Abstract
A Visual Arts Education (VAE) program was tested among 26 pairs of persons with dementia and their caregivers. Pairs were randomized to VAE or control groups, and each group met once per week for 2 months (8 weeks) to participate in activities with a trained arts instructor. Groups were assessed at baseline, 2 months, and 6 months. The VAE group received instruction and produced a different type of artistic work each week. The pedagogical strategy was designed so that each activity was increasingly novel, challenging, and complex. The control group viewed slide shows, participated in discussions about art, and made paintings. At the 6-month follow-up, significant improvements in caregiver burden and self-esteem for the persons with dementia were found in the VAE group. The VAE pedagogical approach shows the potential for effectiveness for improving quality of life for persons with dementia and their caregivers.
Keywords: Dementia, Caregiving, Visual Arts Education, Pedagogy, Randomized Controlled Trial
Introduction
In the absence of a known cure for Alzheimer’s disease and related dementias (ADRD), identifying ways to improve quality of life for both individuals and caregivers who cope with these diseases is a primary research focus and concern. Non-pharmacological approaches to improve quality of life for persons with ADRD have the advantage of few to no side-effects, can reduce negative emotional and behavioral symptoms, provide tools to improve cognition, complement and sometimes exceed the effects of pharmacotherapy, and even delay institutionalization (Herholz, Herholz, & Herholz, 2013; Olazarán et al., 2010). Improving quality of life for caregivers is also a major concern. Caring for persons with ADRD is associated with well-documented increases in burden, distress, and decline in mental health and well-being (Sörensen, Duberstein, Gill, & Pinquart, 2006). Interventions for caregivers, including case management, education to decrease depression, psychotherapy and the use of computer networking have met with limited success (Peacock & Forbes, 2003).
One of the avenues recently investigated for improving quality of life for older adults as well as persons with ADRD is to encourage their participation in creative arts activities. A recent review of participatory art programs for older cognitively normal adults suggests overwhelmingly positive cognitive, affective, and quality-of-life outcomes for various participatory art forms including dance, expressive writing, music (singing and instrumental), theatre arts, and visual arts (Noice, Noice, & Kramer, 2014). In addition, a review of participatory programs in visual arts for persons with dementia and their caregivers suggests quality of life benefits (mostly psychological) for both (Salisbury, Algar, & Windle, 2011). However while these indications are promising, more rigorous research involving randomized controlled trials is needed (Noice et al., 2014; Salisbury et al., 2011).
In the current study, we report on a novel and innovative approach that administers visual arts activities to persons with ADRD and their caregivers. This approach, developed from the field of Visual Arts Education (VAE), involved a series of seven different high quality mentally stimulating and enriching hands-on visual arts activities and a pedagogical strategy for administering these activities to potentially improve quality of life. VAE activities, when applied in an enriching learning format, are known to stimulate and integrate multiple domains of learning that include cognitive, affective, physical (sensorimotor skills), personal, interpersonal and social domains (Eisner, 1958, 2002; Jensen, 2012; Richards, 2003; Steiner, 2001). In addition to stimulation and engagement with a wide scope of domains, certain types of cognitive processes are enhanced and stimulated while creating works of art: attention, focus and concentration, divergent thinking, visual-spatial awareness, image formation, memory, imagination, inspiration and intuition (Arnheim, 1969; Eisner, 2002; Gardner, 1999; Richards, 2003; Steiner, 2001). Accessing and building upon these different cognitive skills, multiple domains and processes may lead to improved cognition or enhance quality of life. Caregiver quality of life may also benefit by the stimulation and interaction involved in creating works of art.
To facilitate and enhance learning in the visual arts, a pedagogical strategy for administering VAE activities was developed (Tietyen, 2012; Tietyen & Richards, 2017). This pedagogical strategy incorporated components of novelty and incremental challenge into each visual art activity. Extensive research on animals indicates that key components of enriched environments are novelty and complexity that may stimulate cognitive processes involved in learning and memory (Nithianantharajah & Hannan, 2009). Accumulating evidence also suggests cognitive health benefits for older adults and persons with ADRD who engage in multimodal, mentally challenging leisure activities that incorporate novelty as components of learning (Fissler, Küster, Schlee, & Kolassa, 2013; Fritsch, Smyth, Debanne, Petot, & Friedland, 2005; Verghese et al., 2003; Wang et al., 2013). By gradually increasing the novelty, challenge, and complexity of each VAE activity, the aim was to create conditions where participants were fully engaged in the experiences of learning and could meet each challenge more easily and with greater likelihood of success (Tietyen, 2012, Tietyen & Richards, 2017).
Our VAE pedagogical approach was previously field-tested using a small convenience sample that yielded promising results (Tietyen, 2012). The results indicated that more quality of life domains than have been previously reported, including cognitive, affective, and physical, were improved. In the current study, we built upon our earlier research and included caregivers to assess effects on their wellbeing. We randomized participant pairs (persons with ADRD and accompanying caregivers) to VAE or control activities. We hypothesized that participants with ADRD randomized to the VAE activities would improve on measures of self-esteem, quality of life and activities of daily living (ADL), and that caregivers would improve on measures of self-esteem, quality of life and caregiver burden.
Methods
Design and Sample
Participant pairs were randomly assigned to either the VAE program or the control group. Both the experimental (VAE) and the control groups participated in visual arts activities, including hands-on activities, and therefore the differences in the groups could not be easily discerned by participants. Although participants could not be blinded to their group activities, only the researchers knew whether the assignment was experimental or control. The participant pairs (persons with ADRD plus their caregivers) were recruited from the Alzheimer’s Disease Center and the Kentucky Neuroscience Institute at the University of Kentucky, and the general public. Inclusion criteria for persons with dementia were men and women of any age, race or ethnic group, a diagnosis of mild to moderate ADRD, and Mini Mental State Examination (MMSE) scores ranging from 12–26. The person with dementia was required to live in the community and to have intact vision and hearing. The exclusion criterion was any severe psychiatric comorbidity that might limit participation in the visual art activities. The inclusion criteria for caregivers were that they must be a caregiver for the participants with ADRD, have 10 or more hours of contact per week, and must accompany the individual with ADRD to the study activities as well as assist them in arts tasks when necessary. Informed consent was obtained for all participants, and study procedures were approved by the Institutional Review Board at the University of Kentucky.
Two sessions of two months (eight weeks) were conducted in Spring and Fall 2016. A total of 35 pairs were randomized to the VAE activities, and 26 pairs completed the study. For the Spring session, 27 pairs were randomized, and 7 pairs dropped out; 4 pairs dropped out before the study began due to medical or transportation issues, and 3 pairs dropped out during the study because the persons with ADRD did not want to continue. For the Fall session, 8 pairs were randomized, and 2 pairs dropped out; 1 pair dropped out before the study began due to transportation issues and the remaining pair dropped out because the person with ADRD did not want to continue. In addition, one caregiver accompanied two persons with ADRD, thus the number of study participants (persons with ADRD plus caregivers) was 53. Overall, 14 pairs of participants completed the two months of experimental activities, and 12 pairs completed the control activities.
Procedures
The activities for both the experimental (VAE) and control groups took place at the School of Art and Visual Studies at the University of Kentucky. The VAE activities were administered to the experimental group in sessions of approximately 1.5 hours. These VAE activities were instruction in hat decoration, collage, embossing, painting, ceramics (part 1), ceramics (part 2), photography, and printmaking. The VAE group participants created an art product each week following the instruction. The control group also participated in 1.5 hour sessions each week for eight weeks, where they viewed a slideshow and discussed a theme relating to still-life, landscape, or abstraction, and then created a painting based on the theme at the end of the session. Two art education instructors (ACT and AGR) delivered the activities and alternated with the experimental and control groups each week to minimize possible instructor biases.
Outcome measures
Outcome data were collected at baseline, immediately after the two months of activities, and at the six-month follow-up. The primary outcomes for the trial were self-reported self-esteem and quality of life for participants with dementia. Secondary trial outcomes included ADL in participants with dementia (as reported by their caregivers) as well as caregivers own self-reported self-esteem, quality of life and burden.
Outcome Measures for Persons with ADRD
Self-esteem was measured by self-report with the Rosenberg Self-Esteem scale (ROS) (Rosenberg, 1986). This 10-item scale measures both positive and negative feelings with a 4-point Likert scale (strongly agree to strongly disagree). Range of total scores is 0–30, with higher scores indicating better self-esteem. Quality of life (QOL) was measured by self-report with the QOL-AD test instrument (Logsdon, Gibbons, McCurry, & Teri, 2002). The QOL-AD was designed for persons with ADRD as well as caregivers and measures 13 constructs: physical health, energy, mood, living situation, memory, family, marriage, friends, self as a whole, ability to do chores, ability to do things for fun, money, and life as a whole. Points are assigned as poor=1, fair=2, good=3, excellent=4. Total scores range from 13 to 52, with higher scores indicating better QOL. ADL (as reported by caregivers) were measured by the Functional Assessment Questionnaire (FAQ) (Pfeffer, Kurosaki, Harrah, Chance, & Filos, 1982). The FAQ is a 10-item caregiver-completed questionnaire that reports on the functional ability of the person with dementia. Activities are rated as dependent=3, requires assistance=2, has difficulty but does by self=1, normal=0, or NA =0. Total score range is 0–30, with lower scores indicating less dependency or greater functional independence.
Outcome Measures for Caregivers
The outcome measures for the caregiver were self-reported self-esteem, QOL, and caregiver burden. Self-esteem and QOL were measured with the same instruments as above, and caregiver burden was assessed with the 22-item Zarit Burden Interview (ZARIT) (Zarit, Reever, & Bach-Peterson, 1980). ZARIT items are scored with a 5-point Likert scale (never to nearly always), and the total score range is 0–88, with lower scores indicating less burden.
Statistical Methods
For each endpoint and participant type (participants with dementia and caregivers) the mean baseline scores were compared between control and experimental groups using two sample t-statistics.
Post-intervention responses for persons with ADRD and caregivers were analyzed using a linear mixed model (LMM) for a repeated measures design with fixed effects group (control versus experimental), time (2 and 6 months post-baseline), and the interaction between group and time. Random effects consisted of within and between subject variability. The mean response for subjects at each time point was adjusted for the corresponding baseline score on that instrument. Since some of the repeated measures were missing for participants, the analysis is valid under the assumption of missing at random, implying the LMM compares the least squares means (mean response adjusted for baseline and accounting for the missing observations). Sensitivity analyses were conducted to assess the effect of including the MMSE score in the models. Tests for significance were computed for the main effects of group and time and the interaction between group and time, with statistical significance set at P < 0.05.
Only the data from 26 pairs of participants who completed the study were included in the analyses. We did not perform an intention-to-treat analysis because we did not have outcome data on the participants who dropped out. Further, 5/9 pairs that dropped out left prior to the start of the study and received no intervention.
As an exploratory analysis, the 2-month and 6-month changes from baseline in the scores on an instrument for participants with dementia was correlated with the changes in the same or similar instrument for the caregiver by using Pearson’s linear correlation coefficient. All statistical analyses were completed in SAS 9.4®.
Results
Persons with ADRD and caregiver demographics are listed in Table 1; the groups were balanced on age, sex, and MMSE. Most caregivers were female (80.7%), while the persons with ADRD were almost evenly split on sex. The mean response for each instrument by group and time point is listed in Table 2 for persons with ADRD and in Table 3 for caregivers. Note that in all cases a comparison of the mean baseline scores (month 0) on each instrument was not statistically significant when control was compared to experimental (P > 0.05 in each case). However, since in many cases the group mean baseline scores were not equal, mean responses at follow-up months 2 and 6 were adjusted for baseline. In addition, responses from 3 of the 27 persons with ADRD, and 4 of the 26 caregivers, were missing at the 6-month follow-up, representing 11.1% (15.4% for caregivers) of the observations at that time point.
Table 1:
Participant | Variable | Control | Experimental* | P value |
---|---|---|---|---|
Persons with ADRD | N | 12 | 15 | - |
Age | 74.0 ± 8.9 | 74.8 ± 12.6 | 0.86 | |
MMSE | 21.4 ± 5.0 | 22.1 ± 4.9 | 0.71 | |
Sex (F:M) | 6:6 | 7:8 | 0.86 | |
Caregivers | N | 12 | 14 | - |
Age | 64.6 ± 14.8 | 61.9 ± 15.6 | 0.65 | |
Sex (F:M) | 9:3 | 12:2 | 0.49 |
One caregiver attended with two persons with ADRD
Table 2:
Group | Month | N | Instrument* | ||
---|---|---|---|---|---|
ROS | QOL | FAQ | |||
Control | 0 | 12 | 20.5 ± 6.6 | 37.5 ± 7.6 | 15.9 ± 8.6 |
Control | 2 | 12 | 22.2 ± 4.7 | 37.8 ± 8.1 | 18.6 ± 7.5 |
Control | 6 | 11 | 18.7 ± 7.0 | 36.5 ± 6.6 | 19.3 ± 9.8 |
Experimental | 0 | 15 | 21.3 ± 4.3 | 39.1± 6.6 | 16.7 ± 9.7 |
Experimental | 2 | 15 | 23.3 ± 3.1 | 40.7 ± 6.2 | 18.3 ± 9.7 |
Experimental | 6 | 13 | 23.5 ± 3.7 | 40.5 ± 7.6 | 14.0 ± 9.7 |
ROS = Rosenberg Self-Esteem scale, QOL = Quality of Life-AD, FAQ = Functional Assessment Questionnaire
Table 3:
Group | Month | N | Instrument* | ||
---|---|---|---|---|---|
ROS | QOL | ZARIT | |||
Control | 0 | 12 | 23.1 ± 4.7 | 42.9 ± 4.8 | 34.0 ± 13.8 |
Control | 2 | 12 | 24.3 ± 3.9 | 43.7 ± 5.7 | 36.9 ± 11.2 |
Control | 6 | 11 | 24.1 ± 5.2 | 42.3 ± 5.4 | 36.5 ± 11.3 |
Experimental | 0 | 14 | 22.9 ± 5.3 | 42.4 ± 6.3 | 29.4 ± 12.5 |
Experimental | 2 | 14 | 23.4 ± 4.7 | 41.9 ± 6.8 | 26.7 ± 9.7 |
Experimental | 6 | 11 | 23.9 ± 4.4 | 38.8 ± 7.7 | 26.7 ± 9.7 |
ROS = Rosenberg Self-Esteem scale, QOL = Quality of Life-AD, ZARIT = Zarit Burden Interview
The LMM analysis adjusted responses for baseline and the missing observations; the adjusted means are plotted in Figure 1. The LMM analysis also showed that the group by time interaction was not statistically significant for any of the instruments for either persons with ADRD or caregivers (P > 0.05 in all cases). The main effect of group was statistically significant for two of the instruments, such that the participants who received the experimental intervention had better outcomes: ROS for the persons with ADRD (P = 0.038) and ZARIT for the caregivers (P = 0.01). Inclusion of MMSE in the models did not alter the results and conclusions.
There were no significant correlations between changes from baseline to follow-up on the scores on a given instrument for persons with ADRD and changes in the corresponding instrument for caregivers, except for the 6-month change in functional status (FAQ) for persons with ADRD and the 6-month change in burden for caregivers (ZARIT) with correlation r=0.48 (P = 0.03), such that higher dependence on the FAQ was associated with higher burden on the ZARIT.
Discussion
In this randomized controlled single-blind trial, we evaluated changes in self-esteem, QOL, and ADL, and caregiver burden due to VAE. The 6-month experimental group’s post-test results showed VAE significantly improved self-esteem for the persons with ADRD and reduced caregiver burden. Marginally significant improvements were also indicated in QOL and ADL of the persons with ADRD. These results suggest that the VAE pedagogical approach was effective and had a carry-over effect for these benefits that extended past the duration of the activities.
These results suggest that the experimental group was challenged to a much greater extent in their art production. The VAE activities were designed to stimulate more in-depth problem-solving, provide more visual arts concepts exposures, incorporate added skills and processes with increasingly complex learning experiences. While participants from both the VAE and control groups expressed that they enjoyed the activities and that they were meaningful to them, the control group used only one type of art medium (paint) throughout two months. Therefore, the observed outcomes are likely due to the added complexities of the VAE approach. This is best reflected in Eisner’s concept of art education:
“There is little that is more problematic that a white sheet of paper or a lump of clay. Out of these raw materials [the artist] must create an art form. He must struggle to learn how to feel towards his efforts as they develop, and how to use his intellect and understanding to change and improve his efforts so that the final problem will be successfully solved” [10].
In other words, the process of creating a work of art provides a continual problem to be solved and brings multiple cognitive, emotional, and physical elements to bear in the process.
The increased self-esteem for the persons with ADRD in the experimental group at six-months has several plausible explanations. Successfully meeting the different challenges posed by the VAE activities may have provided the persons with ADRD a greater sense of accomplishment and improved self-esteem. At the end of the two-month session, participants took their artworks home. It could be that seeing their artworks at home (and perhaps hearing others comments about them) additionally reinforced feelings of self-worth or competence, thus leading to improved self-esteem. However, an alternative explanation could be that some of the skills and abilities gained from the VAE activities provided a way to approach problems in everyday life, leading to greater self-efficacy and enhancing self-esteem. This may also explain the trend toward improved QOL and ADL in the VAE group, since greater self-esteem could mean a move towards more functional independence and better QOL in general. Some of the skills gained from the VAE activities might be improved focus and concentration, visual-spatial skills, planning and organization, or sensori-motor skills. These different effects are noted as significant benefits of education in visual arts (Eisner, 2002; Jensen, 2001; Steiner, 2001). Since these skills were not measured in the current study, they should be a focus of future studies.
It is also possible that persons with ADRD in the experimental group gained a sense of empowerment through their accomplishments in the visual arts study that extended into their daily lives. It has been suggested that the arts play a powerful role in increasing self-esteem for older adults by providing skills that can be developed and mastered (Gene D. Cohen, 2005; G. D. Cohen et al., 2006). Kohl and Oppenheim (Kohl & Oppenheim, 2012) suggest that creating works of art is empowering, whether or not one becomes an artist, because the arts develop, among other things, imaginative skills, understanding of planning and execution of a work, a spirit of independence and the deep satisfaction of being able to use your skills and mind to produce results you honor and are willing to share with others. Finally, participants may have continued to produce artworks on their own after the two month session was completed, leading to a greater sense of accomplishment and improved self-esteem.
Equally as striking in the results is the reduced burden for the caregivers in the experimental group. It could be that the caregivers had less to do in the experimental group (they did not participate in the discussion as in the control group), and so the activities were a relief or distraction from regular caregiving duties. However, this does not explain why reduced caregiver burden occurred at the six-month follow-up. The more likely explanation is that something changed in their interaction with the person with dementia after the study activities were completed. Perhaps the improved self-esteem of the persons with ADRD meant a more positive outlook in general, relieving stress or anxieties on the part of the caregiver. Alternatively, the caregiver may have recognized that the person with ADRD was more confident and capable of meeting challenges than they previously perceived. During the study, caregivers in the experimental group often expressed surprise, joy, and even tears over what was accomplished by the persons with ADRD. Since one of the components of caregiver burden is the degree of dependency and state of the disability that is perceived by the caregiver (Sörensen et al., 2006), it may be that an observed or perceived change in their abilities caused some relief in burden. Lastly, it may be that the caregiver and person with dementia continued to work together on art projects outside of the classes. In this case, a newfound way of interacting with an enjoyable activity may have contributed to decreased caregiver burden.
This study has some limitations. A larger sample size would provide more power for the analysis and might have clarified the non-significant findings. Although 35 pairs consented to this study, a total of nine pairs dropped out over 2 months. A future study might address the challenges faced by both persons with dementia and their caregivers to have a sustained commitment to the activities. For instance, Golden (Golden, Gammonley, Hanna Powell, & Wan, 2017) describes some of the practical challenges faced by caregivers to comply with arts interventions as overly busy lifestyle, heterogeneity of artistic interest among persons with dementia and their caregivers, and need for caregiver support groups to aid in recruitment. Other improvements to this study could be made by extending the follow-up time past 6 months to assess whether QOL improvements, which were marginally significant for the persons with ADRD, would become significant at a later date. It would also be helpful to add an additional questionnaire at the six-month follow-up to find out if visual arts activities were continued past the duration of the two-month sessions. The involvement of more members of the community, including persons with milder forms of cognitive impairment as well as persons who reside at assisted living facilities and nursing homes, could also be advantageous.
One of the participants with dementia in the study articulated, “I uncovered abilities I did not know I had. I will never make a living as an artist but I have an appreciation for those who do. “ This is not only a powerful statement, but it also demonstrates the level of understanding of visual arts concepts and thoughtfulness of the participants. To this end, a final take away from this study is that persons with ADRD may be more capable of learning, including complex learning, than is commonly perceived. This hypothesis has been expressed by a number of professionals in the field although it has not been tested with randomized controlled trials (Basting, 2016; Power, 2014; Zeisel, 2011). The educational approach used by this study was designed to emphasize the strengths and abilities that persons with ADRD retain and not to overtly focus on areas of deficit or targeting of symptoms. There were no persons with ADRD in this study who were incapable of doing the art tasks and almost all were eager to attempt the activities. Many surprised themselves at what they were able to achieve. This was confirmed by statements from caregivers: “After every class Mom always left feeling happy and surprised by what she was able to create” and “This class helped to bring out an element of creativity that has been missing for him for over a year.” These statements reflect the aims of this study, to provide enjoyable learning experiences in the visual arts that might stimulate those skills and processes that persons with ADRD retain, improving quality of life for both persons with ADRD and their caregivers.
Conclusion
In summary, the findings from this study show effectiveness of the VAE pedagogical approach for improving self-esteem for persons with ADRD and reducing burden for their caregivers. These effects occurred at the six-month follow-up suggesting a carry-over effect in these areas. While further research is necessary to determine the conditions under which VAE activities are most effective, these results support a VAE pedagogical approach to improving quality of life for both persons with ADRD and their caregivers.
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