Afeez Abiola Hazzan, PhD1,2,3, Janis Humphrey, MS, RN2, Laurie Kilgour-Walsh, BA4, Katherine L. Moros, BHSc(OT), OTReg.(Ont)2, Carmen Murray, MSc(OT), OTReg.(Ont)2, Shannon Stanners, MCISc, SLP2, Maureen Montemuro, MHSc, RN5, Aidan Giangregorio1, Alexandra Papaioannou, MD1,2,3
1Geriatric Education and Research in Aging Sciences (GERAS) Centre, St Peter’s Hospital, Hamilton, ON; Department of Medicine, McMaster University, Hamilton, ON;
2Hamilton Health Sciences-St Peter’s Hospital, Hamilton, ON;
3Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON;
4Art Gallery of Hamilton, Hamilton, ON;
5School of Nursing, McMaster University, Hamilton, ON, CanadaDOI: http://dx.doi.org/10.5770/cgj.19.220
ABSTRACT
Background
Engaging with art can be valuable for persons living with dementia. ‘Artful Moments’ was a collaborative project undertaken by the Art Gallery of Hamilton and the Behavioural Health Program at Hamilton Health Sciences that sought to develop and implement a program of arts-based activities for persons in the middle-to-late stages of dementia who exhibit behavioural symptoms and for their accompanying care partners.
Methods
This pilot study employed a qualitative descriptive design. Eight participants were observed during multiple art sessions to evaluate their level of engagement in the program. Care partners also completed a questionnaire describing their experience. Qualitative content analysis was used to identify themes.
Results
For program participants, factors that promoted continued interest and engagement in art included: care partner involvement, group activities, opportunities to share opinions, validation of their personhood, and increased engagement over time. Care partners observed improvements in participants’ creativity, communication, relationship forming, and task accomplishment, and some reported reduced stress.
Conclusions
‘Artful Moments’ promoted engagement and expression in persons in the middle-to-late stages of dementia, as well as having benefits for their care partners. Limitations of the study included a small convenience sample drawn from one hospital setting.
Key words: art, dementia, caregiving, long-term care, burden
There has been a shift towards new roles for art galleries as places for learning and such settings are seeking ways to reach out to more diverse audiences, including persons living with dementia. Researchers believe that, as a brain is being progressively affected by dementia, an individual can still experience the drive to be creative.(1) In addition, studies have shown that engaging in creative activities can provide therapeutic benefits by relieving stress, improving creativity, and increasing resilience, suggesting a link between social and creative activities and the preservation of cognitive functions.(2) Creative activities, such as art appreciation and art making, are not only therapeutic to the person engaging in them, they are also social activities that strengthen social ties among participants.(2,3)
Art gallery-based program for persons with dementia have been described in the literature more recently and, among other benefits, have reported on enhanced social engagement. One of the earliest took place at New York’s Museum of Modern Art where persons with mild dementia living in the community attended a 90-minute tour once per month accompanied by their family members.(4)
At the National Art Gallery of Australia, eight persons with moderate-to-severe dementia attended an art gallery program weekly for six weeks to discuss artwork with gallery educators. They were highly engaged in the moment and showed more positive affect than usual, but effects were not long lasting.(5) A study of six persons with mild-to-moderate dementia, who participated in viewing of paintings followed by art making at London’s Dulwich Picture Gallery in the United Kingdom (UK), revealed increased attention and engagement along with improved episodic memory and verbal fluency.(6) Thirteen persons with mild-to-moderate dementia and their carers participated in eight two-hour weekly sessions at two distinct art galleries in the UK. The program was found to be socially engaging, and stimulated attention and concentration.(7)
The Behavioural Health Program (BHP) is an inpatient program, serving patients in the middle-to-late stages of dementia who require assessment and treatment of behavioural issues. In 2009, a new building was designed specifically for this population at the St. Peter’s Hospital site of Hamilton Health Sciences in Hamilton, Ontario. To enhance the quality of life for these patients, a donor purchased pieces of art from the Art Rental and Sales program at the Art Gallery of Hamilton (AGH) for display on the unit. To select these artworks, BHP staff, art gallery staff, and the patients on the program worked collaboratively. Over a series of visits, artworks were brought to the hospital and shown to the patients. Through facilitated discussion, patients then selected the artworks for purchase and the relationship between the AGH and the BHP evolved into the “Artful Moments” pilot program. The ‘Artful Moments’ pilot program, which was inspired by the Museum of Modern Art (MoMA) in New York City’s ‘Meet Me at MoMA’ program, differs from the ‘Meet Me at MoMA’ program in that it focused on persons in the middle-to-late stages of dementia who exhibit challenging behaviours; included both art making and art appreciation; and occurred in both the art gallery and hospital setting.
In this paper, we report the qualitative findings from the ‘Artful Moments’ pilot program that were based on observations of eight persons with dementia from the BHP, and written comments from their respective care partners. The research questions were as follows:
Does an arts-based program (art appreciation and art making) facilitate positive engagement in the moment for persons in the middle-to-late stages of dementia?
What is the impact of the ‘Artful Moments’ intervention on care partners (unpaid family members and paid staff) who participated in the program?
Ethics approval for the study was obtained from the Hamilton Integrated Research Ethics Board) (REB#:13-105). All participants, through their Substitute Decision Makers, understood that they could withdraw at any time. A consent form accompanied a letter of information and both were approved by the Research Ethics Board. Each patient’s Substitute Decision Maker (SDM) signed the consent form and was given a copy after the study was explained and any questions answered.
A qualitative descriptive design incorporated both observation of persons with dementia and questionnaires administered to care partners as sources of data.(8,9) The study population consisted of older adults in the middle-to-late stages of dementia who were in-patients on the BHP at St. Peter’s Hospital. The 63-bed BHP is designed for the assessment and treatment of behavioural and psychological symptoms of dementia in older adults.
Participant recruitment was facilitated by advertising flyers that were posted on the program’s two units. There were eight participants in total over the course of the 27 sessions. No more than six participants and their care partners could be accommodated in the ‘Artful Moments’ pilot program classes at any one time, so patients whose families expressed interest on their behalf were enrolled until capacity was met. Others who had expressed interest were added to a waiting list, and when a participant was discharged to long-term care and a space became free, a patient from the waiting list was able to join.
To prepare for the intervention, the team of artist-instructors from the AGH attended a half-day session and a full-day workshop facilitated by clinical staff. The half-day session focused on understanding dementia, including the importance of enhancing the remaining abilities of persons with dementia. The workshop was an established evidence-based curriculum known as Gentle Persuasive Approaches (GPA) in Dementia Care.(10) GPA is offered across Canada to staff who work with persons with dementia in long-term, complex, and acute care. It is designed to prepare staff to deliver person-centered care to persons exhibiting challenging behaviours. In turn, the AGH staff provided five two-hour sessions to the BHP staff that introduced them to art appreciation and art-making strategies in several media, along with training in facilitating discussions about art.
‘Artful Moments’ used a combination of art appreciation and hands-on art-making activities to facilitate positive engagement in older adults with dementia. The arts-based activities provided opportunities for sharing among program participants, care partners, and staff from both St. Peter’s and the AGH. ‘Artful Moments’ provided meaningful, individualized, and engaging activities that encouraged participants to be creative, to express themselves, and to try something new. The focus was on enhancing the person’s strengths and abilities rather than overemphasizing the deficits associated with the condition.
Twenty-seven sessions were held between August 2013 and June 2014. About one visit per month occurred at the AGH to view art in the exhibition spaces (art appreciation) and to do specially designed hands-on art activities (art making). The other visits took place on the BHP where the artist-instructors from the AGH came to facilitate art appreciation and art making. Approximately one hour was spent on art appreciation and one hour on art making during each session, with each activity complementing the other. This maximized engagement in both activities. For example, after visiting the Tanenbaum African Collection and discussing the role of masks in West African society (art appreciation), the art-making session focused on making masks. Table 1 shows the schedule of sessions and the topics covered by the gallery educators and artists.
TABLE 1. Topics for the art appreciation and art making sessions
The engagement of persons with dementia was measured by direct observation using the “Affect and Engagement Rating Scale” (Modified Philadelphia Affect Rating Scale). This scale was recommended to the BHP team by the team from the ‘Meet Me at MoMA’ program.(4) It measures interest, pleasure, sadness, anxiety, and anger through observations of certain behaviours displayed by the program participants (such as “looking at the art under discussion” to demonstrate interest) while they are taking part in the art appreciation and art making.(11) It also includes space for comments and for noting observations.
During each hour-long art appreciation session and each hour-long art-making session, four program participants were selected through a random draw. The engagement of these four randomly selected program participants was observed systematically by trained staff observers using the structured scale. Three of the four were observed on a rotating basis by one observer using a “standard observation” schedule which involved observing each of those program participants over two 10-minute periods during the hour. That is, participant A was observed for 10 minutes, followed by B and C for 10 minutes each, and then back to participant A. Observations were recorded every two minutes during the 10-minute period using the structured scale. The fourth selected program participant was observed for the full hour (“full observation”) by the second observer. In addition to noting the presence or absence of behaviours on the scale, observers wrote detailed comments and observations that contributed to the qualitative data for this study. A speech-language pathologist, two occupational therapists, and one clinical nurse specialist comprised the pool of trained observers. If not selected as observers for a particular session, they were on hand to provide education and intervention to families when a participant had difficulty with the art-making component, for example, initiating the activity. Sometimes they coached the AGH team and provided tips such as the importance of giving positive feedback, the use of the hand-over-hand technique, and other key communication strategies.
Engagement of the participants was also measured indirectly from the perspective of the care partners (both family and staff) who completed a questionnaire at the end of each session. This questionnaire was adapted from the survey developed for the ‘Meet Me at MoMA’ program and offered care partners the opportunity to rate the experience and add written comments about the session.
Qualitative content analysis has been defined as a dynamic form of analysis of verbal data that is oriented toward summarizing the informational contents of the data.(8,9) It provides a deep knowledge and understanding of the phenomenon under study.(12,13)
All observers’ notes from the “Affect and Engagement Rating Scale” and care partner responses from the questionnaire they completed at the end of each session were read repeatedly to achieve immersion and gain a full understanding of the entire data obtained from the sessions. Perusal of the data was guided by the objectives of the study. Once a full understanding of the data was achieved, important words from the data that appeared to capture key thoughts or concepts were highlighted. The initial analysis commenced as the first author noted his thoughts and impressions about the data obtained. During this process, codes that represented groups of key thoughts were derived directly from the text data. Once the initial coding scheme was finalized, the codes were sorted based on how closely related they were to one another. Finally, the emergent categories from the data were grouped into meaningful clusters that represented the major findings (or themes) from the study.(14,15)
Several strategies were used to ensure rigour. These included an audit trail of all decisions related to participant enrolment, data collection, analysis, and writing. All investigators reviewed data transcripts and provided feedback on the coding and major themes. Finally, the entire research team provided feedback on the analysis and study findings.
Table 2 presents the demographic profile of the eight program participants who were involved in the study. They were older males with severe cognitive impairment(16) who were dependent for their activities of daily living. The frequency of their usual behaviours is detailed in Table 2, along with additional demographic data including type of dementia, educational level, and previous interest in art. One participant attended all 27 sessions that were offered, and the other seven attended 26, 25, 11, 11, 10, 9, and 5 sessions, respectively (see Table 3).
TABLE 2. Demographic characteristics of program participants
TABLE 3. Attendance and length of observations of the eight program participants
Three participants could not regularly be accompanied by a family member, so a care provider from the BHP (usually a nurse, therapeutic recreationist or therapy assistant) partnered with the participant. A total of 471 10-minute observations took place over the 27 sessions for an average of 590 minutes per participant (range 110–1160 minutes). Care partners returned 127 questionnaires with comments. Only six questionnaires were not returned. Respondents were spouses (88 questionnaires completed), formal care providers (28 questionnaires completed), and other family members (11 questionnaires completed).
Results of the analysis of program participant themes are presented in Table 4. Care partners’ availability and involvement at the sessions meant that they helped program participants engage in the art appreciation and art-making activities. Care partners were observed using strategies such as coaching, demonstrating, modelling, and offering encouragement to help engage their partners. Being part of a group activity with other participants seemed to contribute to engagement as program participants watched others doing art activities. Program participants not only demonstrated their strengths, but were encouraged to express themselves both verbally and creatively, and they appeared to take opportunities to share their thoughts and opinions with their care partners, staff, and other participants in the program. Analysis of the data indicated that there may have been a validation of personhood as program participants seemed to enjoy the appreciation they were receiving for their efforts and responded positively to other participants, care partners, or staff admiring their art. Finally, program participants seemed to become more engaged over time.
TABLE 4. Program participant themes
Table 5 presents results of the analysis of care partners’ questionnaires. Care partners enjoyed seeing the creative side of the person with dementia. They reported that the program enhanced communication with the person, and viewed the ‘Artful Moments’ experience as an opportunity for building meaningful relationships with other program participants including other care partners.
Care partners reported that the program helped them to focus on accomplishing a task with the person with dementia. Some reported experiencing reduced stress as a result of their participation in ‘Artful Moments’. One care partner wrote that she was able to better help her husband eat after learning how to help him with painting; another spouse commented that she learned strategies that improved her ability to interact with her husband.
This paper presents results from the ‘Artful Moments’ pilot study, an innovative collaboration between St. Peter’s Hospital and the AGH in Hamilton, Ontario. ‘Artful Moments’ was developed for persons in the middle-to-late stages of dementia who exhibit behavioural symptoms, and for their care partners. The program used a combination of art appreciation and art making, two activities that are designed to complement each other, to facilitate engagement “in the moment” for persons with dementia.
Like the ‘Meet Me at MoMA’ program at the Museum of Modern Art (MoMA) in New York City and other similar programs using art as an intervention for persons with dementia, ‘Artful Moments’ has shown that arts-based programming can be an effective way to engage people with dementia.(4,6,7) The pilot study findings suggest that care partner availability and involvement in art, as well as involvement in group activities with other participants, may promote positive engagement for persons with dementia. Consistent with previous findings, participants seemed reassured by the presence of their care partners at the art sessions, thereby showing willingness to participate in activities.(2)
The goals of program such as ‘Artful Moments’ are to encourage individual expression and to strengthen social connections.(2) Studies have shown that persons with dementia often feel silent and express that their voice is ignored.(17) In this study, program participants were able to share their opinions and make their voices heard. They also seemed motivated by other engaged participants who were involved in art activities.
‘Artful Moments’ opened up new possibilities for care partners by making it possible to see the creative side of the person with dementia. The program enhanced communications and made it easier to engage meaningfully with other program participants including other care partners. By working together to participate in arts, persons with dementia and their care partners were able to spend time together to engage in activities that promote mutual enjoyment. This had the effect of helping to strengthen the relationships between participants and care partners, especially family care partners.
Care partners’ reports of feeling less stressed is another positive outcome of the ‘Artful Moments’ intervention. This may suggest a possible role for art appreciation and art making in reducing caregiver burden, which has been defined as the extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.(18)
There were a few limitations of the study. Observer-effect can be an issue with using observational methods. This was minimized by observers positioning themselves unobtrusively and, since participants with dementia did not understand the nature of the study (their SDMs had provided consent), it is unlikely they changed their behaviour in the presence of observers. In addition, the convenience sample of participants was recruited from only one setting, and findings may not be consistent with other settings. Only eight persons with dementia and their care partners participated in this pilot study. Finally, all the participants were male and results could vary with female participants.
Despite these limitations, however, the current study contributes to the growing evidence of the value of arts in dementia care. The program provided meaningful, individualized, and engaging activities that encouraged participants to be creative and to express themselves, and demonstrated the unique collaboration between a health-care team, and art gallery educators and artists. Further research into the effectiveness of the educational interventions for the clinical and art gallery staff offered at the beginning of the project is warranted.
‘Artful Moments’ used a combination of art appreciation and hands-on art-making activities to facilitate positive engagement in older adults in the middle-to-late stages of dementia. The program offered activities and a structure that promoted the positive aspects of caregiving, provided a person-centered approach, and created activities that care partners could share with persons with dementia. Participating in art activities seemed to help care partners shift their focus away from the negative to the more positive aspects of caregiving, such as the satisfaction in seeing the person with dementia find renewed interest and joy in an activity.
Future studies should focus on determining the essential elements of this arts-based program, as it is currently unclear what actually contributes to the outcomes observed in this and other studies. Whether the location (art gallery versus hospital) made a difference is not well understood. As well, additional studies focusing on family care partners could help shed further light on the impact of art interventions on reducing stress or caregiver burden.
The ‘Artful Moments’ program was supported by funding from the Ontario Arts Council and the Hamilton Health Sciences Foundation. The Hamilton Health Sciences Foundation also supported the postdoctoral award. We thank the team of artists and educators at the AGH, as well as the staff on the BHP at Hamilton Health Sciences, who participated. We also thank Jennifer Kodis, Director of Seniors, Emergency, and Community Medicine, Hamilton Health Sciences for her support. Finally, special thanks to Esther Coker, Clinical Nurse Specialist, St. Peter’s Hospital, for her help in preparing this manuscript.
The authors declare that no conflicts of interest exist.
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Canadian Geriatrics Journal, Vol. 19, No. 2, June 2016