbon to complete the ribbon gem.
During a ribbon gem session when another subject, Frank, chose silhouettes of a girl and boy, he reminisced: “I used to be a photographer—took photos in Atlantic City on the Boardwalk.” Participant Dora also reminisced when choosing colors for a monoprint: “I like that color, cerulean blue—reminds me of my best friend Celine. I made friends with her after my family and I came to America on a boat.” Dora reminisced as she completed her self-portrait, “I have always worn a hat outside—to protect my skin from the sun, you know.”
Resident well-being was illustrated by specific behaviors according to Perrin’s (1997) description of engagement activities. The well-being behaviors are illustrated in the well-being ellipse in Figure 2. As Reed (2008) suggested, well-being may be an outcome if vulnerable people can experience self-transcendence. Behaviors that illustrated well-being occurred when residents displayed brief moments of laughing, talking, creating, smiling, joking, touching, and singing during sessions.
The final session for Edna, the fourth participant, offered a surprising view of her well-being. After Edna created a self-portrait depicting herself as a ballerina in a rainbow-colored tutu, she reminisced that she loved to sing and that her favorite song was “Somewhere Over the Rainbow.” Her last session, delayed for 1 month due to her physical infirmity, ended on a high note when Edna, the INT, and another researcher sang Edna’s favorite song. Edna sang loudly, remembered the lyrics, and held a researcher’s hand. Astonished staff expressed disbelief when they heard Edna, who had not spoken for a month, singing with gusto.
Interpretation of the Whole
After 1 year of data analysis, the totality or “holistic” view of sessions was considered, and an overarching category of “cocooning” emerged. Researchers reached consensus that “cocooning” described the environment in which the residents appeared to live. Researchers assumed the interactions between residents and INTs were within the cocoon of the residents’ making. For example, residents looked at the environment only when directed to do so by the INT; they were oblivious to noise, other researchers, people coming and going, and to videotaping.
Researchers were surprised by findings regarding their personal reflections about the project. They acquired new enthusiasm for the CBI and for interest in people with AD. Initially, negative biases were acknowledged (i.e., discomfort with elders, fear of AD, or little enthusiasm for art activities). However, after immersion in data from repeated reviews of videotapes, researchers revealed they felt connected to residents and believed their own self-transcendence and well-being were enhanced. A similar phenomenon has been reported by others (Kolanowski & Buettner, 2008; Rasin & Kautz, 2007). Data provided researchers with evidence to answer “Yes” to both research questions: “Will persons with late-stage AD show evidence of self-transcendence during the CBI?” and “Will persons with late-stage AD show evidence of well-being during the CBI?”
The small number of participants may have been a limitation in this study. Lack of knowledge about participants’ previous preferences for artistic activities was unknown. Reed’s theory includes contextual factors that mediate or moderate relationships, but contextual factors only were available to researchers during the CBI. Lack of this information could be viewed as a limitation. Consequently, the rectangular box that displayed contextual factors in Figure 1 was omitted in Figure 2. Additional information about contextual factors can be obtained from family members in future studies. In addition, even though all participants were in the advanced stage of AD, some were more verbal than others, which may also have been a limitation.
Nursing Practice Implications
Staff, although invited to join sessions, did not “have time” to participate. Yet, staff reported that monoprints, ribbon gems, and self-image portraits displayed in residents’ rooms gave them new topics to discuss with residents. As suggested previously (Kolanowski & Buettner, 2008), staff’s increased knowledge of residents may enhance well-being for residents and staff. Staff responses also supported the need for inservice staff workshops to increase staff involvement in care (Murrant, Rykov, Amonite, & Loynd, 2000). Because activity therapies typically are provided in long-term care (Kolanowski & Buettner), the CBI can be integrated into existing approaches and staff participation encouraged.
Family members should be encouraged to make their visits brief because 20 minutes into the CBI sessions, residents’ concentration lagged. Similar findings have been reported in previous studies (Chen & Walsh, 2009; Kolanowski & Buettner, 2008). It may be possible that residents only “allow” others into their “cocoons” for short periods of time. Visitors may be able to implement CBI activities if they know how to do so and have appropriate supplies. Such activities would provide positive memories and structure and promote well-being.
If all CBI activities are offered, the self-portrait activity should be conducted first. In this project, researchers planned a progression from the easiest to more complex activities; however, residents had no memory of previous sessions. If the self-image portrait is constructed first, an INT might gain new information that would promote reminiscence and more individualized care (Basting, 2003; Kolanowski & Buettner, 2008; Rasin & Kauntz, 2007).
While not planned, touch was used by the INT and residents and appeared to promote self-transcendence and well-being. Planned touch as suggested by Sansone and Schmitt (2000) and Doherty and colleagues (2006) should be further evaluated. Wood and colleagues (2005) reported that inanimate touch (holding instruments) promoted well-being. The papers, paints, and crayons used during the CBI by people with AD may have promoted reminiscence of positive childhood activities and should be further evaluated.
The small number of participants has been acknowledged as a possible study limitation. However, after repeated reviews of videotapes, researchers agreed that saturation occurred and concluded that transferability of findings is possible. CBI implementation with larger numbers of subjects would be feasible if family, staff, or volunteers could learn to implement the CBI. To promote this possibility, researchers made CBI training tapes and workbooks that are available from this article’s first author.
Transformational nursing leadership is crucial if nursing is to capitalize on new strategies to promote holistic care (Algase, 2008; Valentine-Maher, 2008). The theory of self-transcendence can help nurses identify additional nursing approaches to promote well-being in people with late-stage AD. Nurses who are committed to promoting well-being in people with late-stage AD may consider offering staff/family/volunteer joint workshops to teach CBI activities. Nurses who are committed to implementing creative arts to improve care need administrative and financial endorsement (Sadler & Ridenour, 2009; personal communication, K. Sparger, November 30, 2009; Sonke, Rollins, Brandman, & Graham-Pole, 2009). Nurses may need to lead the way if further implementation of creative approaches to promote well-being in people with late-stage AD is to occur.
Partial funding was received for this research from Barry University College of Health Sciences, Division of Nursing “Arts in Healthcare Education Fund” and the “Society for the Arts in Healthcare.” The authors thank Dr. Pamela Reed for her consultation in figure preparation and manuscript review. We express special appreciation to the Miami Jewish Hospital and Home for the Aged (MJHHA) and the persons with Alzheimer disease and their guardians who participated with the researchers at MJHHA.
About the Authors
Sandra M. Walsh, PhD RN FAAN, is a professor at Barry University College of Health Sciences, Division of Nursing in Miami Shores, FL. Address correspondence to her at firstname.lastname@example.org.
Ann R. Lamet, PhD ARNP, is an assistant professor at Barry University College of Health Sciences, Division of Nursing, in Miami Shores, FL.
Carolyn L. Lindgren, PhD RN, is a research specialist at Doctors Hospital and South Miami Hospital, Baptist Health of South Florida in Miami, FL.
Pam Rillstone, PhD ARNP BC CT, is an associate professor at Jacksonville University School of Nursing in Jacksonville, FL.
Daniel J. Little, PhD ARNP, is a clinical assistant professor of nursing at Florida International University College of Nursing and Health Science in Miami Shores, FL.
Christine M. Steffey, MSN ARNP BC CT, is an assistant professor at Barry University College of Health Sciences, Division of Nursing, in Miami Shores, FL.
Sharon Y. Rafalko, MS RN, is an instructor at Barry University College of Health Sciences, Division of Nursing, in Miami Shores, FL.
Rosanne Sonshine, MSN RN, is a clinical and off-site BSN program coordinator at Barry University College of Health Sciences, Division of Nursing, in Miami Shores, FL.
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